One Year Post-HSCT Update

I cannot believe one whole year has passed since I underwent HSCT in Russia.  Still seems so crazy to think that I went to the other side of the world to undergo a medical procedure that I couldn’t get in my own country.  At times it seems like all this happened just yesterday, but then at other times it seems like it never happened at all.  But 11 May 2017 was my 1 year birthday, I did nothing to celebrate the occasion, was just another day for me, in fact I think I was at work.   I’m going to cover a lot of things in this blog post, so it’ll be a mess, but bear with me.

First off, lets look back at the past year.  What are my thoughts on recovery now that an entire year has passed by?  Well to be quite honest at the start of all this, I was curious myself on how I would feel about the whole recovery period once I got to this point.  I mean it’s hard to know what recovery will be like when you hear second-hand accounts on facebook groups, most people who are 1+ years out, say recovery was a roller-coaster but survivable and not too bad, but then when you are going through it yourself it’s a whole different ball game. So for me personally looking back on recovery, now it seems like it really wasn’t all too bad, although I know for a fact there were really rough times and I hated it, but once you get to a certain stage you forget about that and it all seems like it wasn’t that bad. Hence the reason unless you talk to people in the different stages of recovery, you will never get super honest answers on how recovery is, because the further you get out in your recovery period, the easier everything seems to have been.  But the term roller-coaster is completely accurate, recovery is a crazy ride.

But for me recovery wasn’t as bad as it was for a lot of people, and even now I am still in the recovery process, most people say it lasts for around 2 years, and even then it is a lifelong battle. I did luck out in a lot of regards in my recovery, I didn’t end up with some of the nasty chemo side-effects that plagued some people and I also never really had any real bone pain, which is fairly common amongst veterans. The first few months sucked big time, there is no nice way to put it, at times it was pure hell. I never knew what to expect day-to-day, some days were great, others felt like a relapse, which is always a horrifying feeling, even though you know it’s temporary and normal and will go away, still scares the shit out of you.  Energy level totally sucked at the start, fatigue was an issue then.  Old MS symptoms popped up all the time, it was a guessing game at what would pop up next.  Would the bladder decide to get all spastic, hands go numb, MS hug, fatigue, cog fog, and the list goes on and on.  But through it all I tried to remain pretty positive, which is so important during recovery and something Dr. F really preaches. And as time went on the good days outnumbered the bad and the good days were really good and it was just amazing, but then the bad days would hit and then that would really drag you down both physically and emotionally.  Recovery is far worse than the treatment itself and it really can be a battle and not anything to take lightly.  And as I said above, recovery to me really is lifelong.  Even with the disease activity stopped, the damage is there, and while some may reverse itself, a lot won’t, so throughout life you will be plagued with various MS symptoms when you get too tired, stressed, sick, too hot, the list can go on and on.  And it sucks big time, but you know what, it’s what I got to deal with, so I suck it up and enjoy life, because I know how much worse it could be.

As I wrote in my last blog post I did have a one year follow-up visit with my neurologist, I opted to not do a MRI, mainly because it is just too expensive and it would just tell me what I already know. My neurologist actually stated at the appointment that he felt there was no need for any future MRIs unless the MS became active again, and even then what the hell is the point really, I mean it’s not like the MRI changes anything in that regard. But at that appointment he did look over the MRI I had at the 6 month mark and was still amazed at what it looked like.  As I said back then, several of my lesions disappeared and most of the rest got much smaller in size, the big deal about that being that my gigantic c-spine lesion shrunk in size a fair bit, which is really unheard of.  I passed all the tests he gave me, and my EDSS score is a big fat ZERO. My disease activity has been halted!!!  But even he said that I am stuck with the existing damage, so unless my body continues to heal itself, I’ll be plagued with old symptoms randomly throughout life, which I am okay with. I also did blood work at the 1 year mark as well, which I will discuss more later in this post.  My last couple blog posts actually dealt with my neuro appointment and 1 year blood work, for those that are curious on reading those.

So let’s go over some things about recovery.  Things can go wrong during recovery and they occasionally do.  I had a DVT in my left jugular vein obviously from the CVC that was in there for several weeks.  I was on blood thinners for a while and with DVTs they usually end up being reabsorbed by the body at some point in time in the future.  But I also do still take supplements to try to keep my platelet count on the lower end of the spectrum, which most of my blood work has shown that to be accurate, which means I bruise and bleed easier than a lot of people, but I’ve always been that way, and even when completely healthy pre-MS my platelet counts were on the lower end of normal and I’ve always bruised easily. My stem cell sister from Australia ended up with engraftment syndrome that almost killed her because the doctors couldn’t figure out what was wrong with her shortly after she returned home.  I mean literally at one point in time doctors gave her 24 hours to live if they couldn’t figure it out, terrifying for her and her family and seeing pics of her in that state, but also alarming for others who have and would be undergoing treatment as well wondering if it could happen to them. It’s very rare but can happen.

There is also the fear of developing AVN (Avascular Necrosis).  This doesn’t just pertain to those who have undergone HSCT, but for anyone who has ever taken steroids, which basically almost everyone who has been diagnosed with an autoimmune disease has taken steroids. Oral steroids like prednisone can lead to AVN, but of course the major culprit is IV steroids, methylprednisolone (Solu-Medrol).  I mean very few people with MS have not done at least one round of IV steroids for a relapse.  IV steroids have a higher risk of AVN associated with them because they are given in such high doses.  Some research shows that just one 4-5 day course of IV steroids gives you a 1 in 10 chance of developing AVN, the odds are not in your favor.  However I don’t think many doctors opt to tell people that before they give the IV steroids.  I mean it is listed in the side-effects, but they don’t tell you how often that happens.  So of course if you take many courses of IV steroids in your life, or say in the case of HSCT when you basically are on some type of IV steroid most of the time, your risk of developing AVN probably gets higher.  I mean some of the HSCT experts on the HSCT groups would say that isn’t the case, but there are sure a shit-ton of people who had HSCT done that did indeed develop AVN, and as more and more people have it done, there is certainly much higher numbers than 1 in 10 that are developing AVN.  One of my stem cell sisters was already diagnosed with AVN in both hips and will be undergoing hip replacement surgeries later this summer.  A lady who was treated the month after me also is undergoing double hip replacements this summer and in her situation may need to have other joints replaced in the future.  Plus I know numerous other people who have needed to have this done.  Typically many of them are older patients in their 50s, but it also is popping up in patients in their 20s and 30s as well.   So basically if you undergo HSCT there is a damn good chance that you will need joints replaced in the future, although if you ever had IV steroids, the odds are not in your favor.  So there is always that thought in the back of your mind.

Also in the time since I got home from Russia I’ve had a facebook friend of mine undergo HSCT and has had various issues happen since getting home, including what appears to be recurring sepsis, which seems to not be as rare as one might think.  Also a lady that followed my blog passed away during treatment from what they assumed to be a severe allergic reaction to the chemo.  It’s difficult for me to write blog posts writing how things are going for me, when others are struggling with recovery, it’s almost like rubbing salt in their wounds, but I said from the start I’d be completely honest in my blog posts and that is what I am doing.  It’s why I’ve done controversial blog posts in the past, because I think people need to know the truth.  I mean HSCT is not a basic medical procedure, it has a very real risk of death and there are a ton of side-effects that can happen in recovery, some not so bad, but some can kill you.  And then the treatment can and does fail for some people.  It’s something I feel everyone should research heavily prior to having it done and understand everything that can happen.  That being said, MS or other autoimmune diseases will also kill you and depending on how bad it is, it will destroy your quality of life, so for many people it’s worth the risk and the recovery period.

So now the part of this post that people are probably most curious about, how am I doing 12 months after HSCT?  What were my MS symptoms pre-HSCT, how have they changed after HSCT and what are they like currently?  For those who have not followed my journey, my EDSS score prior to HSCT was 1.5, I was diagnosed with RRMS in February 2015 and had symptoms since May 2014, my MS was very aggressive in my C-spine, I was relapsing every 3 months even on DMDs. My second major relapse really spiked my EDSS score for a while and I pretty much had to teach myself how to walk again and struggled with many things for months. So without further ado, here’s a rundown.  I copied and pasted this from my 6 month post and am adding on the 12 month update.

Vision Problems/Optic Neuritis:  So pre-HSCT vision problems were one of my biggest issues.  I was diagnosed with optic neuritis in both eyes (left eye being far worse) which they say is super rare, but in talking to those with MS, seems pretty freaking common. Pretty much all the time I had very foggy/blurry vision in one eye or the other.  Rarely was it both eyes at once, but basically I could barely see out of one eye or the other at all times.  I also had issues with getting my eyes to focus together, it’s hard to explain that one exactly, but those who have dealt with that, know what I mean.  During bad flares of that I also would have excruciating eye pain, to the point you’d want to rip out your eye to relieve the pain. While I was in isolation in Russia after getting my stem cells back, my vision went 100% back to normal.  No fogginess and my eyes had no problem focusing together anymore.  At the time it was hard to say if it was all the steroids causing that or if it was the HSCT procedure.  Well since being home my vision has been perfect in that regards, no issues at all.  At the 6 month mark, my vision is back to normal.  The only issue I do still have with my eyes that will probably stick around is floaters in the eyes, especially when in bight light, but I’m fine with that, I’m just happy to see clearly now.  Now onto the 12 month mark, my vision is still as it was at the 6 month mark.  Still have the floaters in my eyes, but my vision is still normal.  I mean from my pre-MS days I do have a bit of color loss but otherwise I can see normally.  I do however think since the last time I went to the eye doctor, which was pre-HSCT, that my eyes have actually improved a bit, and once my new health insurance kicks in and I have vision insurance, I really need to get my eyes checked and get my contact prescription updated.  So no more optic neuritis for me.

Cog Fog:  Pre-HSCT this wasn’t a huge issue for me.  It was an issue, but not one that majorly impacted my life. I had a lot of times when I didn’t feel with-it, where I would have major problems focusing, would often forget words and completely forget what I was saying.  While in isolation in Russia one day it was like the fog lifted from my brain, I could think clearly again, really an odd feeling when that just happens suddenly. Since I’ve been home that has come and gone at various times, usually it happens when I am overly tired or sick.  But at the 6 month mark that issue has pretty much gone away. But on days when I am lacking sleep it does pop back up.  Caused by existing damage in the brain that may or may not ever go away.  At the 12 month mark this isn’t a huge issue for me anymore.  I mean it does pop up a bit when I’m sick, stressed, or overly tired but in no way is it anything like it was pre-HSCT.  I won’t lie there are still times when I am talking to people and after they say something it takes me a few seconds to completely process what they are saying before I come up with a response, my brain occasionally needs a bit longer to process things, but as time goes on this is getting better and better.  When I am tired I also do occasionally fuck up words that I am trying to say, again it is getting better with time. I think a lot of that will just depends on how the brain heals itself and how it rewires itself, but a year later, it is way better than it was before, can’t complain.

Arm Weakness/Leg Weakness:  Pre-HSCT this was a major issue for me at times, especially when it came to arm weakness. I struggled to lift my youngest child who weighed less than 20 pounds, struggled to move things around and had no grip strength in my hands at all.  Literally if I would try to grab onto monkey bars and hang, my hands and arms would give out and I would fall to the ground. My legs often would give out as well and I’d fall over.  I couldn’t walk for long distances because my legs would just give out.  Horrible for a person like me who is super outdoorsy and loves to hike. I could not run at all, literally if I tried, I would fall on my face, my legs couldn’t handle the force of hitting the ground when it came to running. During HSCT in Russia this really came out in full force with the chemo, I really struggled to push open the door to escape the hallway to get outside, it also continued after I was out of isolation.  After I got home this gradually got better.  I also did push myself and exercised to try to improve this aspect.  My goal pre-HSCT was to be able to get across a set of monkey bars again without falling down.  I managed to accomplish that about a month or two ago and could even jump down from them and land on my feet and walk away without my legs giving out and crashing to the ground, I posted a video on my facebook page of that.  I also am able to run again.  I am not comfortable running fast, but I can run.  So at 6 months out I’m doing pretty good in regards to this.  There are still good days and bad days when it comes to this, I’m still on the recovery rollercoaster, so some days running would probably not be a good idea.  So at the 12 month mark I think this hands down is the biggest improvement I’ve had, it’s been amazing. I started working around the 9 month mark after HSCT, I work at a pretty demanding job, it involves a lot of walking and a fair bit of heavy lifting. On average at work I walk between 7-10 miles a day and I lift quite a few boxes that weigh 40-60 pounds.  It was a bit difficult at the start, but now it’s no big deal and I can do it with no issues and a friend told me I probably do more physically demanding work than most people in their early 20s that are completely healthy, so there’s that. So the arm strength and leg strength are pretty good, are they what they were pre-HSCT? No, and they most likely never will be.  I do still have a big of leg weakness when I get overly tired or stressed, usually on that damn left leg, but it’s not that bad.  I can run now, which that in itself is just fucking amazing, considering at the start of my MS journey I couldn’t walk by myself without falling over. Do I feel comfortable running? Not really, I won’t lie.  I don’t trust my body yet, it’ll take quite a while to regain the trust of my legs, I’m honestly too scared that my left leg would give out and I’d end up falling and hurting myself.  But you know I’m fine without running, I’ve never been a runner and don’t have the desire to start. I’m content with where I am with this.  So all in all at the 12 month mark, I can’t complain.

Dizziness: Pre-HSCT this was an issue that I battled with off and on.  Some days it was really bad, other days it wasn’t there at all.  Temperature changes really made this issue flare up for me.  Post-HSCT this issue has pretty much gone away for the most part.  It does pop up from time to time, usually when I’m overly tired or am not eating very healthy.  Following a diet of not eating much in the way of processed food really seems to help with this issue. So at the 12 month mark I really don’t have much of an issue with this anymore, it does pop up once in a while, but not to any bad extremes. When I was sick a few months back it came back pretty bad, but when I got over that, it went away.  I do notice at night when I am really tired I can get a bit dizzy, and then if I do get over-heated it does pop up a bit until I cool down, but it has improved quite a bit. I’d love if it would go away completely, but who knows if it will.

Balance Issues/Vertigo: Pre-HSCT balance issues were a big problem for me, especially during relapses.  But even on good days my balance really sucked, I couldn’t walk a straight line and I couldn’t balance on one foot at all, attempting yoga and doing many types of exercises were out of the question because I would constantly fall over when trying to do certain poses. This was depressing for me because in the past I had amazing balance, so not being able to do much without falling over really limited my past activities.  Vertigo prior to HSCT was really bad during relapses and was off and on otherwise.  It didn’t really affect daily life too much for me, but a lot of times in the evening when I was tired, it would really come out and I’d have to just lay down because everything was spinning.  Post-HSCT my balance has greatly improved, I doubt I’ll ever have the amazing balance I once did, but I can now balance on one leg and at least do yoga poses and exercise without falling down.  I’m not as concerned about getting off-balance when walking and falling over like I was pre-HSCT.  Vertigo isn’t really an issue for me anymore, sometimes when I am massively over-tired or sick it will come back, but considering it isn’t really an issue anymore.  So at the 12 month mark this has greatly improved.  My balance is fucking amazing, yep it’s true.  Is it as good as it was pre-MS, no, but then again I had way better balance than most other normal healthy people, so I’d say my balance is pretty much like most healthy people at the moment. I can balance on one foot, hop up and down on one foot, stay in various odd yoga poses for long periods of time.  I can run on a super narrow log and jump while doing that, without falling off, so I’d say it is much improved. The vertigo has greatly improved as well.  I don’t really battle this much at all, except when I am sick or sometimes when I am overly tired.  So I’m happy with the improvements here.

Heat Intolerance/Cold Intolerance: Issues almost everyone with MS faces. I didn’t have MS all that long before undergoing HSCT, so I really only had 1 pregnancy free summer and 2 winters with MS to base my experiences on, but this wasn’t as big an issue for me as it is for some people.  I live in an area with temperature extremes, 100+F temps in the summer and way below freezing temps in the winter. The heat bothered me most when the temp was 90+degrees outside and when it would get 100+ it often would immobilize me.  Days like that would make me not be able to really do anything at all, other than the bare minimum needed to survive. In the winter months, the cold would make me have bad spasticity and muscle tightness in my legs where it would make them feel super heavy and hard to move.  So it was a lose-lose when it came to seasons, spring and fall were the best.  Post-HSCT this has seemed to improve.  We had another hot summer here and there were only a few super hot days where I found it hard to function, but had no problems being outside in the sun and enjoying life, things I could not do the year before.  As for cold weather, we are just approaching that season now, but so far the leg muscle tightness and heaviness has not been as bad as in the past.  It is still there at times, but not as problematic as before, we’ll see how things go as winter progresses.  So the 12 month mark, I made it through the winter and I’m back at another summer. Winter wasn’t bad for me, we had some super cold days and a ton of snow.  The cold did cause some muscle tightness in my legs, but not to the extent as before.  I however can always tell when it is going to rain and or snow because the atmospheric changes do cause my leg muscles to tighten up.  So I guess when older people joke about how it is going to rain or snow because they have more aches and pains, I guess I’ve reached that status in my life now, haha.  At least I’m more accurate than the local news meteorologist….  As for the heat, we’ve had a couple weeks of 90+degree temps, with a fair number of days going over 100 degrees, that is in Fahrenheit. I’m doing well in the heat.  I do struggle a bit in the mid-morning when it starts to really heat up, my body takes a while to adjust to the hot temps because it literally goes from the 50s or 60s to over 90 degrees in under 2 hours. But once my body gets adjusted it’s not too bad.  I’ve spend some of my days off working out in the heat and I don’t have any issues.  Which considering pre-HSCT I’d basically be stuck in the house being unable to do much of anything during the hot temps, I’m happy with the improvements.

Fatigue: Everyone always asks about fatigue, which I think is the biggest issues with MS.  Pre-HSCT fatigue wasn’t a huge issue for me, usually when it would occur it would be in the middle of the day when I just couldn’t function for a while, then suddenly I’d be back to normal again for the rest of the day.  But I could never get enough sleep.  It was a struggle to stay up till 10pm and I’d often go to bed earlier than that, and then in the morning I would have slept in super late if I could have. Post-HSCT this issue hasn’t been too much of a problem.  I’m still in the rollercoaster stage with ups and downs, but I don’t have all too many days where I feel fatigued during the afternoon, seems like on days that it happens I’m overly tired or we have some crazy temp changes going on outside. And as for sleep at night, I no longer have issues staying up late at night, I often stay up till 11pm or midnight and get up around 7am. In fact during the presidential election I stayed up till 2:30am watching it play out and had no problems with that.  Given I was a person that pre-MS would only require 4-6 hours of sleep a night, it appears I’m getting back to that routine, although I do try to get 6-8 hours a night.  So I am no longer worthless every evening and I can actually enjoy some free time after the kids are in bed.  At the 12 month mark fatigue isn’t really an issue for me anymore, it does pop up once in a while, normally when I am lacking sleep, which occasionally does happen when my youngest refuses to sleep at night, and while it sucks, I do know that when I catch up on sleep it will go away. I do work now and I tend to work afternoons and evenings, so I often stay up till midnight or later every night and get around 7-8 hours of sleep each night and I do just fine with that.  Some days I wake up earlier and do fine with around 6 hours of sleep.  I do however try to get 7-8 hours of sleep each night because I do understand how important that is for brain health. So in that regards I’m mostly like a healthy person would be.

Numbness/Tingling/Pins & Needles Sensation:  Hands down this was one of my worst issues pre-HSCT.  For those who have followed my blog you know that my MS was aggressive in my c-spine, I have a large lesion load there and I have one huge lesion that almost covers my entire spinal cord, when diagnosed initially my neurologist stated that I was lucky that this lesion didn’t paralyze me and he said he doubted I’d be able to walk normal again after I recovered from that relapse, just because it is in the worst spot possible to have a lesion in the c-spine. After several months I was able to walk fairly normal again, but the one issue that constantly remained was numbness, tingling, and pins and needles feelings in my hands and feet.  Up until I had HSCT my feet were 100% numb, I had pretty much zero feeling in them unless I was on steroids, I constantly would crash my feet into things and horribly bruise them and not even feel it.  My hands also were mostly numb to the point where I would wear cutting gloves when using knives so I wouldn’t cut myself and I also had to be careful around hot and cold things because I couldn’t feel temperature at all. I also would often have the pins and needles sensation all around my stomach/abdomen region which was really irritating when touched by clothing.  Post-HSCT these thing have improved somewhat.  Dr. F in Russia even told me the chance of ever regaining full feeling back in my feet probably would not happen just given how bad my lesion is and it’s placement. I do have almost full feeling back in my hands, I do not know if it will ever come back completely, but I have enough feeling to at least be able to cut things safely, feel heat/cold and feel textures.  As for my feet, I have regained some feeling back in them.  I can feel pain if I crash them into things and can feel things if I touch my foot on them, although tickling them gets no response out of me at all.  I really don’t know if that issue will ever improve, but I’m content with how it is. Then with the pins and needles feeling around my stomach/abdomen it isn’t as bad, but it does come and go periodically.  With all the symptoms they do periodically worsen at times and then get back to what I’d consider their new normal.  It’s much like before you have HSCT, you have the damage there and any little thing can make the issue flare a bit, lack of sleep, sickness, stress, etc.  So at 12 months how are things with this.  This is the symptom that drove me crazy at the start of my MS journey, I mean the pins and needle feeling in your hands and feet non-stop for months takes a while to learn to live with, it just sucks big time.  You get used to it and it becomes part of life, but jesus at the start it is miserable. Let’s start with my hands.  At times I have full feeling in my hands, it is literally the strangest feeling ever to have that, sounds strange I know, but when they are numb for so long, it’s bizarre being able to feel things. At times they are slightly numb and it’s difficult for me to feel with my finger tips and to pick up small objects, it comes and goes, and I fully acknowledge that is just what happens when you have the damage, I mean I’m content having any feeling in my hands, seriously don’t take that shit for granted, it sucks when it is gone. Now onto my feet, so this is where I’ve been told to just accept the lack of feeling in my feet, it’s there and part of life.  As of now I do have some feeling in my feet, I’d say depending on the day it is between 50-75% of normal feeling.  I do still have the pins and needles sensations part of the time, and while I can feel hot and cold and pain, I don’t have full feeling in them. And you know what, I’m cool with that, considering how bad they were at the start, any improvement is good.  And for the pins and needles sensation around my abdomen, the only time that pops up now is when I am on my period and a few days prior to that.  So I always know when to expect that.  So all in all I can’t complain.  All this is caused by my large c-spine lesion, which in the MRI was healing itself, but the damage was done and the body has to rewire itself, so we will see what the future holds, never really know.

Lhermitte’s Sign: For those unfamiliar, it’s common with MS.  You bend your head forward or a certain way and you have an electric shock feeling shoot down your body and through your limbs, it can be painful for some, but usally it’s just more uncomfortable.  This was an issue pre-HSCT that I had most of the time.  Post-HSCT this hasn’t really been an issue.  When I am overly tired or stressed it pops back up, but for the most part it is gone.  For me I don’t consider this a bad MS symptom as it really didn’t interfere with my life, but thought I’d mention it anyways.  At the 12 month mark this is much like it was at the 6 month mark.  It pops up once in a while, then goes away.  Seems to often occur more frequently after I’ve done more lifting and bending at work, so often in the evening, but not an issue in the mornings.  It’s a once in a while thing, so who knows.  It isn’t really a big issue for me, never was.

MS Hug: Inappropriately named, as it should be called the MS Grip of Death or something similar. Pre-HSCT this issue would pop up for me once in a while, it was common during relapses, times of stress, and then sometimes it would just show up for no reason at all.  It’s an annoying symptom to say the least.  Post-HSCT I haven’t dealt with that issue at all and I’m thankful for that.  At the 12 month mark, still not really an issue.  Did pop up a bit when I was sick, but not since then, hopefully it’s gone for good, time will tell.

Spasticity/Muscle Tightness:  Pre-HSCT I had this issue in my lower legs a lot of the time.  I really think legs are the most common place for this to occur for those with MS. For me this was more seasonal, it happened more in the colder winter months and then also would pop up with huge temperature swings year round. I also occasionally would have it pop up in my neck. It wasn’t a life changing issue for me, it didn’t really affect my walking or life, but it did make it impossible to run and made exercising difficult and I couldn’t walk for long distances without my legs really causing me issues. Post-HSCT this issue has still popped up once in a while and stills plagues me a bit now that the weather has cooled down for the year, from seeing veteran’s discuss this issue, it seems common for these seasonal issues to continue to stick around, pre-existing damage may not repair itself so you are stuck with it. But for me it isn’t as bad as it was before, it doesn’t affect how long I can walk and it doesn’t affect exercising at all.  Only thing it really affects me with is running, while i can still run when it is acting up, I am more concerned I’d fall and hurt myself. Since HSCT this issue has come and gone when it comes to my neck, it’s an issue I’ve battled since being home, although I don’t necessarily think this is related to the MS anymore, but more related to have the neck line in, many people have these neck issues after returning home, and for most it subsides after a year or two.  And it isn’t caused by the neck line itself, more just because of how you position your neck when the line is in, and for women especially and those with less neck muscles, the issue can be worse.  So hopefully that will eventually go away, until then I occasionally use muscle relaxers and do a lot of stretching and that does solve the issue.  At the 12 month mark I am happy to say that I have not had any neck spasticity/muscle tightness issues in months and hopefully it stays that way.  I do occasionally have muscle tightness in my legs during the winter or when it is going to rain or snow, but it’s not as big of an issue as it was in the past.  I think it will always stick around, but considering it’s not that big of deal.  As I mentioned in the past, I certainly wouldn’t attempt running when it is acting up, but I don’t really plan to take up running, so not a big deal.

Bladder Issues: An issue not talked about much publicly by those with MS, because who wants to discuss such a personal issue with others, well apparently except me at this moment, haha.  I did not have much in the way of bladder issues before being treated for HSCT, but it was there. I kind of had it on both ends of the spectrum, I’d had times when it was a struggle to actually get myself to pee, then there would be other times when it would be a rush to the bathroom because I knew I had to pee and some would come out regardless. I’d also have bladder spasms at times which makes you feel like you have an UTI when you really don’t. The joys of MS affecting your bladder. Post-HSCT I haven’t really had any issues in this regard, sometimes I still do have bladder urgency, but never to the point of thinking I was going to piss myself.  I do still have some bladder spasms at times, but they are far and few between. This issue is one that does seem to improve for many after HSCT.  So at the 12 month mark, this isn’t really a huge issue.  If I drink a lot of liquids and feel like I need to pee, I make sure that I actually go to the bathroom and pee otherwise I probably would leak a bit, although it’s hard to say if that is MS related or childbirth related, since that seems to happen to a lot of women in general as they get older. No MS related bladder spasms either.

Endometriosis: This is not caused by MS, but since there is a strong correlation of those having MS also having endometriosis, I thought I would mention it. Pre-HSCT my endometriosis pain was horrible, especially when ovulating, during my period and a few days pre and post period, then also it would randomly pop up throughout the month. My pain was severe at times and really annoying. Post-HSCT I have had my monthly cycle return after about 3 months and since my hormone levels returned to a more normal level I have not really had much in the way of endometriosis pain.  I still can tell when I ovulate as there is slight pain, and periods are probably a bit more uncomfortable than they are for a regular person, but the pain has subsided for the most part.  I assume it’s mainly because of muscle tightness occurring in the abdomen because of MS and afterwards if that issue is resolved there is less pain happening.  I really have no idea, but for me the pain has improved, so I’ll take it!  At the 12 month mark this has still really improved since pre-HSCT times, but for the past 2 months my hormones have been all out of whack and my periods are all fucked up, they had been fairly consistant at every 28 days, then I skipped a month, then they started coming every 2-3 weeks, which fucking sucks.  So I’ve had more endometriosis pain due to all the damn ovulating and periods.  But I am fully in peri-menopause now, so I have a 50-50 shot of going into full menopause, which I still am really hoping for, or going back to regular cycles.  I think I’ll be stuck in several years of hell until then.  So all in all, pain better than before, but still there a bit.

Anxiety/Mood Swings/Headaches: I think this really comes down to where your lesions are in your brain if you have these issues or not. For me after being diagnosed with MS I’d often get bad headaches that turned into migraines.  Not super common but would usually have one a month.  I also would have killer mood swings for no apparent reason.  Then after a relapse in September 2015 I started having some anxiety attacks where my heart would go crazy and it was quite unpleasant. Post-HSCT I do still have some of these issues.  I do occasionally get headaches but most are related to being dehydrated so I don’t think they are MS related. Mood swings do still happen at times, but they aren’t as common or severe as before.  And then anxiety issues do still pop up for me, not to the extent as pre-HSCT but they do happen and I don’t know if that is related to MS lesions or the chemo.  As I’ve stated in previous blog posts anxiety and depression are very common side effects of the HSCT treatment itself.  At the 12 month mark the headaches aren’t an issue at all really.  I had one bad migraine a few months ago that lasted around 12 hours, nothing crazy, and the only other headaches I’ve had since then were sinus ones related to my allergies and being all congested. Mood swings are much better honestly, I can notice a huge difference there.  This is something that is improving all the time, but I’d like to see a bit more improvement there, lack of sleep and stress can really trigger those. As for anxiety….Well fuck, it still pops up and I hate it, absolutely hate it, but unlike before when it would just pop up out of the blue for no reason, now it’s caused by stress, the last couple months have been fairly stressful in my personal life, my youngest child has some medical issues and these last couple months were all sorts of appointments and all the shit that goes along with that.  But all that stuff is completed now and my life feels so much more stress-free now so my anxiety levels have really dropped as well. So we will see how that improves in the future.

Back Pain: This is an issue that many doctors and neurologists claim is not related to MS in any way, shape or form.  I disagree.  And back pain seems to be a symptom many with MS have. Throughout my life I did occasionally have a bit of back pain after working certain jobs, etc. but it was only after I was diagnosed with MS that my lower back pain got so much worse.  At times it was excruciating by the end of the day.  My back muscles were so tight that no amount of massage would help them at all. I assumed it was just something I was stuck with.  While I was in Russia in isolation I noticed one day that my back pain was gone.  I assumed maybe it was because of the beds there or how I was sleeping, but the pain continued to stay away after I got home. Now 6 months later I rarely have any lower back pain at all and my muscles there are not nearly as tight.  For me I think that the MS was causing my back muscles to get super tense and caused me horrible pain.  At 12 months this is greatly improved.  I have pretty much no back pain at all, I might be a bit sore after doing a bunch of lifting at work or doing certain tasks around the house, but nothing at all like it was pre-HSCT.  So regardless of what doctors say, I so say it was caused by the MS and isn’t really an issue anymore.

Swallowing Issues: Back to my pesky large c-spine lesion causing me issues. After being diagnosed with MS I started developing some swallowing issues.  Basically where it felt like there was always a large lump in my throat that wouldn’t go away.  It would make swallowing difficult at times especially with certain foods. This wasn’t always an issue with me, it would show up for a few weeks, then disappear for a month or two, then pop back up again. Post-HSCT that issue has pretty much disappeared.  I do have times where I feel I do have a lump in my throat, but those occasions are far and few between and I almost think that when that happens now it may be related to my acid reflux issues that I’ve been dealing with as it usually occurs when they flare up.  At 12 months this isn’t really an issue for me anymore.  And hopefully it stays like that.

Nerve Pain: Pre-HSCT this was an issue that would come and go for me.  Luckily I was fortunate enough to not deal with this on a regular basis and I truly feel sorry for anyone who deals with it every day, it is brutal. But once in a while it would flare up, typically for me it would start in my spine and shoot pains down one of my arms, usually my left arm and usually would stick around for 1-2 weeks and then just disappear for a few months. Post-HSCT I haven’t dealt with this at all, so fingers crossed it is gone for good.  At the 12 month mark I am happy to say that the nerve pain seems to still be gone and I do hope it stays that way.  I’ve had a couple days when I’ve had nerve pain in my left arm, but it usually is temporary and short-lived.  Doctors often say that you have pain, tingling, and some numbness when nerves are trying to rewire themselves, so that’s what I’m hoping for.

So there is my update on that.  All in all I am happy where I am at in recovery.  HSCT has given me a second chance at life and I’m able to do so many things that I wasn’t able to do before.  I can mostly live my life like I did pre-MS. They say improvements can continue up to 2 years afterwards and many people have seen improvements way after that.  It’s really hard to say what will happen in the future, the body is amazing and the brain is even more amazing when it comes to healing itself.  Plus I think everyone is hopeful that someday there will be myelin repair drugs that will repair the damage that is done.  But considering where I was in the past and how bad things were at one point in time, I’m happy with where I am now.  Of course I’d like to be back to where I was pre-MS when I could do whatever I wanted and have no limitations, but you can’t change the past and there is no reason to dwell on things that are lost, you just gotta move on, embrace the change and live life to the fullest.  You gotta have a positive attitude and yet be realistic, there is a chance this fucking MS could come back in the future and I don’t take one day of my life for granted, because I know just how fast that all can change.  I got a second chance at life and I’m making the most of it.

So now let’s discuss blood work numbers.  I opted to display them in table form, so you could see the important numbers and how they have changed since I’ve been home.  And then I also listed some blood work numbers from before I was diagnosed with MS and before I had any MS symptoms so you could see what they looked like prior to HSCT and then I also listed the numbers from my pre-testing in Russia and then what my numbers were in my final blood work done before leaving. So I have the dates listed for when the blood work was done and then also color coded it as well for easier reading.  One color is pre-MS, next is when I was in Russia and then finally the last color is everything since being home.  Normal averages for each of those categories is listed at the top of the graph in parenthesis. Here’s the table:

Date WBC

(3.8-11.0)

RBC

(3.5-5.5)

Hemo-globin

(11.2-15.7)

Platelets

(150-420)

Neutro-phils

(1.9-8.0)

Lympho-cytes

(1.4-4.8)

5/21/2014 5.8 4.28 13.7 187 4.33 1.10
11/27/2014 7.0 4.20 13.0 235 5.03 1.55
2/19/2015 6.2 4.59 14.3 229 4.65 1.10
4/26/2016

(Arrival)

6.02 4.3 13.5 180 1.50
5/24/2016 (Leaving) 7.46 3.4 11.1 338 0.50
6/1/2016

(Day +21)

4.0 3.58 11.6 377 3.05 0.40
6/5/2016

(Day +25)

5.6 3.55 11.7 335 4.33 0.47
6/7/2016

(Day +27)

5.9 3.83 12.3 378 4.61 0.51
6/21/2016

(Day +41)

6.0 3.80 12.4 200 4.83 0.64
7/21/2016

(Day +71)

4.2 4.04 12.9 214 3.15 0.58
8/18/2016

(Day +99)

5.1 4.08 13.2 199 3.93 0.61
10/2/2016

(Day +144)

4.88 4.32 13.4 184 4.07 0.43
11/9/2016

(Day +182)

5.21 4.43 14.0 195 3.98 0.65
3/3/2017

(Day +296)

3.5 4.25 13.1 142 2.21 0.81
5/24/2017

(Day +378)

3.45 4.35 13.7 163 2.37 0.78

So as you can see my numbers have been all over the place since being home and that is completely normal.  Numbers can take up to 2 years to get back to normal and even then they fluctuate so much person to person.  Some people are always on the low end of the charts even when healthy, others on the high end, a lot depends on genetics.  So basically at the one year mark my lymphocytes are finally in a normal range for some testing facilities, some say 0.70 is the low end of the range.  Even pre-MS my numbers there were low, so it’s just how it is, one of my daughters is the same way.  So really this table is just to show how my numbers have been throughout everything, everyone is different.  My WBC numbers are still a bit low, but now that summer is here and people in general tend to be more healthy, I’m sure my counts are a bit better.  Everyone is happy with my numbers and that’s what matters.

So one year out, what’s my thoughts on the whole journey.  I’m still happy with my decision to have it done, it truly was life-changing for me, but wow recovery was rough at times.  I did luck out on the side-effects and didn’t have a whole lot of them compared to some people.  The one real issue I am still dealing with at this moment is hormone levels, my body is basically in peri-menopause and my hormones are all out of whack, literally.  I was having periods on a normal schedule, around every 28 days, then skipped a month and now am having them around every 2 weeks for the last couple months.  I could go have blood work done to see if I am indeed going through menopause, but many younger people have done that and the blood test shows that they were indeed in full menopause, and then after a year or two, they are back to normal periods.  So really I’m just riding it out and seeing how it all goes.  Sucks, but such is life.

Now onto the oh so important topic of hair.  Mine is a mess, a complete and utter crazy horrendous mess.  A lot of people trim off a few inches to get rid of the chemo curls. I’ve just let mine grow out so it will get long enough that I can pull back, but at times it is ridiculous. It’s like a perm gone wrong.  It ranges in length from 4-6″ depending on where it is on my head, I could rock a tiny pony tail on the top of my head if I would chose too. Now my eyebrows and eyelashes are still struggling to come back, they are sparser than before and they fall out fairly easily.  Hopefully that stops happening, but considering everything I went through, I can live with that.  So here is what my hair currently looks like at the 1 year mark.

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And then for fun, let’s do a slideshow of hair pictures throughout the first year.

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So onto the part of my post that I do every update, where I discuss my monthly goals of exercise, yoga, meditation and diet.  Most of which I completely fail at every month, but I can admit that, so it’s all good.  As for exercise, I really don’t do much real exercise in general.  I walk 7-10 miles a day at work, which is normally 4-5 days a week and do a fair bit of heavy lifting there as well.  My days off I keep busy in the garden, dealing with firewood, playing with the kids, and other things that keep me busy.  I do try to ensure that I get in at least a few miles of walking every single day, which I normally accomplish.  I will say that I do feel much better when I do a fair bit of walking or actual hard work every day, I’ve always thrived on that and especially after I started working, it really helped with my recovery.  A lot of my lingering issues really cleared up when I started being a lot more active.

Yoga and meditation, yeah not really happening much.  I just don’t have the energy for yoga after work, I work later into the evening, so when I get home I just want to shower and chill until I go to bed. And then in the morning, it really does take me a couple hours in the morning to get fully functional, so doing yoga bright and early really doesn’t work for me.  And most of the time, it’s one of my kids that is up before me, and attempting to do yoga with my youngest would just fail miserably, literally she would be climbing me the entire time. So really the mornings and evenings are either me time or family time.  When I do get the rare moments of time to myself, I do just enjoy sitting outside, breathing in the fresh air and just taking it all in. In my younger days I spent a ton of time in the woods working various jobs, and a great deal of the time I was working by myself, so my happy place is just being outside enjoying nature. And the meditation is still a complete and utter fail, I really just cannot grasp how people do it.  I try and fail and try and fail time after time.  I honestly have an incredibly short attention span and it’s hard for me to focus on one thing for long periods of time, so no matter what type of meditation I attempt to do, my mind constantly wanders. But just being alone outside for a while I think works as meditation for me, gives me time to just think about nothing and just enjoy nature. Before I go to sleep each night I do try to do some breathing exercises and also a bit of meditation, normally I fall asleep during my attempte meditation, so I guess perhaps that could be considered a success.  Just really not my thing I guess, but I do plan to keep at it.

Diet….another fail for me.  Eating healthy may seem super easy, but really it isn’t so easy when you have a super busy schedule.  I know, I know I am full of excuses, but life is crazy sometimes. I’m about 50-50 on healthy eating right now.  It is something that I do really want to do better at in this upcoming year, and as I’ve mentioned in the past I do follow a modified paleo diet.  I honestly feel tons better when I eat no gluten, no added sugar and avoid processed foods, but some days I break down and give in and I’m okay with that. I do plan to be a lot more strict with following a paleo type diet in the future as one of my children has some medical issues and that type of diet would benefit her, so in the future my diet will be better.  It also is really difficult to eat a healthy diet that is high in veggies when you live in an area like I do.  Most stores do not sell a wide variety of veggies in general, finding organic in most things is damn near impossible and it’s so hit and miss on what stores will actually have when I go shopping.  Normally I end up with about half the stuff I wanted after a shopping trip, because people here just do not eat much in the way of veggies.  I do grow a large garden, but that takes time to grow, so not getting anything from that at the moment.  So diet is really my main goal for the future.  I know healthy eating is important for gut health, I know all about the gut connection to the blood-brain barrier. Plus eating healthier makes me feel better.

Many people with MS take supplements and I am no exception.  I don’t take as much as I did pre-HSCT, but I do still take some regularly and some when I feel I need to supplement them. I do still take 5000 iu of Vitamin D in the summer months and 10,000iu in the winter months.  I take less in the summer because I actually go out in the sun for a while each day, so get it naturally.  I do take an algae based supplement for the B vitamins.  And those are really the 2 supplements I take regularly.  Depending on how I feel and what I will be doing I also do occasionally supplement with magnesium, calcium, fish oil, vitamin C and multi-vitamins.  A lot depends on my diet and plan for the day. I don’t like taking tons of supplements as I prefer to get stuff naturally from food items. I have looked into biotin but haven’t decided what I am doing with that yet. I don’t take any other medications and the only one I took regularly for a while after returning home was the acyclovir, which I stopped after around 6 weeks.  Doctors are so up in the air on what you should take afterwards, my local doctors recommend taking nothing for their cancer patients that have undergone the same procedure, their research shows the meds really don’t prevent anything and do more harm than good. Dr. F at the time recommended 1 month of acyclovir and that was it, other doctors recommend bactrim and acyclovir for 6 months to a year, so that is so individual.  Most people however get a lot more improvements and feel much better after stopping those meds just because they do have so many side-effects that come with them.

As for other things in my life, I am just living life one day at a time and not taking anything for granted. I went back to work around the 9 month mark, it hasn’t been too bad.  My free time is spent with my family.  I am growing a large garden this year, so taking care of that has been a challenge.  Then we have cut down several trees on our property, so been busy with firewood as well.  I absolutely love spending time outdoors and am so thrilled to be able to actually garden and do all this outdoorsy stuff this year, as I couldn’t go it last year because of my new immune system.

So in the end I am so happy to be where I am today.  My MS has been halted, my EDSS score is zero, many of my lesions disappeared or are getting smaller and I’ve had so many amazing improvements.  Am I where I was pre-MS?  No, and I most likely never will be.  But at the same time, it’s hard to remember how life was then, I’ve gotten used to my body and all it’s quirks. I am well aware of how harsh HSCT is on the body and I know there are future risks down the road because of the chemo and there is that chance that one day the MS itself could come back.  But you know what, it still was worth it, because without HSCT I’d be developing more lesions and getting worse and worse.  And since my MS seemed to love my C-Spine, another lesion or two in certain areas in my spine would have completely paralyzed me, messed with my breathing or just flat out killed me. I’ve had people ask me how I’d feel if the treatment ends up failing for me and if the MS comes back in a couple years, and I still wouldn’t regret having it done, having existing damage go away and not get worse for a couple years, I mean that is unheard of on any of the medications on the market. The MS medications have just as many risks of killing you in the future as the chemo does, so any way you look at it, if you have an autoimmune disease in general you just get fucked over in life. And in the future perhaps they will come up with a medication that actually works to regrow the myelin, and that would be able to repair existing damage, which would be great.

So to end this post, I just want to say that I am so happy with where I am today and without undergoing HSCT in Russia and under the amazing care of Dr. Fedorenko I’d be in bad shape now.  It was life changing.  I will continue to post updates on my blog here, but I don’t know how frequently I will post, it will most likely be every couple months now just because I’ve basically plateued on my recovery, so I don’t have much to really discuss anymore.  But at the same time I do want to continue to do updates since so many people just stop the updates after they get home from treatment and I think people should be able to see how people are doing in the future.  So here’s to another year of MS free life!

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1 Year Post-HSCT Blood Work Results

I am planning to write-up my much longer 1 year post-HSCT follow-up post in the next week, although bear with me if it takes longer than that to accomplish.  All sorts of things have been happening this past week around here and this next week will most likely be just as crazy, especially at work with this being Memorial Day Weekend here in the US.  Memorial Day is another baffling holiday really.  It’s meant to honor those who were killed defending this country, and what do people do, celebrate by having a giant BBQ and many go camping.  Seems twisted, but people don’t care about the reason for the holiday, they just like a 3 day weekend from work and school…  Seems fitting given the state of society right now.

But onto my blood work. So I had originally planned to do this closer to May 11th, my actual stem cell birthday, but again life got in the way.  I kept planning to try to get it done before work and then I never managed to get there in time to have it done and then last week I was on my period and that really messes with my platelet counts, so I wanted to wait until several days after that to actually have it done.  Which put me to Wednesday May 24th.  I headed into work a bit early that day to hit the hospital to have the blood draw, prior to them closing for lunch.  I normally go to another hospital clinic to have the blood draw done, but the hospital itself was more convenient this time, so went there instead.  Normally there are lines and you wait forever there, but amazingly I got in right away, their updated computer system makes the check-in process much easier.  Then I got called back right away.  Lady managed to hit my vein first time, drew 3 tubes of blood and then I was on my way.  Literally from leaving my car to head inside to leaving the parking lot was around 5 minutes, crazy fast.  Can’t complain.  And even more shocking, for once they did not use the godawful sticky tape that rips off all my arm hair, I actually had the stretchy stuff!!!!  No pain on removal, can’t complain.

So even more amazing was the fact that my results literally posted in under 4 hours, I was reading over them when I was on lunch.  My doctor felt my numbers were all pretty good, minus my lower white blood cell count still.  So I probably will follow-up with more blood work in another 3 months if he feels it is necessary.  So just for the hell of it, a couple of pics from that experience.

But down to the numbers.  So as I’ve said every time I’ve posted numbers, they vary a lot person to person, and they will fluctuate a lot over the first 2 years you are home.  While some counts look amazing one blood draw, the next they may be horrible, it’s a vicious cycle as your body recovers from the hell you put it through.  So my numbers are similar to other veterans and different from others.  So this time around I did a full thyroid panel, which isn’t required, but thyroid issues run rampant in those with autoimmune disease, you have 1 autoimmune disease, your odds of having others is very high, many people have 2, 3 or even 4 different diseases.  Even though HSCT will wipe out the MS or whatever disease you may have, still doesn’t mean you won’t get others.  But in general chemo also fucks with your body and messes with everything and often messes with the thyroid gland.  It’s fairly common for those who had HSCT to end up with thyroid issues afterwards, for some it’s temporary while the body recovers, for others it is lifelong.  Many people say in recovery if you somewhat crash and feel like shit with tons of old symptoms popping up, to get a complete thyroid panel, because often low or high numbers are actually causing that to happen, and with medication it makes you feel normal again. My numbers for that are all in the normal range, my TSH level itself has always been on the lower end of normal, and this time it was a bit lower than it was pre-MS and at my 3 month post-HSCT.  So nothing to be concerned about at the moment, but it is something I will probably have checked again sometime in the future, especially if I ever felt any signs of it being out of whack.

I also had a metabolic panel done, which basically tests for a lot of the components of the blood.  All of that was in the normal range again, so in the future I probably will not have that test done anymore

Now for the important numbers which are obtained doing a CBC (complete blood count).  I will compare to the last blood work, 2-3 months ago, and discuss in more details after.

WBC: 3.45 (3.8-11.0 is normal range)

RBC: 4.35 (3.5-5.5 is normal range)

Hemoglobin: 13.7 (11.2-15.7 is normal range)

Platelets: 163 (150-420 is normal range)

Neutrophils: 2.37 (1.9-8.0 is normal range)

Lymphocytes: 0.78 (1.4-4.8 is normal range)

So compared to my last blood work 2-3 months ago my WBC counts did drop slightly, they were 3.5 last time, they are 3.45 now.  RBC was 4.35 this time and 4.25 last time, so up slightly. Hemoglobin is 13.7 this time and 13.1 last time, so up slightly as well.  Then my platelets now are back in normal range at 163, they were 142 last time.  Neutrophils are actually up this time at 2.37 compared to 2.21 last time.  And then finally lymphocytes are down slightly at 0.78 compared to 0.81 last time.

So what’s that mean?  Normal recovery with its fluctuating numbers!  So my platelets are still on the lower end of normal, but I have mentioned in the past that my platelet counts have always been on the lower end of normal, even pre-MS.  I have always bruised easily throughout life.  But this time at least they are back in the normal range. Neutrophils are up a bit this time around which is a good thing, those are the numbers you really have to watch, as it is important to stay above 1.9, as below that you are neutropenic, which is not good, means you need to take a lot more precautions.  As you can see my WBC counts dropped a bit and are below normal.  This is common during recovery and not really a big deal, but it is something that I probably will monitor a bit more over the next year, just to ensure they do rise up to normal levels eventually.  WBC counts are another number that pre-MS I have always been on the low-end of the normal range.  Lymphocyte counts also dropped slightly, and while not considered in the normal range for my testing lab, they are in the normal range for other labs, so I consider that to be back in the normal range.  Now I didn’t post percentages of the different blood components, but everything including lymphocytes are in the normal percentages, so that is at least a good thing.

So all in all, things are about where they should be.  I will probably at least have a CBC done in another 3 months to monitor my WBC, even though I really hate blood draws.  When I do my much longer 1 year write-up I will do my big chart again which compared all my blood work from pre-MS, through treatment and then through recovery.

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The Darkness After HSCT: Depression and Anxiety

I’m not going to lie this is not a topic that I actually planned to write a blog post on, but a friend of mine in the HSCT world has realized that these issues are the dark side of HSCT and mentioned to me that these are things that ARE NOT TALKED ABOUT AT ALL IN REGULAR HSCT GROUPS and are rarely discussed in much detail on HSCT Veteran Groups either.  This person wondered why that is when so many HSCT veterans battle this in silence and mentioned that somebody needs to discuss this publicly so that everyone can learn about this prior to HSCT and for those that have completed the process to realize they are not alone if these issues are happening to them.  And I know exactly why this is rarely discussed on regular HSCT groups, flat-out it is because all of the groups are heavily censored and posts that discuss the bad things that can happen after you receive HSCT are often deleted and the poster is banned from the group.  There are huge numbers of HSCT veterans that have been deleted from most regular HSCT groups and many have also been banned from the veteran’s groups as well.  It’s sad, but not surprising.  But it also really sucks for those looking to undergo HSCT because they do not get the truth and they are often lied to about what to expect after HSCT.

So to start out, life after HSCT can really suck, massively. The first few months after you return home can be complete and utter hell.  You have undergone chemo which is essentially toxic chemicals being pumped into your body and boy can that do a number on your mind and body. With HSCT you receive large amounts of chemo, I mean it wipes out your entire immune system, so it’s potent stuff, so of course that leads to consequences later on.  In some regards I do think the chemo does affect those with MS or those with brain lesions worse than those who do not have brain lesions, because the chemo can cause more damage to the already damaged areas in the brain which can lead to more disability for a while afterwards.

Most people have heard the term chemo brain.  If you look at any cancer or chemo related website or blog you will see the term.  What exactly does that mean?  Well it is different for everyone.  For some it causes cognitive issues, known as cog fog in the MS world. For others it causes emotional issues where people cannot control their emotions at all.  Perhaps they will have horrible mood swings, violent tempers, crying outbursts and just be an emotional wreck. It can cause vertigo, balance issues, vision issues and for quite a few people they do not feel that they are safe to drive for months afterwards.  Everyone is different.

Chemo also causes problems with the rest of the body as well.  It can cause joint pain, muscle pain, bladder issues, kidney/liver/other organ issues, and basically can cause all sorts of things to happen or go wrong until the chemo is fully worked out of the body.  How long does that take?  Well that is up for debate, but the common consensus by doctors is most of the chemo is out of your body around 6 months later, but residual chemo can hang around for a couple of years.  But the damage caused by the chemo can last for weeks, months, years or be lifelong.  Basically it can change you mentally and emotionally for life, it is a risk you take when you undergo HSCT.

But back to the topic at hand: depression and anxiety. Will it happen to you when you undergo HSCT???  Yes, most likely it will, but the severity of it really varies so much across the board.  One thing that I did learn from the HSCT Veteran’s Groups before I was booted from them was that many people battle depression prior to undergoing HSCT.  Which is completely understandable.  MS and other autoimmune diseases suck and it’s hard for anyone who doesn’t have one to understand what you are going through.  Many people have lost tons of friends over their diagnosis, marriages/relationships have ended and you also lose the ability to do many things you did prior to being diagnosed.  Many people are isolated and feel alone, this leads to depression.  And I do fully realize that anyone can battle depression, often times it is the most cheerful and happy people out there that secretly are battling depression, you just would never know it because they put on a fake happy persona when they are in public and around others.  I personally have known several people who committed suicide who were battling depression, nobody had any idea how bad it was for them until they decided to end their lives.  I have friends that battle depression now, it’s a tough thing to deal with, and sadly it’s something that is massively overlooked in society and nobody wants to deal with it.  I’ve seen friends that battle depression comment about how people constantly tell them to just suck it up and get over it, but there is more to it than that, it is not that easy.

So why do so many HSCT veterans battle this issue after they return home.  Well it can be a number of reasons why.  As I said above many people battled this issue prior to undergoing HSCT and then after undergoing chemo and the whole procedure they end up dealing with it even worse. Honestly I think perhaps people should have to undergo a mental/psychological evaluation prior to receiving HSCT to ensure that they are mentally able to handle the procedure itself and the recovery process.  I have seen several people proceed to have HSCT that discussed prior how they felt hopeless and should just end their lives, a couple of people were cutters prior to going, those people battled severe depression after returning home and pondered suicide.  One dropped off facebook completely after receiving treatment and nobody has heard from them since.

But one major thing that really causes depression and anxiety after returning home is the fact that you cannot come home and go back to living a regular life right away.  You have lost muscle mass, you are weak, you are tired, you may have sleep issues due to the residual steroids, you cannot go out in public without taking precautions, you can’t eat certain foods, you have to be super careful about germs and you just aren’t yourself.  It also doesn’t help when friends and family assume that you are back to be a normal healthy person and then they constantly ask if you are cured and often times are baffled when you explain that it’s not a cure, it is just something that halts progression. But the fact is for most people you just will not be your old self right away, typically you don’t start feeling more pre-HSCT normal until about 3-4 months post-HSCT.  Then around the 6 month mark is when you really feel more like you did prior to treatment.  But for some people it takes them a full 1-2 years to feel like they did prior to HSCT.  And that sucks, especially for those that had a lower EDSS score prior to treatment, you cannot really live your old life until you get to a certain point after treatment.  No matter how much you push yourself if your body isn’t ready, you can’t rush it.

Then there is always the question you have in your mind, did the treatment work?  Any old symptom that pops up makes you wonder, is my MS or other AI condition back?  And the first few months home, all sorts of old symptoms pop up, many you may not remember, another reason to make a list of every symptom you ever had prior to having HSCT so you can see what all you dealt with in the past. That can really bring you down and cause horribly anxiety as well as depression. Then you also see patients who have these so-called amazing recoveries where they went from being in a wheelchair to running within the first month or two.  While some of these stories are real, many are fake.  Many people have made up fake online personalities with amazing stories to promote HSCT, many make money off their youtube channels or websites and love the attention. But you also have the people who flat-out lie on facebook groups and talk about how easy their HSCT was, how they had zero side-effects, how everyone should do it right away, how it cured them and they have no residual MS symptoms at all anymore.  These are the same people you can be facebook friends with and see their struggles with the treatment and recovery and what they actually are going through is nothing like the happy amazing stories they post about on groups.  It is very misleading.    And I’m not saying that is always the case, there are some people who have had amazing recoveries, treatment was easy for them, recovery was a breeze, and they are back to going things they did before they ever got diagnosed with MS, it’s all very individual.  But it goes to show that you cannot believe everything you read online.  But all of this does make the new HSCT veterans feel depressed if they are not seeing these amazing transformations. They question if the treatment worked and if things are normal because they feel like complete and utter shit and have no desire to exercise and really just want to curl up in bed and sleep for a month. Typically those with higher EDSS scores don’t see a ton of improvement after HSCT like those with lower scores do and I think many expect to not just halt progression, but also plan to see a lot of improvement.  Any improvement is an added bonus and not guaranteed, but a lot of people have seen the amazing stories and assume that will happen for them, and unfortunately that is just not the case most of the time and when they get home and don’t see much in the way of improvements they get depressed and feel the treatment didn’t work.

Also HSCT has led to the demise of many marriages and relationships.  Most likely the HSCT itself was not the cause of this, but it probably was the breaking point in many relationships.  For some it is because the spouse/significant other of the patient feels that the person undergoing HSCT is now cured and will be back to normal in no time, and just doesn’t want to deal with the whole recovery period and everything that goes along with it.  For others it is the patient themselves that ended the relationship, after they have recovered a bit they now feel great and decide to move on from their relationships.  Then of course you have stories of the spouse that stayed at home during the patient’s treatment that cheated and then promptly ended the marriage.  I think it is probably a good thing to evaluate your marriage or relationship prior to undergoing HSCT and determine if it will be able to weather the storm of it all, because the end of relationships/marriages has caused serious depression in some patients and led them to just not care about their recovery.  And this scenario happens way more often than people post about in the groups.  A friend of mine who underwent treatment last year overlapped treatment with 8 other patients that they became friends with, most were in relationships of some sort prior to HSCT, at the 6 month post HSCT mark, 4 of those relationships ended.  It happens and it’s real and it’s not something anyone wants to deal with during the recovery period, because that causes a lot of fucking stress, which we all know stress is not a good thing with any AI disease.

The problem with depression and anxiety after HSCT is the fact that people do not want to talk about it at all.  It is basically a taboo topic.  The first few months people are home are the worst and many people cannot handle it on their own.  For those people who really struggle with it, medication may be needed, and while many people look at taking medication as being a failure, if you need it to keep your sanity, by all means take it. See a therapist if needed, reach out to friends, reach out to other HSCT veterans that have been there and done that before.  Just don’t be afraid to talk about, because you are not alone.

Pretty much everyone planning to undergo HSCT says this will not happen to them, most will say they are not the type of person that will have this happen to them, but the whole experience and especially the chemo can totally change you. I know in my group when we were getting ready to leave Russia, we were like almost everyone else who has left treatment, we were all so optimistic of the future, leaving there free of our MS and ready to take on the world.  A bit weak from treatment, but ready to get on with life.  But then you get home and reality sets in.  You realize you are weak and can’t do a lot of things that you want to do, and then around 4-6 weeks later the steroids really wear off and then you just crash, and then the side-effects of the chemo become apparent. And the chemo fucks with your brain big time, everyone will admit that.  But then when old symptoms pop up and hang around for several weeks and you feel like absolute shit, you really question if the treatment worked, was the hell you are going through really worth it, and all that fun stuff, it really can make you super anxious or depressed.  It can get crazy.  Then any sign of feeling sick makes you incredibly paranoid and you wonder if your new immune system can handle it, will you need antibiotics or need to be hospitalized. Then for some people they really don’t want to socialize with others during this time, they prefer to be alone at home and then become somewhat isolated, which can lead to depression as well. Some people really get hit hard with depression and others have no issues at all, but it is very common and something that should not be overlooked.  I personally didn’t battle depression after returning home, but at times my anxiety was a bit high.  For me it went away on its own, but for a while it was crazy, as I have never battled anxiety at all pre-MS.  MS itself gave me some anxiety, but the recovery time really messed with me.

So for those planning to undergo HSCT in the future, this is not a post to try to scare you.  But this is a topic that is not discussed much at all and it should be.  Recovery is hard.  My first year after HSCT hasn’t been all too bad compared to other patients, recovery is so very different for everyone.  But be prepared for this and make sure you have someone there for you that you can vent to if needed and that will support you regardless of what happens.  And honestly if things get too bad, seek some type of help, whether it is seeing a therapist or medication.  Medication for depression and anxiety have been literal lifesavers for some people, if you need meds, take them.  These things are not worth messing around with. But recovery is hard, it is far harder than the actual treatment, so don’t make it harder on yourself, reach out for help if you need it.

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11 Month Update (Day 335)- Life & The Risks of HSCT

I’m starting out this blog post on a sad note.  Most in the HSCT community, especially in the Russia group, know that a wonderful woman undergoing HSCT treatment passed away in Russia this past month.  Everyone undergoing HSCT knows the risks involved, there is a risk of death, odds are around 1 in 250 now, less risk of death than on certain DMDs. We all agree to take this risk and do so willingly, but nobody expects to be the one that passes away from treatment.  The biggest risk of death with HSCT is infection during isolation, no immune system makes you super prone to catching anything, and basically anything can kill you at that point in time.  I have heard there have been deaths in India recently tied to infections, but the lady who passed in Russia did not pass from an infection picked up in isolation, it was something that I don’t think many people considered could happen. From what people have posted it appears she had a severe reaction to the chemo drug that subsided a bit and then got really bad once she received her stem cells back and then even with a lot of hospital care, she passed away from that reaction. I don’t know all the specific details, I’m just going on what has been posted, but it is completely tragic.  I personally did not know this lady, I was not friends with her on facebook, although I am friends with her stemmie sister so I was watching their journey through my friend.  But this lady followed my HSCT journey as well as that of my stemmie sisters who had facebook pages dedicated to their journeys, we were the first group that was really super active about posting about the whole HSCT experience so we had a lot of people following us. Even though many of us did not know this wonderful lady personally, her death has really affected all of us Russia HSCT veterans.  It is hard to describe to someone who hasn’t been through the treatment, but it really puts life into perspective.  It makes you appreciate life and realize that many things could have gone wrong but didn’t.  It’s really an odd set of emotions to feel, one of my stemmie sisters expressed the same feelings as I did.  It’s just hard to describe and very emotional.  Even harder seeing pictures of the lady pre-treatment and during treatment looking so happy only to having it end that way. While the risk of death is not super high, it can unfortunately happen and has happened at every facility out there, either during treatment or after someone has returned home.  But I am keeping the lady who passed away in my thoughts and sending her family and friends lots of love and good vibes.  She was a fighter to the end.  Please keep her friends and family in your thoughts or prayers.

After this situation rocked the HSCT world this past month it really seems odd to continue on writing a blog post talking about my life after HSCT and how I am doing, when others are suffering so much at this time.  But I did promise to write on a monthly increment so here goes.

How am I doing at the 11 month mark?  So far so good.  So in my last update we all found out that I am working again.  My job isn’t the easiest but I do enjoy it, well as much as one can enjoy a job I suppose.  Unlike a lot of healthy people who work, I at least enjoy the fact that I am able to work again and appreciate all the things I can do.  Hey it’s the simple things in life right? But I’ve been working over a month now and so far things are going well.  It appears that my average step count is around 20,000 each day while at work, which for me is around 8-8.5 miles a day.  Some slow days at work I end up walking around 7.5 miles, busy days can be up to 10 miles. I do feel all the walking and lifting at work are helping with my recovery.  I tend to feel much better overall, thinking much clearer, overall feeling better, and I have been sleeping much better as well.  So all in all can’t complain too much about all that.

One facebook friend of mine asked how my menopausal/peri-menopausal symptoms were coming along.  They are still there, but not nearly as extreme as they were prior.  A few days prior to my period each month I get some hot flashes but mainly chills where I just feel cold all the time and I sleep horribly at that time.  Same right around when I ovulate.  All the whole PMS time brings about old MS symptoms, although that is something that seems really common with those with MS, the hormone shifts at certain times of the month bring back old symptoms.  Damn existing damage never goes away. At least I know that it will go away after a few days.  Unpleasant but something I can live with.

Overall though this past month, I’ve felt really good and can’t complain at all.  It seems like where I am now is probably where I am going to stay as for improvements, although you never do really know.  Biggest issue that really still sticks around and that does annoy me quite a bit, is that if someone talks to me and asks me a complex question, it does tend to take me a couple of seconds to process it and come up with an answer, as opposed to pre-MS when I could just start talking right away. Will that improve in the future? Hard to say, but it’s obviously caused by a brain lesion, and while some damage will repair itself, you never know if it will happen or not.  But otherwise I am doing good and just trying to enjoy life.

Since I started working I actually have worked more 40 hour weeks then I expected to, which does really limit my free time and other activities that I like to do.  But since it’s spring and the weather is somewhat cooperative at the moment, I have been trying to get stuff done in my yard.  I’ve worked on some small landscaping projects, still working on the biggest one right now.  As well as starting seeds for my garden and all that good stuff. Then of course most of my free time is spent with my family just hanging out and spending time with my kids.  Time with the kids is by far the most important thing of all.  We’ve done some walking around on local trails as well.  Here’s some random pics from my last month, some from our walks, others from my landscaping/planting I’ve been doing.

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And as per my usual blog post, how I am doing with my diet, exercise, meditation and yoga?  Well considering my schedule now, I’m not doing all too bad.  Yoga isn’t really happening.  I just can’t get it done in the morning because the kids are up and trying to do yoga with a toddler crawling all over you really isn’t the most practical thing.  I do try to do some meditation each night before bed.  Exercise mainly happens at work, I walk around 8 miles each day I work and I do lift a lot of heavy things, so I am getting my work-out in that way.  On my days off I work around the yard and try to keep up my activity level and I will say I do think that has made me feel much better.  The most exercise I get, the more alert I feel and I sleep much better too.  As for diet, the diet always gets me….  But I have been eating much healthier this past month than I have prior to that.  I tend to work afternoons/evenings, so I often make food in the crock-pot for the family that they can eat, then I also will have left-overs to take to work the next day. I’ve been managing to incorporate a green smoothie into my diet most days before work and also do try to eat some greens with my actual lunch at work.  So progress. I am focusing more on diet this next month.

Other than that my month has been pretty boring, just living life like everyone else.  My hair has grown a bit more, but still really is a curly mess.  It is straightening more as it grows out from the head, hard to say on length of it at the moment, there are sections that are over 5″ long and others places where it is still around 4″ long, some even is around 6″ long, so hard to get an accurate measurement, especially when it is so curly. But here are some pictures of the hair.

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Next month will be the 1 year mark!  I will do a much longer blog post that goes into more details on MS symptoms and everything else, similar to what I did at the 6 month mark. Onwards and upwards!

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10 Month Update (Day 304)-Employment & Life

This post is a couple of weeks overdue but my life has been so incredibly crazy lately that I just have not had time to sit down and type up a blog.  As I mentioned on my facebook page for this blog back when I did my 10 month update I am in the process of writing up another blog post that goes more in-depth with particular side effects as well.  It’s mostly finished I just need to add some final input that I received from a friend.

But back to the 10 month update on me.  So how am I doing and what am I up to?  Well overall I am doing great, no complaints from me.  I decided to go back into the workforce and get a job. The extra money is nice, but benefits are nicer, especially with everything going on in this country right now.  So much is up in the air nobody has any idea how the cards will fall in the end with all that, but for certain things like health insurance, it certainly isn’t looking promising at all if you have any listed medical condition in your health records.

I’ve been asked on my personal facebook page, by friends who have undergone or plan to undergo HSCT, how I’ve handled going back to work, how to deal with the stress, how to deal with the long hours and basically how I’ve dealt with absolutely everything that pertains to going back to work.  I do not plan to discuss on here where I work or exactly what I do, but my job is not exactly the easiest and probably not what you would expect for a person with MS or that has undergone HSCT less than a year ago.  But I do work in a place that requires a lot of stamina to survive work on a daily basis. I do track my steps and miles walked every day when at work and I walk between 7-8 miles a day at work, busy days are closer to 9, slower days are closer to 7, but the trend since starting work is always 7-8 miles of walking a day. Which for me averages to be over 20,000 steps a day.  On top of that the job involves a lot of bending, twisting, and lifting and moving heavy items.  Lifting boxes that weigh between 45-80 pounds is common, most days I lift and move a minimum of 1500-2000 pounds of boxes, some days are over 5000 pounds. I’ve gotten questioned by some MS people asking if I am crazy for going back to work like that.  But I actually have always enjoyed more strenuous work and if I am working a job, I need a job where I keep busy and am active non-stop the entire time.  I cannot do office work or anything like that, it is just not who I am.

Now how am I holding up through all this?  Well I’ve been at work for a couple of weeks now and I work between 24-40 hours a week just depending on the week and how busy things are.  I will admit I was a bit concerned at the start at how I would do with the schedule as I have not worked a job like that in quite a while, so the first day I was pretty exhausted when I got home from work.  But after that I have been doing great.  I do tend to work the closing shift and working until 9:00pm, something that I would have never been able to do pre-HSCT.  I would have been dead tired at that time and there is no way in hell I could have ever worked an 8 hour shift doing any of this type of work, managing to stay awake and functioning until 10:00pm would have been brutal and damn near impossible at times. Since starting work my sleep has massively improved and overall I feel much better.  I feel better cognitively and physically.  I have always believed that exercise really can make you feel better in every way and it appears that my job has really helped with all of that.  Has the job brought back any old MS symptoms?  Well on days when I do a lot of heavy lifting my abdomen area will get a bit of numbness back which I know is caused by previous damage so it doesn’t concern me at all, old damage often does not go away and will always stick around.  But other than that work hasn’t brought back any old symptoms.  So all in all, work seems to be benefiting more than anything else.  But I will keep you all up to date on that.

In general how am I doing at this point in time?  As I said above I am doing pretty good. We finally managed to get past winter and into spring, but that has its pros and cons.  The seasonal weather change in my area is always intense.  We go from super cold to super hot, then it fluctuates so much on a daily basis for a couple of months straight.  Then it’s dry and hot some days, to super humid and rain the next day, which just is hard on a body in general.  So when there are crazy weather fluctuations and rain it does make my lower legs stiffen up a bit, just like that did in the fall and winter.  Something it appears I will always be stuck with, but I’m okay with that. And then with spring comes allergies….  I’m not allergic to a whole lot of things, but it just happens that where I live contains most of the things I am allergic too. But right now trees are all in pollen and that makes for  a runny nose and lots of sneezing. I’m allergic to elm tree pollen and we have numerous elm trees on the property which certainly doesn’t help with that.  Then elm trees are super prevalent everywhere in the area, so I just can’t get away from that anywhere. But I have several other allergies to other plants and trees, so we will see how that goes as the various pollen seasons come along.

As for improvements, we are pretty much at a stand-still for that.  Seems like where I am at is where I am staying.  Perhaps in the future there will be more, but improvements in general are just a bonus, so I am happy with where I am at in that.

As for my life outside work I’ve just been super busy around my property working on stuff.  I couldn’t do much in the way out gardening or outside work last year because my immune system was still compromised, so I am making up for it this year.  I’ve been doing various clean up projects around the property and am getting ready to rebuild my herb beds and then work on some landscaping projects I’ve been wanting to do, in between the snow. Yes we did get another massive dump of snow for this area, another foot of it.  Some pictures below this paragraph. Keeping busy has really helped immensely with my recovery.  Then of course I spend a lot of time with my kids, now that I’m working I do see them much less than before.

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So at the 10 month mark HSCT has really changed my life.  I am now able to do things that I wasn’t able to do pre-HSCT.  I can now do things I could do prior to my MS diagnoses.  I can now actually work a strenuous 8 hour a day job and still have energy afterwards.  I can stay up later at night and not be super exhausted.  I can do so much that I wasn’t able to do before and it is amazing. It’s truly one of those things you never expected to be able to do again.  I do realize that HSCT can fail in the future, but you have to be optimistic that it won’t happen to you, and you have to enjoy every day of life and not take one day for granted.  Every day when I go to work I just think it’s so amazing that I can do this, most people would not feel that way about going to work… I don’t take anything for granted.

So how is my lifestyle changes coming along?  Hahaha.  This has totally been my nemesis since being home.  Like so many people I had all these big plans on how I’d change my lifestyle and for the most part I’ve failed miserably. As for healthy eating and diet…. Well I’ve made progress.  I am really trying to eat much more healthy and I do try to eat a minimum of 1 1/2 cups of greens a day, I typically do that in a green smoothie concoction before work every day.  My goal is around 3 cups of greens a day and I do occasionally get that in with a salad that I take to work.  Then I do try to follow a more paleo diet as grains and gluten really seem to cause my body inflammation.  So overtime I’m getting better and better with my eating.  I am hoping to completely ditch the gluten by the 11 month mark as I really do feel much better not eating it.

So now let’s discuss the always fun topic of hair.  So yes my hair is still growing in with a vengeance.  It’s between 4-5 inches long depending on where you measure.  Hair does not all grow at the same speed in appears.  So in the past month all the new hair growth, about an inch, has really straightened out.  Which when brushed you can really tell, but then if you move your head around or go outside in the wind, you are back to the giant mess of curly hair again. So perhaps in another couple of months it will be tame enough to actually look somewhat presentable.  Some 10 month hair pictures:

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So all in all it was quite the month.  Many things I have started doing this month I would not have been able to do pre-HSCT.  MS would not have allowed it.  I would not have had the energy to get through the day.  Next month I will try to be more on time with my 11 month blog post, this past month has been an adjustment period for me.  But so far so good, no complaints here.

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9/10 Month Blood Work

In my last post, my 9 month update, I mentioned that I would be going to get my blood work done eventually.  I had hoped to do it closer to the 9 month mark, but the upper respiratory virus/cold I had really kicked my ass.  I was trying to hold off on doing blood work until after I fully recovered from that because I knew it would knock my WBC counts down quite a bit, but finally I’m about over it.  It takes a healthy person about 2-4 weeks to get over this particular virus going around, so considering my immune system doesn’t have exposure to things like that it is taking a bit longer to recover. So my blood work was still done when I was on the end part of this whole virus and my numbers do show that.  I also happened to be on the heaviest part of my period when doing the blood work and for some reason my platelet counts always drop when I’m on my period.  But I finally managed to have time in my crazy life to get the blood work done last Friday and I got the results this Monday.  So anyways, here they are.  Not where they really need to be, but the important numbers are still in the safe zone and I’m going to do more blood work at the 12 month mark as well to check and see how things look and to see if my counts rebounded.  I’ll discuss my current numbers and then how they compare to my 6 month numbers.

WBC/Leukocytes: 3.50 (3.8-11.0 normal range)

RBC: 4.25 (3.5-5.5 normal range)

Hemoglobin: 13.1 (11.2-15.7 normal range)

Platelets: 142 (150-420 normal range)

Neutrophils: 2.21 (1.9-8.0 normal range)

Lymphocytes: 0.81 (1.4-4.8 normal range)

So as you can see my WBC and Platelets are slightly lower than they should be.  But my neutrophils are still in the normal range. My lymphocytes are higher than at the 6 month mark and a lot of labs say 0.70 is the low-end of the range for that, I believe my highest reading ever even pre-HSCT and pre-MS was 1.10, so I’m happy with the improvement with that.  For some people it can take up to 2 years for the numbers to really stabilize and things like being sick really mess with that.  And I have been trying to keep my platelet numbers on the lower end of the scale, so it’s no surprise they dropped below the normal levels when I was on my period.   But as I’ve said in numerous posts prior, these numbers vary so much patient to patient in the recovery period, some people rebound right away, others take 2 or more years, and then your numbers actually fluctuate a fair bit on a daily to weekly basis. So this post is really just so people can see what my numbers are.  My numbers are a bit low, my Aussie stemmie sis did blood work similar time as me and her numbers are all amazing.  I’ll just be happy when spring and summer gets here and everyone stops being sick all the time, would really help the immune system.

But for comparison, here is my 6 month numbers:

WBC/Leukocytes: 5.21

RBC: 4.43

Hemoglobin: 14.0

Platelets: 195

Neutrophils: 3.98

Lymphocytes: 0.65

But if you remember my 6 month post where I compared my numbers throughout the journey you’ve seen how sporadic in general numbers can be in a month.

I also had a metabolic panel done as well and everything was in the normal range for that one.

But I also opted to do a Vitamin D test this time around, just because we are finishing up winter and I was curious as to what my numbers actually were.  I had it tested on July 21, 2016 and it was 62 ng/ml.  Not bad considering the normal range is 30-80.  But I personally wanted to be on the high-end of the normal range or above it.  This time my number was 88.9 ng/ml, so above the high end of the normal range.  Overall I am shooting to keep it between 80-150, so not bad, considering there has been basically no sun all winter long and I’ve been supplementing 10,000iu a day most days all winter long.

So considering, not too bad, after battling the nasty sickness for several weeks.  I’ll be posting my 10 month update in about a week, have some slightly exciting news to report in that blog post.

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9 Month Update (Day +280)- Sickness, Stress & Recovery

It’s been 9 months now since I got my stem cells back and rebooted my immune system.  In  a way it seems like just yesterday, but at the same time it also feels like it never happened.  Hard to describe really, but those who have been there and done that know what I mean. I think everyone who I was treated with as well as those treated before and after me have all moved on with their lives and we’ve put MS and the whole HSCT treatment behind us.  It’s something we will always remember, but then again we just want to move on with life and forget about all that.  But all that being said, let’s get down to business.

So I really have pondered how to write this blog post, in a way I feel guilty and don’t want to write a blog post saying how well I am doing when others that have undergone HSCT are really struggling.  In a way I feel like it’s rubbing salt in a wound when I can say I’m doing pretty freaking good when I know others are not.  It’s a real dilemma for me, but I have always said I’d be truthful about everything so here I am writing my update. I say this because a friend of mine who was treated about 6 weeks after me in Russia had more struggles with her recovery and she received a lot of IV steroids in her life, which we all know that IV steroids are helpful but also have risks that go along with them, like AVN.  My friend, who does have a facebook page documenting her journey, has also been honest about her struggles with MS and recovery, and recently did discuss how she was diagnosed with AVN in both hips and perhaps in other joints as well.  She will be undergoing surgery on her hips in the future, but because she’s only about 8 months out, it’s a bit early for surgery.  AVN is super painful and it has been a huge setback for her, but she just has the most incredibly spirit and is so positive about the future.  I do have to say I am not sure I could be as optimistic as her through it all.  But at the same time in watching her struggle with this, it really makes you question life in general.  How can such a wonderful person be stuck with so much pain and suffering in life? Life just isn’t fair. Going into HSCT many people in the past have not known that AVN was a possibility afterwards, it is massively downplayed in the groups, many people say it happens less than 5% of the time and is super rare.  But lately it’s been reported that 5-10% of all people who have ever received IV streroids will develop AVN, in all honesty in what I’ve seen in groups, it appears the numbers is closer to the 10% mark for those undergoing HSCT or perhaps even higher.  There is no real reporting of data for this, so nobody has exact numbers.  But needless to say the risk is there and it is real and it’s something that nobody wants to happen to them and most think it won’t happen to them. But it sucks and it’s so hard seeing those suffer from it, especially those that are so young, nobody in their 20s or 30s expects to need hip surgery.  So please keep my friend in your thoughts and prayers.  She is a fighter and will get through all this, her MS has been halted which is amazing, so hopefully she can get her surgeries and move on with her life, she certainly deserves it.

Now onto me.  This month hasn’t been the greatest for me either, I got a really nasty cold and upper respiratory virus or perhaps a strain of the flu, not really sure.  All I know is in my area of Idaho 4 strains of the flu are going around as well as 1 really nasty cold and upper respiratory virus.  I was doing so good this winter in managing to avoid sick people, but then my oldest kiddo needed to go to urgent care for a UTI and everyone, and I mean absolutely everyone in the waiting room was coughing and looked horrible, so even though we took every precaution, I assumed we’d end up catching whatever was going around, especially since most of the nurses were coughing and so were the receptionists, and I was correct.  2 days later we both started getting sick, then a couple of days later my youngest also got sick.  My youngest managed to kick this sickness after 2 days of a lot of sleep, but me and my oldest battled it for a while, in fact we are still battling this 2 weeks later.  Basically now we are down to the coughing stage of it all, which apparently with this virus you are stuck with a bad cough for several weeks, lucky me.  But this whole virus knocked me on my ass big time.  Went from feeling great to feeling like complete shit. I ended up being super tired, body aches, sore throat, fever, coughing, running nose, headache, and then of course that flared up every old MS symptom possible.  Unfortunately you never get rid of your MS damage so when you are sick or stressed or overly tired those nasty old symptoms flare and then that makes you feel even shittier than you would if you were a normal healthy person that gets sick. So while 2 weeks later I am just stuck with the coughing part of the whole virus, I am still recovering from my MS symptoms, which are gradually going away.  But just to mention some of my old symptoms that flared: hands had a lot more numbness, feet were completely numb, leg weakness, cog fog, balance issues, bladder urgency, and fatigue. Not fun, but I knew it would happen when I got sick.  Unfortunately I’m not the only HSCT veteran that has been sick this winter, several of my friends who were also treated this past year have also gotten the flu or other nasty viruses and we’ve all had the same end result, the flaring of old symptoms that takes a couple of weeks to go away.  So really in the end it gives you a huge reality check on how much MS has really fucked up your body, because even with HSCT you still have the existing damage and until they manage to come up with something to fix the damage you are stuck with it.  But on the plus side it really really really makes you appreciate the good days and then reminds you of how shitty you really could feel at times with active MS.  So seriously if you are a healthy person be very very grateful because that can change very quickly and it sucks.  But at the moment I’m still recovering from that and it will probably take another week or two to get back to how I was before, now I just need to avoid sick people for the rest of the winter because I do not want to go through this again.

So let’s talk stress.  Life is stressful, I mean why lie.  No matter how much you try to take the stress out of life, you just can’t.  Well maybe some people can and if they can I’m very jealous.  But in general there is always something stressful going on in life.  I do really try to keep my life as stress free as possible, but inevitably life happens and stress happens.  Why am I stressed, well many reasons, some personal that I won’t discuss on the blog, but then in general I’m just stressed about life in general in this country.  I’m concerned about my health insurance.  I get my health insurance through the exchange, they want to do away with pre-existing conditions or at least go back to charging asinine amounts of money for those with them, which means I wouldn’t have insurance.  Then I am a wildlife biologist, not working currently, but the current administration is basically destroying every aspect of the environment.  Most wildlife biologists are not tree huggers, most are pro-hunting and want to make sure wildlife populations are managed correctly, but when there is talk of getting rid of the endangered species act, allowing mining/oil exploration in wilderness areas and national parks, allowing former illegal trapping operations to be reinstated, as well as many other things, it is just horrifying from an ecological standpoint.  I am a super outdoorsy person and it’s concerning that my children won’t be able to enjoy the great outdoors like I was able to.  Many other things stress me out as well.  I realize that none of that can be changed at the moment and there is absolutely nothing I can do about it, but still stressful none the less.

Then a topic I touched on a bit on my facebook page: people who steal information and quotes from my actual blog and post them on their personal facebook pages and act like they wrote them themselves. I became aware of this when several of my HSCT facebook friends shared several posts from a supposed HSCT veteran that I believe was treated in India or at least claimed they were treated in India.  I honestly have no idea if this lady actually underwent HSCT or if she is a faker just looking for attention, no clue. I’d say this sort of thing surprises me, but I have seen so many accounts of people having others steal their info and then post it as their own to get likes, shares and attention. I don’t understand why people do this, but obviously they have low self-esteem and boost themselves up by putting on a huge act. But I was reading these posts that were shared numerous times, one post alone was shared off this ladies page literally hundreds of times and I recognized the writing style immediately.  Many of these postings were copied word for word from my blog posts, with the only things being changed is locations, names, and other small details.  This particular lady also was stupid enough to send me an actual friend request on facebook.  I reported her to facebook, but I don’t think it did any good. I guess I can feel honored that my writings have garnered so much attention and I hope they do help others undergoing HSCT, but it still pisses me off to see someone steal my writing and claim it as their own.  It’s why when I posted about this on my facebook page I told people just to make sure that the people they are friends with on facebook are legit and not fake, it’s very easy for people to have fake profiles and lie about anything and everything on facebook for attention.  But I will continue to blog and perhaps this lady will continue to post my older writings as her own, hard to say, but whatever, at least it gets the word out about HSCT and discusses recovery and all that.

This month was pretty boring for me in general though.  I mean I spent the last 2 weeks being sick, but other than that life was pretty boring.  I watched a lot of moves with my kids, and by a lot of movies I mean we watched the Disney Robin Hood movie like 20 times, literally….why I have no idea, but it’s what the sick kiddo wanted to watch, then we switched to Winnie the Pooh movies, think I prefer Robin Hood honestly, can only handle so much Pooh, since he’s such an irritating worthless bear that is addicted to eating honey and really when you analyze those movies you realize they show the worst traits of people and society in general. Yes, I spent far too much time analyzing those movies, but when you watched some of them 10 times in a row, you start doing that. We did have more snow and then we got rain and it melted all the snow which caused tons of flooding locally.  Irrigation canal by my house overflowed and flooded my neighbor’s pasture which in turn flooded the highway.  This time of year the canal is dry, so there was a lot of run-off from fields that caused all this flooding.  Highway was shut down for over a day because of water over the road, one road near where I live completely washed out, it was a mess.  Shoshone Falls, a local waterfall, had a crazy amount of water going over it too, really unusual. This area is really not prepared at all for this sort of thing.  But we’ve gotten way more moisture than normal this winter, it really was ridiculous.  I am hoping spring is finally here, because I’m done with all this crap, but it’s supposed to be a rainy spring….not a fan of the rain. I do look forward to more sunny days so I can go outside more, I do enjoy getting vitamin D from the sun whenever possible.  But here’s a couple of pics from that.

So how am I doing otherwise?  Considering the viral crap I had going on, not bad.  Prior to that I was doing pretty good.  Feeling great and I was doing so good with my healthy eating.  I mean I was eating healthy breakfasts, a good lunch, healthy dinners, and then I got sick.  And when I was sick literally all I could stomach for about a week was soup, and not healthy homemade soup either, but the crappy unhealthy stuff that comes in a can that is full of all sorts of bad stuff. My stomach still is recovering from this virus and I still am not able to eat a whole lot of healthy foods, greens in general are really hard on my stomach, so I’m gradually trying to ease back into the healthy eating, but it’s rough. I lost about 10 pounds through this all, which considering I packed on some weight over Christmas it isn’t a bad thing, but I am about 5 pounds lighter than I actually want to be, so hopefully once I feel 100% again I can eat healthy and put on a bit of weight again.  So my healthy eating for the month was good at the start, bad at the end.  Hopefully this next month it will get better again because I really do feel so much better when I eat healthy.

Now let’s talk yoga, exercise and meditation….Yeah, it basically didn’t happen at all this month, not going to lie about that. I really do try to be motivated with it all, but with young kids and a super busy schedule it just doesn’t happen.  Yes people will still say it is a piss poor excuse and I can make time, which is true I suppose I could, but like I said before I do enjoy spending time with my kids and to me that is more important than exercise.  I realize life is short and can change in an instant and I feel family time is more important than exercise. Once the weather clears up and everything dries out I do plan to be more active outside.  Kicking the soccer ball around with my oldest and just walking more around my property to get in shape are easy things I like to do, it’s just harder to do in the winter especially when everything is a super muddy mess. I do plan to try and do more yoga though, I do feel better when I do it, but finding time in the issue.  It seems like every morning I attempt to get up before the kids and do yoga, they always wake up, and attempting to do yoga during the day when they are up ends up with my youngest climbing all over me which doesn’t help, and then in the evenings I really just don’t care anymore. I however am succeeding a bit more with meditation in the evenings.  I have taken up meditation while laying in bed.  I do some deep breathing exercises and then try to meditate for around 15 minutes.  Still a complete failure with this however, I cannot keep my mind focused, it always wanders, but I do try and focus and I do end up sleeping much better on nights that I do meditate.  This is something that I do plan to work on more all the time.

As for improvements for the month, hard to say really with being sick and all.  But I think where I was last month I seem to be holding steady.  Good days and bad days, a lot for me depends on sleep.  My youngest sometimes has streaks where she is up literally every 2-3 hours all night long for a couple days in a row, other nights she is up once a night, then other nights she sleeps through the night.  So some nights I end up with very little sleep which does affect me the next day, but when she sleeps good I tend to sleep pretty good and feel great.  But such is life.  But overall I am able to stay up later at night and can get up early and then fuction normally thoughout the day and not be tired, so that alone is amazing.  It’s great to not be completely exhausted at 9pm and then want to sleep until 10am and then still be tired throughout the day. You don’t understand how exciting that can be until you can’t do it anymore.

As for side effects, most of those have gone away, the only thing I really seem to be stuck with at the moment is symptoms of perimenopause, which basically is what women go through before they go through actual menopause.  So basically I’m stuck having my periods, but yet still have menopausal symptoms.  Honestly I’d love to go through menopause, not going to lie just because of endometriosis pain that is supposed to lessen or go away with menopause, but I doubt that will happen. The biggest issue I have with this that drives me crazy at times is the fact that I cannot regulate body temperature at times and then I also have chills. So a lot of times I am just downright cold and it is hard to warm up.  It’s not that my body temperature is lower, I just feel cold. Which might not be a bad thing in the summer heat, but in the winter it just plain sucks.  Then I have chills at times when I just cannot warm up, again my body temperature is normal I just feel super cold and cannot warm up.  Usually with the chills this occurs when I ovulate and right before and during my periods. I can always tell when my period will start because I have a horrible time trying to regulate my body temperature and I have such horrible chills at night.  It really is miserable.  But I did know going into this whole HSCT experience that I’d be stuck with menopausal symptoms so it really isn’t a huge deal, but man menopause really does suck.  So many people always give menopausal women so much crap about how they feel thinking they are blowing it way out of proportion, but I gotta say it does really suck.

So what do I have going on in the next month?  Well I am planning to do 9 month blood work, which my doctor did already put in the order for that.  I am waiting until next week to do that because I am waiting to get over this whole virus thing because I know when you are sick it makes your leukocyte counts go crazy and if I am going to undergo being stabbed by a needle, I want accurate blood work to show what my numbers look like when I am feeling healthy. I will be doing a CBC, complete metabolic panel and then a Vitamin D test. The first two tests are the ones I always have done and then the Vitamin D test is just for my own curiosity, because like most people with MS I heavily supplement with Vitamin D and I want to know how my numbers look after the winter. I will probably do a brief blog post on those numbers once I get the result. Then like always I plan to eat healthy, exercise more and meditate more, none of which will probably happen but hey it’s good to at least have goals right?

So as usual I’ll do my monthly hair picture, because comparing hair growth over time is always fun.  My hair is still a crazy curly mess that cannot be contained. I mean I could straighten it or put stuff in it to control it but really I’m too lazy.  I still opt to wear a hat or bandana when in public.  My hair is about 3″ long now and it is starting to calm down a bit and straighten a bit as it gets longer.  But I had somewhat naturally curly hair prior to HSCT, so I believe I will be stuck with somewhat curly hair until it grows out a lot more. Don’t mind my looking tired in the pics, they were taken at 10:30pm after a long day.

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So onwards and upwards.  I will do a blog post when I get the results back from my blood work just in case anyone is curious of what my numbers are looking like.

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8 Month Update (Day +245)- Holidays, Snow & Health Insurance

This post is over a week late, but life has been incredibly hectic lately and I just haven’t had the time to sit down and type up an actual blog post.  But now I have some time, so here goes.  But first off, here’s some pics of my hair, because really that is what matters right?  And yes it is crazy, ridiculously crazy.  This chemo curls shit is just out of control.  Many people, like my stemmie sis from Australia, straighten their hair, but I really don’t have the time or patience to do that, so I just let it go crazy.  I still wear a bandana or hat when in public, because I hate my hair, but it is growing pretty fast, it’s between 2-3 inches long now, so I’m thinking at the 1 year mark it may be slightly more manageable….But here is some pics:

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So the past month in general was crazy, I mean we had Christmas in the mix of things, which means tons of chaos.  Dealing with family on both sides means tons and tons of stress.  I mean you can really try not to stress out, but really how can you not, it’s a stressful time of year.  I think in general that is why so many relapses tend to happen that time of year, so much stress. But this year we ended up hosting both my hubby’s family and my family, on different days of course.  So there was quite a bit of prep work going into all of that.  But on a positive note, there were no screaming matches or other craziness occurring this year, so that is always a plus.  Sometimes things get exciting.  But we are the only ones with kids, so therefore everyone focuses on the kids, so that makes things less dramatic I guess.  But we survived the holidays, so life is good.

So let’s discuss the weather.  I think seasonal changes mess with most everyone with MS, for some it’s the heat of summer, for others it’s the cold of winter, for others it’s both of those extremes. For me in the past, winter has meant incredibly tight lower leg muscles and leg spasticity, which made walking and driving tricky in the winter months. This winter after HSCT it hasn’t been as bad, it is still there from time to time but not to the extremes as it was the prior winter. For me at the moment it seems like changes in pressure are what really causes me issues.  One time last week when I was in town a storm front started moving in and it made my leg muscles tighten up so badly, walking was difficult and I could hardly walk normally.  There is no way in hell that exercising or running would even be possible when that happens.  Luckily the pressure managed to stabilize after a few hours and my legs went back to normal, but for a while it was quite unpleasant. And like always I think extreme temperature changes also cause issues for my legs, not as much in the past, but when temps go from a high of 40F and then within a day having lows of -20F, it’s quite the fluctuation. But compared to the winter before when my leg muscles were super tight and painful all winter long, it hasn’t been that bad this year.  Unfortunately with MS, even after HSCT, if you have existing damage done, it may never go away and you are stuck with it.  But things have massively improved in that regards so I can’t complain. But in general the weather here this winter has just been ridiculous for this area.  I mean I used to live in northern Idaho and they’d get tons more snow, but they at least know how to deal with snow, when southern Idaho really has no clue at all.  They do not have enough plows, and even after several weeks after a major snow storm that dumped 15-20″ of snow they still haven’t plowed many of the streets in Twin Falls. I live near a highway and that is well plowed because it is plowed by the state, the county does a fairly decent job in plowing roads that are not in city limits, but they really are lacking plows here so it takes then several days at times to actually get everything plowed.  In some instances, dairy workers have taken their big machinery and plowed roads in order to allow milk trucks to get to the dairy; when it comes to dairies, the milk trucks have to be able to make it there, no exceptions. But then it comes to the cities around here.  Now the smaller towns tend to do fairly well with plowing considering many plow the streets with pickups with plow blades, but Twin Falls is a disaster.  I have no idea how many plows the city has, but some of the main roads take forever to get plowed and are just plain treacherous at times, no de-icer, no sand, no salt, nothing.  I’m really surprised there haven’t been a ton more accidents because of the lack of plowing.  Thank god that in the US everything has to be bigger and better than elsewhere in the world and most people have 4×4 trucks and SUVs so you can at least drive down roads in those, not necessarily the most practical for daily drivers the rest of the year like people use them for, but at least in bad winter weather they make sense when roads are never plowed….. Then side roads, forget about it, some still haven’t been plowed from the huge snow storm 3 weeks ago, then in the past week there has been freezing rain and about 10″ of new snow, makes roads super difficult to drive on.  If I lived in that town I’d be pissed as hell, they pay a ton of taxes and roads are not plowed.  There really is no excuse, as cities grow, most tend to buy more plows to deal with the expansion of the city, but not in southern Idaho.  Hell Nampa, near Boise, has 4 plows for the city of over 80,000 people.  They’ve had tons more snow than my area and their roads are a nightmare, has led to tons of snow days for schools.   But for me, I often have to get across Twin Falls to get to appointments and the roads are always a nightmare, solid ice and just a mess, like this morning, nothing had been plowed from the snow 2 days ago and that was a main road.  Not impressed with this area when it comes to snow.  Now I won’t lie, I do love snow, it’s pretty and my kids love it, but they really need to maintain roads around here better. I do still miss the snow amounts in northern Idaho though, everything looked beautiful all winter long.  So this winter we’ve had more than double our normal amount of snow and then in between snow storms we have had freezing rain, then some melting, then more snow, then more freezing rain, then more snow, makes things messy. But I’ve had my fill of snow and driving around town in snow, so I’m ready for spring.  Now the cold temps I don’t mind, coldest night was -22F, quite a few nights around -10F, but that’s not a big deal.  But still I’m ready for spring, I love seeing everything leaf out and bloom.  But here’s a couple of pics from all that.

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Now before I get on the oh so popular topic of healthcare in the US, I’ll touch on how I’m doing overall.  Can’t complain I’m doing pretty good.  There are still some bad days mixed in, but overall I’m doing great.  Most days I consider myself to feel like most normal healthy people my age.  Some days I battle some fatigue in the middle of the day.  Some days I battle tight leg muscles and spasticity in my legs.  Cog fog pops up once in a while as well as some numbness around my abdomen, a lot of that I contribute to hormone fluctuations as it happens during certain times every month. But most days I feel pretty freaking good, way better than I did a year ago.  Will I ever be like I was before MS, my guess is no, some days are a struggle, but as of now MS is halted and I’m happy with the improvements I have seen. The biggest improvement I have seen in the past month is with my hands.  Most of the time I have full feeling in my hands and fingers, that was something I wasn’t sure would ever happen again, I had come to terms with the fact that my fingers were numb and probably would stay that way.  A lot of people would say, oh numb fingers that isn’t a big deal, but when you can’t feel your fingers it does make a lot of tasks more difficult, such as buttoning buttons, tying shoe laces, attempting to cut things with a knife and not cutting yourself in the process.  So I am happy about that. Numbness in the feet is still there, I have days where it isn’t very bad at all, other days it’s really bad.  It’s one of the symptoms I’ve had the longest so I doubt it will ever go away completely, but I can handle that, numb feet are way better than numb hands.  But the one thing I have noticed is that every time I manage to crash my feet into something, it is always on a day I tend to have more feeling in them, and then it freaking hurts.

Now when it comes to side-effects from the treatment, in some regards I’ve lucked out and fingers crossed that it stays that way.  I haven’t really had any bone pain, many people have horrible bone pain.  Hot flashes and chills have mainly gone away, that mainly just pops up with hormone changes each month, ovulation and period being the main times for that.   I do still have periods of time each month that I just cannot sleep at night, I had that prior to HSCT so I don’t blame the lack of sleep on the HSCT.  Nothing helps with that, so I just ride it out.  Now one thing that I still have that has gotten worse in the past month has been anxiety, but I don’t really blame HSCT for that, I blame the whole election mess in the US for that, it’s not a good time to be a person with a disability in the US, I think many people, even people who have not undergone HSCT are battling anxiety dealing with this whole mess.

Now onto a very hot topic in the US, healthcare and health insurance.  I have gotten into many debates with people about this in the past couple months, it’s a hot topic that nobody tends to agree on.  But having MS and having undergone HSCT makes me have pre-existing conditions.  Even if the MS is halted I will always have that listed on my records and will make me have a pre-existing condition. Right now I do have insurance via the ACA, aka Obamacare.  Most employers do not offer insurance in my area, there are many loopholes employers can use to get out of offering insurance and most use them  But as pretty much everyone in the world knows, they repealed the ACA, they have yet to get rid of it completely and are trying to come up with a plan that supposedly would cover everyone at a cheaper cost, I really doubt that is feasible at all unless they go single-payer. So for now I have health insurance but for how long I don’t know. They keep saying pre-existing conditions will not eliminate you for getting insurance but they also voted to get rid of that recently while voting on something else related to that whole mess, so it’s hard to say, I mean you can’t really trust politicians all too much, they all tend to flip-flop non-stop and that goes for all political parties, none are exempt.  I think everyone can agree on the fact that insurance costs way too freaking much.  We pay close to $900 a month for insurance, there aren’t many options in my area so we are stuck with what we got.  I don’t blame the ACA for these high prices, as I had private insurance prior to the ACA and it was going up on average $100 a month each year, so it was pushing over $400 prior to the ACA, which right now it’s $440 a person, so considering what I pay now, things haven’t changed much. But the problem is insurance companies charge way too much, big pharmaceutical companies charge way too much, hospitals and doctors charge way too much, and nobody does anything about it.  To me the best solution is single payer, aka socialized medicine, like all other countries in the world tend to have, as that actually eliminates the greedy insurance companies completely, allows the government to cap drug prices, and caps what places can charge for stuff.  But that will never happen in this country, so now we wait to see what happens.  So it’s caused me a lot of anxiety.  Other political topics also haven’t helped with my anxiety levels.  I think everyone hopes for the best with our president and congress, but things are moving at such a crazy fast speed, it’s hard to know what the end results actually will be.  I’m just hoping to be able to have somewhat affordable healthcare in the end.

So now let’s discuss my horrible failed attempts at exercise, healthy eating, yoga and meditation. So I was determined at the start of the year to make huge improvements in this area, but it really hasn’t happened.  Life in general the past few weeks has been crazy, a lot of running around town which leads to not-so-healthy eating. I’d say I manage to eat healthy around 50% of the time, so not too bad considering.  I’ve gotten better this past week at eating more healthy meals, so I’m getting there.  Exercise really hasn’t happened at all.  I know people say that you have to make time for yourself and if you don’t exercise you are just making excuses for yourself, but most of the time, I just cannot take time for myself.  My kids are not fans of TV so plopping them in front of that for a distraction really doesn’t work, and I’m not going to ignore them so I can spend time exercising.  I realize some people feel that’s okay and that’s their thoughts on things, but I have realized life is short and so I would rather spend my time with my children as opposed to exercising.  I could exercise early in the morning or late at night.  But really at night I have no energy for exercise, and typically when I get up in the morning it takes me a good hour to function, so it’s just not gonna happen.  When the weather gets better I can at least spend more time outside and get exercise by walking around, but actual exercise in the house doesn’t appear to be happening anytime soon. Yoga has been a huge fail as well.  I was hoping to start doing that more in the evenings, but normally after the kids go to bed I have no desire to do that.  I’m hoping to start doing that more in the mornings, when I’ve done that in the past it does tend to help make my day go better, but all depends on if the kids cooperate and stay sleeping because once they are up it becomes a disaster.  Then my huge failing point in general: meditation.  I really do suck at meditation.  I have tried all types and I really do fail at this.  Now I do try to meditate prior to going to bed at night, and I’d like to say it helps me fall asleep, but I have no idea if it helps with that or not.  I do some breathing exercises and try to meditate each night. I’d like to start doing some of that in the morning as well.  So I have goals of accomplishing all this stuff in the next month.  Hopefully it happens, but if it doesn’t I’m okay with that too.  Spending time with my family is important too.

So all in all, my month wasn’t super exciting.  For next month I do have the goal of getting in better shape and eating healthier.  I’m getting better on the healthy eating, my body tends to be cooperating more on being able to eat certain things more often.  Greens really were my downfall, my body just wasn’t handling large quantities very well in the past and it was making me feel sick. I really need to avoid all gluten and cut out a ton of sugar as well, as those really do affect how I feel. I don’t follow any particular diet as I really have not seen a whole lot of success from people following any set diet, there are success stories from people following all types of diets, but along with those success stories there are 10x more failures from people following those diets. I think when it comes to food and diet, everyone is different and what works for one person, may not work for another.  But for me I have learned prior and since HSCT that my body doesn’t like gluten or a  lot of sugars, so I plan to ditch those things.

But that was my month, nothing all too crazy.  Things seem to be holding steady, so I can’t complain.  I don’t have any more appointments until May when I have my 1 year HSCT follow-up with my neuro. I have been debating whether or not to get blood work done at 9 months, which is next month, some people do and some don’t. My last blood work looked good, only thing that was low was lymphocytes, although mine tended to be in the lower end of the range prior to HSCT, so I think for me I’m in the lower end of the normal range, and like my doctor said prior, each lab has their own normal range, and I was pretty close to being in the normal range for those elsewhere in the world, just quite a bit below normal for the labs in the US. My GP didn’t really feel the need for me to have blood work done at 9 months, but said if I wanted it done to just let him know and he’d order it.  Luckily my insurance does cover all blood tests 100%, so it’s not a big deal, but I’m not sure if I really want to deal with that or not.  I’m feeling good, so I know my numbers are where they should be for the most part.  I will however get blood work done for sure at the 1 year mark just to see how things are looking, as long as I still have insurance…. So we’ll see how I feel about that next month.  But can’t complain, things are going well so far. My stemmie sisters from the UK and Australia have posted updates in the past month on their facebook pages and are both doing well.  I think we all are just enjoying life and taking things one day at a time, if there is one thing a chronic condition teaches you it is that life is short and you have to enjoy every minute of every day.

Onwards and upwards to the 9 month mark!

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Second Floor Isolation Rooms/Lounge Area Pictures (December 2016)

In case you are wondering, no I am not back at the wonderful hospital that performed my HSCT, although I would love to visit again someday to show my appreciation to the wonderful Dr. Fedorenko and the entire staff there.  But I do have a lot of blog followers who are planning to undergo HSCT in Russia in the next year or two, so decided to do a blog post on what some of the current remodeled rooms on the second floor look like as well as the lounge area and then some pictures of the outside of the hospital in the winter months as well. For those who followed my blog back when I was in Russia, you’ll remember that I did some blog posts of the rooms I stayed in back then.  But I was there during a transition period when they were remodeling rooms on the third floor and since then they have also remodeled the rooms on the second floor, and if you remember what my room pictures looked like when I was briefly on the second floor, you will see the amazing transformation that has taken place in the 8 months since I was there.

But since these rooms are newly remodeled, this blog post should be fairly accurate for the next couple years as for what the hospital rooms look like. I do have to give a big thank you to my friend who is finishing up in Russia now that took this pictures for me, so credit goes to him for these pictures.

Pictures of the second floor isolation rooms:

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And then here are some pictures of the lounge area, nurses station and hallway on the second floor.  The lounge is where you can spend a lot of time socializing with other patients and is where the birthday parties take place after you get your stem cells reinfused.

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And then here are a couple of pictures of what some of the pre-isolation rooms look like on the second floor now, a much nicer and newer remodeled room then when I was there.

And then just for fun, here are some pictures of what the hospital grounds look like in the winter months.  I was there in April/May so it was spring and when everything was starting to leaf out and flower.  Now in December everything is covered in snow.

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And then because we can’t leave him out, here is a picture of the amazing Dr. Fedorenko himself taken in December 2016!

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Dr. Fedorenko

And then for no apparent reason at all, but for those that are curious, they got new machines for the chemo drips, and they are so neat looking.  Mainly posting this for those that were there in the past, cause it’s always neat to see what things are like now, haha.  So here’s a pic of when I was there and then the new machines; first picture is when I was there, second is what they currently use!

So hopefully this blog post gives those that are going in the future a good idea of what things look like in the newly remodeled second floor. And just remember that not all rooms are identical, they vary a bit in size depending on the room, and some of the pre-isolation rooms have 2 beds in them and occasionally people have to share for 1-3 days during the pre-testing while they are waiting for rooms to open up in the isolation area. And again a big thanks to my friend who took these pics for me!

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7 Month Update (Day +215)- Hair, Salt Lamps & Health Insurance

So I previously said I’d be switching over to writing updates about once a month now just because there isn’t much new to discuss, so here’s the update for 7 months.  Got my stem cells reinfused and rebooted my immune system on May 11th. So in this post I’ll do a rundown of my past month, the usual stuff I talk about, then discuss some other things.  As many of you know already I was booted off the official HSCT veterans group on facebook.  I was a bad girl and being the rebel I am and not caring who I piss off, I dared to post things on the Russia group that were posted on the veterans group.  That is a huge no-no, as I said before when I did my side effects post, you aren’t allowed to discuss anything posted on the veteran’s group anywhere else or you will get booted.  So I broke the rules and got booted.  But I’m 100% fine with that because quite frankly I think it is ridiculous that people planning to get HSCT in the future are not being told the truth about many things.  Just adds to the numerous list of HSCT groups I have been booted from, but at least I’m in good company, there is a large group of HSCT veterans that have been booted from many groups, in fact some are pondering starting their own HSCT group that actually speaks the truth and doesn’t sugar coat anything.  Not sure if it will happen, but certainly may at least help inform people a bit more before they make any decisions at all pertaining to HSCT. And the Russia group itself is becoming difficult to deal with, anytime I would comment about anything that was posted on the veterans group or that compared protocols from different places I’d get nasty private messages from people on the group that were avid Mexico supporters, and that continued on and I just decided that it really wasn’t worth my time anymore to even bother posting or commenting, so I took myself off the group.  Not worth the stress of dealing with idiots.  So I’m no longer on any HSCT groups and my life has been so much more enjoyable.  Truly I think this is the reason people stop posting on those groups after they get their HSCT done, it’s not worth the stress of dealing with the people on the groups.

But enough about that shit for now, let’s discuss me and how I’m doing.  So 7 months ago I got my stem cells back, it was an exciting day, changed my life for the better.  So last month I did a super long elaborate post going in great detail about everything and anything about my life after HSCT, so I don’t need to touch on all that again.  I only have had one medical appointment since my last blog post and it was my 6 month follow-up with my actual GP.  It was pretty laid back like always.  I had my blood work done the week prior and so we had discussed that, as well as how I was doing overall, chatted about other things, the procedure, he asked about my kids, usual things he does. We decided that unless something comes up I really don’t need to see him again for another year. When I want blood work done I just have to let him know and he will order it and post the results for me. So nothing all too exciting there.  My next appointment scheduled is in May with my neuro, which will be at the 1 year mark from my HSCT procedure. Now onto other stuff.

First off, let’s discuss hair…. What the hell do you do with this messed up chemo curl look, I mean really, it is ridiculous…. Some people shave it off a few times until it regrows normal, but many people just let it grow.  For most people the hair grows back curly and then if they had straight hair prior it eventually straightens out.  I had somewhat naturally curly hair prior to this so now mine just looks ridiculous.  There is just no controlling it.  I am beginning to think that in another month or two I will be rocking the Bob Ross look.  For those that have no idea who that is, he’s a painter who had a TV show on PBS for years and had a crazy little afro going on. I can only hope that along with his hairstyle I can miraculously learn how to paint beautiful pictures with happy little trees.  But art is really not my thing, don’t have the patience for it, and I really fail at painting, so that happening is not looking promising, but never know…  I could gel it back or do something to make it look less crazy when in public, but for now I am still wearing a bandana when in public, I have plenty, so it works.  And now with X-mas coming up, I have several themed ones for the holiday, so I can look all festive. But here are some current pics at the 7 month mark of me and my hair, don’t worry if you have not had HSCT done yet, one day you can have freaky hair like this too, haha.  Don’t mind my glazed look, it was late in the evening when I took the pics and it had been a long day.

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So how have I been in the past month? Well overall I feel pretty freaking good.  It seems like once I got past the 6 month mark things changed for the better.  There have been a lot fewer down days, seems like things are leveling out now and perhaps I’m at my new normal.  I know things can still change and fluctuate for the first 1-2 years, but for now I am happy with how things are going. I have stayed constant with my improvements, nothing really new to report.  Although I will say this past month I have really noticed that my energy level is much higher than it has been since being diagnosed with MS. And what I mean by that, is that I can go all day and not feel tired doing regular every day tasks. I can get up, make breakfast, deal with the dishes, cook meals, do laundry, clean the house, play with my kids, and do whatever else I need to do, like trips into town, and still have a bit of energy left at the end of the day. With MS and even early in the HSCT recovery stage I couldn’t do that, I would have to pick and choose what tasks I would do in any given day as I just would not have enough energy to accomplish everything I wanted to do.  And even then sometimes fatigue would rear its nasty head and just stop my in my tracks.  I’ve had a couple of days where fatigue has crept in and limited what I could do, but those days are far and few between.  And in the way of improvements I did have a short span where I actually had more feeling in my feet then I have had in the past, so while it didn’t stick around for all too long, it shows that the nerves are doing something there, so there is hope to regain more feeling in my feet eventually, but even if that doesn’t happen, I’m fine with that.  And then just random information, my chemo lines on all my nails have finally grown out, so between the 6-7 month mark is when they finally disappeared completely. I’ve learned my fingernails grow significantly slower than my toenails.

I know fertility is always a popular topic amongst ladies of child-bearing age that are pondering undergoing HSCT, so I’ll discuss female related topics for a bit. If you’ve followed my blog you know I’ve been getting regular periods since a couple of months after being home and that has not changed. I had a month in there where I had one, then had another one about 2 1/2 weeks later, then have been back on around a 28 day cycle since, so I think my body is trying to figure all that out. Now every time I do get my period I always know that it is coming because about 3 days prior I start having more old MS symptoms pop up and they tend to stick around through the length of my period, this happened pre-HSCT as well and it’s not surprising that it still happens, it seems to be a common occurrence with HSCT veterans and really not a huge deal.  Annoying, as it does often lead to a bit more fatigue during the day and limits what I can do, but can’t change that so just have to embrace it and accomplish what I can on those days.  The last few months I’ve had little to zero pain from my endometriosis, which is just amazing really as it was brutal at times throughout the month and the worst when I’d ovulate and during my period.  I guess less pain with that is an added bonus of the HSCT.

Everything else really has been holding constant, nothing super exciting to report.  As for side effects from the whole procedure, for the most part those have subsided.  I do still get a bit of hot flashes and chills a few days prior to getting my period, but that seems to be the only time that is happening now.  The only other side effect from the treatment that is rather annoying especially now in the winter months, is the fact that my body does not like to regulate temperature that well at the moment. If the temperature drops below about 70 degrees then I get super cold, I am sleeping with numerous blankets and am wearing far more clothes than I normally do in the winter.  And currently the highs are in the teens and low twenties with nights going below zero, that’s in Fahrenheit, so it’s cold and of course if it gets cold here it always comes with high winds that makes everything feel even colder. Extreme temperature change and rain/snow often cause me to have a bit of spasticity and muscle tightness pop up in my lower legs, that was more of an issue about 1-2 months ago, it hasn’t been as bad lately, maybe my body has gotten used to it.  Still pops up once in a while, but not too bad.

Other than that this past month has been pretty uneventful.  My stemmie sis from the UK had her 6 month follow-up MRI done and it showed no new lesions and no progression, so that is good.  My stemmie sis from Australia hasn’t had MRIs done yet, but her EDSS score is now zero as per her last neuro appointment.  They both have public pages on facebook for their journeys and shared this info on there, which is why I’m sharing it. So good news all the way around.

So how have my diet, exercise, meditation and yoga been coming along?  non-existent to be quite honest.  I have tried to eat healthier and I have managed to stick with my pre-HSCT diet about half the time, but with the holidays happening last month and this month and lots of running around town, it often is hard to stick with healthy eating.  I know all the MS diet experts would say that is no excuse and you can easily come up with something healthy to eat, but most of them also are single or have older kids and basically make themselves food and make everyone else fend for themselves, which with young kids that doesn’t really work.  Yeah I could just eat a bunch of salads, but quite frankly, my body is still getting used to eating tons of greens and other fresh veggies so eating large quantities of that isn’t something my body particularly cares for. I have made it a goal and priority to focus more on getting back into healthy eating for next year, once we get past the holiday season.  As for exercise that is about the same.  My goal was to try to do more of that when my youngest was napping each day, but given the hectic and crazy schedules of the past few weeks that just hasn’t happened. Many days I’ve been in town a couple of hours and that really ruins the whole day, so then during nap time I have to get other things done.  I know exercise should be a priority but there really isn’t enough hours in the day and quite frankly I’d rather spend the time hanging out and playing with my kids than exercising. Then in the evenings I just don’t have the energy to exercise.  I could try to do it in the morning before the kids wake up, but we heat our house with wood, so the house is often quite chilly in the morning because the fire tends to go out in the early morning hours, and so I spent some time each morning cleaning out the woodstove, starting a fire, and attempting to get the house up to a normal temperature, and usually somewhere in that timeframe my oldest wakes up. Yep I’m full of excuses, but it really is difficult to squeeze that into my life right now.  Another goal for the new year.

Then as for meditation and yoga.  Yoga has been a complete fail.  I often would do that in the evenings before going to bed, but lately I’ve been trying to get things done around the house and doing other tasks and just haven’t had the time.  I may try to start doing that in the morning before my kids get out of bed, but the downside of attempting to do that in the morning is the whole cleaning out the woodstove and making a fire takes time and then my oldest wakes up and really limits what I can do before my youngest wakes up. The warmer months of the year really are much better for the whole exercising and yoga aspects of life.  Now meditation, while I completely fail at that whole thing, I have attempted to meditate each night before bed.  My mind constantly wanders, so it’s hard to focus during the meditation, but I do some breathing exercises and focus on my breathing, and try to just relax my mind.  So that may be the one and only task I’ve managed to accomplish this past month.

Now one hippyish thing that I have incorporated into my life this past month is a Himalayan Salt Lamp. I’ve seen people posting about these things for the last several years and did some research into them, apparently these were all the rage for health benefits in the 1700s and 1800s and even into the early 1900s, they are just now making a comeback amongst the hippies and holistic people of the world. They were so popular back in the 1700s and 1800s that blacksmiths had templates for making numerous salt lamp holders for people’s homes, found that out from some of my husband’s metalworking books, the joys of being married to a blacksmith I suppose, learn all sorts of interesting historical facts. So there are many things they are supposed to help with, whether all is true or not is up for debate, but there is some actual scientific data to back up some of the claims, like it can help balance ions in your home and can also help naturally purify the air. Although to do that for your entire house, you would need numerous salt lamps in every room, so not really practical unless you are rich and can afford tons of these lamps, or a couple of really gigantic ones. But I have one smaller lamp, one that weighs around 8 pounds, so technically that size of lamp is rated for a desk or small office/room, nothing crazy. But I mainly got it to keep on at night in my room on the desk by my bed to help purify the air around the bed when I sleep.  I have an actual air purifier that I run in the bedroom during the day, but it is not the quietest and I prefer no noise at all when I sleep, so the lamp seemed like an interesting option to see if it would work.  The lamp I got has a dimmer switch so I can adjust the brightness at night if I don’t want it quite as bright. I really wasn’t sure how this would work for me as I also like it pitch black when I sleep, but the light isn’t too bad, kinda has the glow like a fire would, so in a way it is rather relaxing and soothing.  Is quite nice having it turned up all the way when I’m attempting to meditate before I fall asleep.  Now does this lamp actually work?  Well honestly I have no idea at all if it works for purifying the air, which was the main objective of it.  But I will say after I got it I have managed to sleep better at night.  And in doing more research into these lamps, many people claim that it helps with sleep as well, I don’t know if I really buy into that at all, but hey if it works I’ll take it.  But regardless it is a neat looking lamp and I like how it looks, so I’ll incorporate it into my life.  But here’s a pic of my lamp in all it’s glory.

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Himalayan Salt Lamp

So what else have I been doing in life.  Dealing with the fucked up health insurance system in the USA. Some lovely states in this country, like mine, did not expand medicaid like they were supposed to, which leaves a large majority of people in the state in the healthcare gap, which means you make too much to qualify for regular medicaid, and not enough to qualify for a health insurance subsidy, which means you have to pay for the full amount of health insurance out of pocket, when those making way more money then you, end up paying way less for health insurance because they get a subsidy.  Makes sense right? Let’s fuck over people who don’t make that much money.  I could go on and on about this, but I’ll spare you. And then the plans you can choose from vary depending on what county you live in, so some only have 1 company offering plans, others have more, so if you live in a county with few options, they can charge asinine high rates and get away with it…. So health insurance for us for next year is almost $900 a month, we get zero subsidies, so it is all out of pocket.  And coverage is not that great for that amount of money. And someone who makes double what we do pays the same amount for insurance but gets $600 a month back in subsidies, so only pays $300 a month total, seems fair and logical doesn’t it?  I am a fan of socialized medicine, seen how it works in other countries, and have seen how many people lose everything they own in this country when people can’t afford their medical bills.  Then with the whole US election and the chaos happening with that, it is really hard to say what will happen to health insurance after Trump takes office.  Being diagnosed with MS, makes me have a pre-existing condition, so there is a very good chance that when all is said and done, I won’t be able to even afford medical insurance for myself, even if I am completely healthy, I’m labeled, so fucked.  So lots to stress over really.

Other than that I’m basically just trying to live life and enjoy every day.  Never taking a day for granted.  Went and checked out a local Christmas light display one night, it’s one you can walk around on a trail.  Pretty pathetic really, but the best this area has to offer. Here’s some pics from that.

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So all in all, not a super exciting month.  I’ll do another monthly post somewhere around the 8 month mark.  I may do a couple of other posts prior to that on some various topics, one being an updated food post for Russia and perhaps a post on what the current isolation rooms look like in Russia, all depends on if I have the time and if I get some pics from a friend that is currently there being treated.   Onwards and upwards to 2017!

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