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.
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.