Another day in paradise, aka Isolation. Actually it’s not too bad. It’s quite nice and peaceful actually. Gives you a lot of time to reflect on life in general. That can be good or bad, but it really opens your mind up and allows to really think about everything that is important. I mean with MS you never knew what your future held, any day could have been a bad relapse that could paralyze you, kill you, cause your life to be a living hell, you just never knew. I mean doctors say MS isn’t fatal, but everyone with MS knows it very well can be, everyone knows someone with MS who has died from it in a relatively short period of time, maybe it wasn’t technically MS that killed them, but a direct complication caused by the damage the MS caused, same thing really, just a different term. And there is the exact opposite, some people live for decades with MS with no issues at all, it’s a very individual and personal disease, but regardless you never know when the MonSter will strike and take you down, and a bad relapse can lay you up for days, weeks, months, years. My bad relapse that got me diagnosed, took damn near an entire year to get me mostly back to normal. It wasn’t easy, it wasn’t fun, especially with a baby, life was living hell, and other than my husband nobody had any idea on the outside what my life was like. You put on a fake face and act normal in public, but what is going on inside the body is a whole different story.
Many people who get diagnosed with MS, get the diagnosis in a doctor’s office after complaining of various issues over the years, perhaps blurry vision, tingling, numbness, some weakness. Usually gets blown off for years before an actual diagnosis. I went in full-bore with my diagnosis, I was diagnosed via MRI scan in the ER with a bad relapse with a very large, very nasty active lesion on the worst part of my C-Spine. Get the diagnosis of MS and then told this is the worst place you want a lesion to be, then get sent home to take it all in, talk about a lot of emotions to deal with, along with having a 3 month old baby that I was physically unable to care for because I couldn’t stand upright, walk alone, think clearly, or have the arm strength to pick up my child.
A bit of background on me and my MS. I suffered a late pregnancy loss, which needless to say is not an easy thing to deal with in general, the whole giving birth, not taking your child home, telling people, listening to assholes spout their expert opinions on this topic, god’s will and all that bullshit. Really nobody wants to hear it, offer to listen and nothing else, seriously it’s the best thing. Then the emotional issues that go with that and other than my husband, I really had no support with that at all. I had friends offer advice which was great, but other than my husband I was on my own, literally nobody else cared at all. I opted to follow doctor’s advice and try to get pregnant again after a single cycle and succeeded. About 12 weeks into that pregnancy, actually right after I had an ultrasound done, that night I started getting burning and tingling running down my legs and into my feet, didn’t think it was a big deal, I had lower back issues with past pregnancies and figured it was sciatic nerve related, I knew that could cause that, especially in back to back pregnancies. I brought that up at my next appointment because it was turning into numbness as well, and I was having balance issues and vertigo. Doc said yep sciatic nerve related, happens to lots of pregnant women, deal with it. It did get worse during the pregnancy, but every time it got chalked up to sciatic nerve issues, pelvic girdle issues, and pregnancy hormones. Doctors suck really, they blame everything on hormones. So my pregnancy was not a fun one and was rather miserable and my symptoms never got better the whole time, but was told after delivery everything will go back to normal. BULLSHIT!!!!
So then we get to the birth of my youngest, literally 3 days after she was born I felt horrible. I had zero energy, I struggled to walk, arm strength was shit, no appetite, nausea, I was miserable. I ended up at the ER on Thanksgiving night, it was that bad. I never go to the doctor by the way, so when I go, it’s bad. Doctor looked at me like I was a complete loon, said it is pregnancy hormones, all women are like this after giving birth, they gave me fluids and sent me home. Said I should feel better in a few weeks. I struggled for weeks, it got a bit better but not much, but you know these pregnancy hormones can last up to a year they say, so I figured god damn I had an amazing first pregnancy, obviously I lucked out and now I’m stuck with this shit. Then when my youngest was almost 3 months old it got way worse. Everything that I had going on was getting way worse. I had zero energy, I struggled to walk, I struggled to pick up my baby, nausea, dizziness, vertigo, eye pain, I had tingling in my feet, legs, hands, arms, belly, basically my entire body had surface numbness, at the end I couldn’t feel my fingers or hands at all, it was horrible. Went to Urgent Care, they did some tests, chalked it up to pregnancy hormones, happens to everyone, told to go home and check up with my family doctor the next day. Went to the family doctor, he did some more tests, he also chalked it up to pregnancy hormones. And at this time all I’m thinking is that this is the biggest load of shit I have ever heard, this cannot be hormones, something is seriously wrong here and nobody will listen to me at all!!!!!! Finally on the weekend it got so bad I really couldn’t function and my hubby took me back to the ER. Finally I got a younger female doctor and I just started crying and said something is horribly wrong, this is not pregnancy hormones, something is wrong, and I can’t take it anymore. She looked at all my test results and said I have a possibility of what it may be and I don’t want to scare you, but it could be Multiple Sclerosis and I’m going to order a C-Spine MRI, she warned me that I may be waiting there for several hours to get it done, but requested I wait for it. Well at this point in time, I would have waited all fucking night, I wanted an answer. I got my MRI done and in an hour time she came in with a nurse and a box of kleenex, not a good sign. She broke the news, said my active lesion is very fresh and active and in a very bad spot and they were going to hook me up to IV steroids immediately. I also had several past lesions that would line up time wise to after giving birth and earlier on in that pregnancy. I was sent home that night to take in all that news, wired on steroids, so no possibility of sleep and now a whole lot of research to do on my future.
So that was followed up by a full 5 dose round of Solu-Medrol, the really potent stuff, the highest doses they will give out, and oh god that made my vertigo so awful one night, I physically couldn’t leave the bed the entire night, any movement of my head at all would have me dry heaving. I was stuck in one spot in excruciating pain not being able to move. I seriously think dying would have been better that night, it was the worse day of my entire life, and I am not lying when I say that. Death would have been sweet relief at that time. I met with a neurologist that week, did a brain MRI, got the whole run down. It’s not good when the neuro says well the good news is your don’t have much activity in your brain except around your brain stem and optic nerves, the bad news is it’s all in your c-spine in bad locations. I was tested for NMO, tested negative for that. So my prognosis was that since it’s in my spine, most meds won’t help and to hope for the best and that no more lesions form and that I’m able to walk or function in 10 years. Ah, the joys of having 2 young children and being told you could be paralyzed or dead in 10 years, just what you want to hear. But I started on Copaxone anyways, don’t think it did anything, but it cost a lot of money and was painful to inject. I then continued to relapse almost every 3 months on the dot, not quite as bad, most were bad optic neuritis related, once to the point my eye pain was so excruciating I wasn’t sure how I could function with it. My last relapse was November of last year, I’d been free of relapses since then, but i also was mega-dosing on Vitamin D as well, which supposedly helps better than most DMDs.
My neuro did make the mistake of telling me that there is a possible cure in sight, it just was available in Europe and super expensive and still too dangerous. So internet here I came. I found out about HSCT and that it was in clinical trials in the US. I also found out that I do not qualify for the trials in the US because my MS is not typical, in my spine, I haven’t been diagnosed long enough, my EDSS score isn’t bad enough, the whole nine yards. So then I did more research and found all the legit locations that were doing it worldwide. Before I came to the decision to do this I did a ton of research, my husband did a ton of research. I know all the pros, all the cons, all the risks, the future risks of cancer, future risk of other autoimmune disease, menopause, etc. I am an expert at whatever happens. Does it have risks, hell yes it does. But god damn I will take those risks to have a chance of stopping this disease. I want to be able to be alive in 1o years and functioning for my kids, I’ll do anything for that. A normal person might not think like that, but when you have something like MS and know the possible outcomes, you will do anything possible to try to halt progression. Could this treatment not work for me, I may fall in the percent it doesn’t work for. But dammit I will know that I have done everything possible to try and get rid of this disease. Where my lesions are in my spine, I most likely will see no improvement with some of my MS symptoms, I most likely will never be able to feel my feet, I probably will always have balance issues, I may not regain full feeling in my hands. And I’m okay with that, stopping progression is 100% my goal. There are other research projects out there now to regrow myelin and repair damage, in the future that could be an option. So that’s my full story about why I am here. Now I’m being 100% honest since I have a lot of free time on my hands. My neuro does support this type treatment, he has had patients in the US clinical trials, although not for MS, but for other variations of AI diseases that are similar. Of course he cannot support me doing this overseas. My neuro does know that I was planning to pursue this option overseas, I brought it up, I got my date in Russia 2 months out and shortly after my last neuro visit, so I’m really not sure if he knows I am here, but he’ll find out in July at my appointment if not before then. Now my family doctor knows all about this, I gave him all the info and he’s going to deal with my follow-up blood work and medications, whether or not he has told my neuro, I have no idea. Could be a fun neuro appointment in July!
I’m writing this blog as honestly as possible about my treatment, the good, the bad, the ugly. If it fails for me, I’ll be honest about it. If it causes me other medical issues, I’ll be honest about it as well. I have nothing to hide. I just want it all out there so others can see what the journey is like. Going into this my EDSS score is around 1.5, fluctuating higher and lower at times. I’m fairly functioning, I can walk and do things, my main issues are I cannot feel my feet, I have balance issues, my left leg doesn’t always cooperate, my hands are numb most of the time, I don’t have a ton of arm strength, I occasionally have bouts of excruciating nerve pain in my arms and back, I have some cog fog, and I have optic neuritis in both eyes that flares almost daily in some way, shape, or form. I have heat intolerance and other symptoms do flare up when I’m stressed, get too hot, etc.
So anyways that is my rant for the day, made me feel better and gives you background info on me, ha. And yes I do have a filthy mouth, sorry for that, I worked a lot of jobs around men, it’s how you talk in the woods, I’ve got a potty mouth, just gotta accept me for who I am, it’s just words.
So now onto my actual day, hahaha. So I woke up at 5:00am, couldn’t sleep anymore. Decided to color because well what the hell else do you do that early in the morning. Finished my picture up from yesterday, still impressed with it, it took a lot of hours and patience, and I am not a patient person, so it really was an amazing feat for me, you have no idea. It impressed my husband and that says a lot because he is the only person who truly understands me. I used 6 colors in the whole thing. It’s far more detailed than most things I would attempt. I’m more an abstract person, fine details are not my thing.
So after that was finished I switched to coloring a fox picture for my oldest, since she is obsessed with foxes and the song “The Fox” by Ylvis, yes that one, you all know it, don’t deny it….. She even has an orange fox hat to wear when listening to the song, sometimes as a parent it’s just easiest to go with the flow. That one is still a work in progress. But anyways in that time frame the nurse came in around 6:30am to do the daily bloods and steroid infusion. These neck lines are great, annoying at times, but a one-stop shop for everything else. Not getting stuck with needles each day is a good thing. Then she did the blood pressure and temp check, all good there as well.
8:40am is when Breakfast #1 arrived. It’s one of my preferred breakfasts here. Cream of wheat type dish, egg white square, bread, tea, and more copious amounts of sugar that they refuse to stop giving me so matter how hard I try to make them stop. Then like always I’ll discuss Breakfast #2, it showed up around 11:25am today and was quite nice. A chicken leg, 2 cooked apples, baby yogurt, and the cup of plum tea. Actual chicken is a rarity here, so to have it show up in actual chicken form is nice. But like always I was hungry way before the first food of the day arrived so I had a protein bar, granola bar, and cereal bar prior to any of the breakfasts. I gotta eat when I get up, it’s my thing, can’t function without food, and these steroids just aid in this hunger.
Dr. Fedorenko was a little later in his rounds today, he showed up around 10:50am to do the daily blood pressure check and other vitals, all good. Then he gets down to business to discuss the blood work. My Leukocyte counts are at 0.08, still in perfect range, my platelet counts went up a bit as well, even better. He feels my numbers should start rising tomorrow and I may be out of Isolation on Thursday depending on my counts, we will see. But I am liking this whole isolation thing, so I’m content here. I mean even when I get out of isolation I’ll still be confined to a mask and indoors for a bit before I can go outside, so it’s not like much will change, minus the crazy room cleaning that occurs every day, could do without that.
My room did get cleaned around 11:00am today by my girl Olga. Boy she really takes her cleaning seriously, my room was pristine when she was done, and my mirror is now spotless, that girl can clean. And she is determined that she must scrub my back, she seemed kinda bummed when I informed her I’m crazy flexible and can totally wash it myself. She obviously trusted me and let me take my alcohol bath alone. Other than the first day, the other cleaners could have cared less about my back, but Olga, she’s like a mom here, she wants you spotless and healthy. She did seemed concerned about my sugar stockpile though, she came up to me and said, “Sweetie, why you not like sugar. Russians love sugar on everything.” I tried to explain that I like chocolate and candy but the sugar is just too much, especially 4 large packs a day, she just gave me a loving look like I was completely nuts. But on the plus side, later today when she came in to switch out my trashbags, she took off with my entire sugar stockpile, maybe to take home for herself, I don’t care, it’s finally gone!!!!!
As for what I did with my free time today, I spent most of it cross-stitching. I made a fair bit of progress on it. I mean it doesn’t show at all, but I covered up a bunch of the fabric, so I at least feel like I accomplished something. Of course while rocking out to my Rammstein, because that is just my cross-stitching music, I’m weird like that. And then a bit more coloring. And then some time just laying back pondering life, hence the reason for my ranting blog post….
So at 1:20pm the nurse came to take blood pressure and temps, all good there again. 2:40pm came the stimulation injection and second steroid infusion of the day. Nothing super exciting with that, it’s just routine now. Back to the awesome neckline, means no being jabbed, well other than the injection shot, but it’s a smaller needle now, not really painful. Then Dr. F stopped in around 3:00pm for his final check-in before leaving for the day, he always stops to see if everything is okay, if we need anything, have questions, need a hug, whatever, he’s up for it all. He did hook me up with more of the tasty protein drinks though, gotta love the man for that. Nurse took all the nasty coffee ones away and brought me the good stuff.
So now back to my ever favorite topic of food here. Today wasn’t a bad food day. Lunch itself was nice, which usually means dinner will be awful, but not today. Cooks got creative down in the kitchen. Lunch showed up around 1:40pm. It was another chicken leg, crazy to get 2 pieces of actual meat in one day. Along with cauliflower, blended veggie soup, and bread. I diced up my cauliflower, threw it in the soup, added in some pepper and garlic powder and made it a more interesting soup. Then dinner showed up around 5:50pm and it was a beef stew mixture featuring beef heart, bread, tin of beef baby food, cookies, and a tea bag. I made garlic bread out of all my bread, it really hits the spot. But for the most part the meals today were all winners for me and I devoured them all, and then some….Well except the baby food, it goes in my stash in case I get really desperate, or it’s coming home to the states with me for a friend as long as it gets through customs….
The night finished up around 7:00pm with the nightly blood pressure and temp check, still all good there. The only other highlight of the day was Aussie Cathy had her hubby do a shopping trip for us and drop off food, so I had him pick up a loaf of white bread, in case I continue to be ravenous, so I have something to eat, since I’m running out of all my backup food. But he stocked up on food for all of us in isolation that needed stuff. He’s an awesome man. He drops it off at our doors and then we have to ring a nurse to bring it in for us. Nurses probably all think we are nuts, but whatever, us girls gotta eat in here!!! And kudos to him because the weather was nasty today and rainy, but he sucked it up to bring us food, he’s a real man.
So all in all that was my day, a nice long rant for you all, summed up with my actual day itself. I like to add some variety to my blogs once in a while!
Isolation Day #4 (Day +05), the countdown to freedom has begun…