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.
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.
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.
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!