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:
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.
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!