My new immune system is 3 months old!!! Well to be 100% technical that will be tomorrow on August 11th, but if we go by Moscow, Russia time it is already tomorrow there, with all the different time zones around the world it gets confusing. Seriously in trying to keep in touch with my stemmie sisters and brother it is just confusing trying to figure out what day and time it is where they live. Now with my buddies from the UK and Norway it isn’t too difficult, they are between me and Russia so they have to be less than 9 hours ahead of me in time. But then it comes to my Aussie buddy and she is like 16 hours ahead of me in time, so she is always a day ahead. It’s annoying at times with all these different time zones because it seems like if anyone ever posts anything online it is during my night and I don’t see it till the following day and then if I post anything they don’t see it till the next day. Ugh, confusing and annoying, but such is life in this giant world we live in. But enough about that. So in my last blog post I did say that I would post pictures of myself and my hair this week. I figured it was fitting as my immune system is now 3 months old. My hair is starting to come in nicely and growing in more and more each week, I will say though it is not nearly as impressive as my UK stemmie sisters hair, hers is looking quite nice at the moment. I think in another month mine will be filling in a lot more, but hey at least my eyebrows are starting to grow back in nicely as well. And of course with hair growth comes the expected random ingrown hairs, but I don’t have nearly as many as I expected. But here are some pics from today. And yes the background in the one picture is a Frozen wall hanging, I have girls what can I say….
Other than the above posted pictures the week has been rather uneventful, which is a very good thing and I am very happy about that. A boring recovery is what you want, no need for excitement. Still not much in the way of side-effects from the HSCT treatment, no bone pain yet, but I am okay with that. I realize that for many people that shows up at the 3-4 month mark, so I am hoping to skip that, but we will see what the future holds for that. Also my hot flashes are far and few between now and when they do happen they are not very intense or long lasting. Not sure really what is happening with my lady parts, no sign of the evil periods returning and not much signs of menopause either, so I guess I get to wait and see what happens with that. I will say though for the last 6 weeks or so I’ve hardly had any pain related to my endometriosis so I know that my hormones are not going crazy anymore, and I will say that is a wonderful thing, because contrary to what most doctors say, that pain is often really intense and sucks and is not just in my head…But what I’ve learned over the years is that if the doctors don’t experience pain or any symptoms themselves, they just assume you are either making it up or are imagining it all, especially male doctors when it comes to female issues.
I have also been asked privately by those pondering undergoing HSCT how bad the scarring is on my neck from my CVC/neck line. For some people they are really concerned about having scars on their neck from this, I didn’t really care all too much about how bad it scarred, maybe I’m weird. I think how bad your scars end up may depend on how easily and bad you normally scar. Now on the right side where I had the larger neck catheter installed for stem cell collection you cannot really see a scar at all, but on the left side where I had the neck line installed for around 3 weeks you can see some scarring. Both from where the line was actually stuck in the neck and then in 2 spots where it was stitched in place. It isn’t super visible on me and most likely will fade over time like most of my scars tend to do. This isn’t the best picture but it gives you an idea of what my scars look like. By my lower fingers you see a smaller mole on my neck, right above that is the largest of the scars on that side that is where the line was inserted in my neck, then you can see two smaller spots a little ways above that and that is where it was stitched in place. I however also do have tanner skin so my scars don’t tend to show as much as someone who may have paler skin. At a later date I’ll try to get a better pic of both this scar and then also a picture of where my other line was installed.
How about improvements. I started off this week with a couple of down days, just didn’t have a lot of energy, but rebounded for the rest of the week. This week is the first time in a long time where I really noticed how my body and mind have changed since the HSCT treatment. My mind has been completely clear and I can focus on things much better than I have been able to in over 2 years. While a healthy person may not understand what I am talking about, I know those with MS understand, and many who have undergone HSCT know exactly what I’m talking about. Some people call it cog fog, others call it mental clarity issues, but basically it’s when your brain just doesn’t want to focus and cooperate with the rest of your body. I mean I still have some issues with that, but everything is so much clearer now. Also this week my energy level really rebounded to way beyond where it was pre-HSCT. While I don’t have the amazing energy I had pre-MS, I have way more than I ever did after having my first MS issues. Although really I’ve always had way more energy than most normal healthy people my age so perhaps now my energy level is that of a normal person my age, hard to say really, I don’t have anything to judge this on, other than my own life. Other then on days when it is super hot outside I feel great. I get up earlier in the morning then I did pre-HSCT and have no problem staying up till 11:00pm or midnight, I am not dead tired by 10:00pm and have to go to bed and then sleep until later in the morning. My balance issues are getting better and I have no problems jogging a short distance. Honestly right now I feel great. I still am lacking muscle mass and strength from the whole HSCT procedure but I am working on that. I understand that recovery can take months and there are ups and downs, but right now I feel really good so I’m enjoying it. Right now my EDSS score would most likely be classified as a zero or 0.5. I can’t complain.
As I said above, my week has been pretty boring and uneventful. I didn’t get out and do a whole lot of exercising this week, but I did do a fair bit of work outside of my house so I got my exercise in that way. I have been doing a bit of gardening which I do really enjoy as well as stacking up firewood. I really can’t wait till later in the year when I can play with chainsaws, it’s my thing, odd I know, but I used to compete in logger sports/timber sports, aka axe throwing, running with chainsaws, log birling, the whole nine yards. The crazy things people do in their younger days, right? I’m a woman of many talents, ha! The weather here this week has been a bit below average with most days averaging in the high 80s and low 90s so it has been rather pleasant working outside. Gotta take advantage of the cooler weather, since inevitably it will get super hot again soon.
Here in the USA we are in full-swing political season. Everyone in the world knows this, in fact while in Russia I heard many people’s opinions on our current presidential candidates, most people from other countries have strong opinions on both candidates, one more than the other. But here in the USA we often get bombarded with political mail during the pre-election season, I usually end up with tons of this type of mail closer to the election date, usually it is for local candidates, and it is usually always for Republicans. I will say that I live in what people call the reddest state in the US and all our major political seats always go Republican, so of course that means I get all sorts of political flyers for candidates running for offices. Ironically they are always addressed to me as opposed to my husband, I, being female, obviously am more important, ha! This week however was a first for me, I got an envelope in the mail for a presidential candidate. In a way it is quite exciting because I never have gotten one for a presidential candidate before and it is interesting to read what all they have to say in the letter, usually always wanting a donation as well…. I kind of wish I’d get one from the other presidential campaign as well to compare. I try not to discuss politics publicly and will never disclose who I vote for as political issues just cause all sorts of fights and drama especially on facebook, but I did have to take a picture of my letter just because it entertained me, and here it is…
Also people keep asking me if I am watching the Olympics. No I am not. It’s not that I don’t have pride in my country, but really I have more important things to do with my time. Plus in the US they only seem to televise events that don’t interest me at all and the commentators this year are really not that great. And I much prefer the winter Olympics because quite frankly hockey is awesome, hence the reason I often watched hockey games on the TV in my room while in Russia. While I didn’t have any idea what they were talking about, I at least understood how the game was played, and it was exciting, especially since they are far more violent in Russian hockey then in the NHL.
To finish up the blog for the week, I’ll touch on meditation and stress relief. I am really trying to live life as stress free as possible. I try to meditate and always fail miserably. I honestly do not have a long enough attention span to meditate, I just can’t do basic meditation. I do however try to do a different version of meditation outside when possible. I like to walk around outside or sit on my deck and just take in the view. I focus on my surroundings and try to not think about other things at all. Whether or not that is actual meditation I have no idea, but it works for me. It’s a great way to clear my head and just enjoy life. I focus on the positives in life and try not to dwell on the negatives. I have realized that life is short and I have no idea what the future holds so I never take anything for granted and enjoy each and every day. Also to clear my head at the end of each day I do try to color for a short period of time in my coloring book. Even 15 minutes a night of just solely focusing on the coloring really clears my mind and actually helps me fall asleep easier and sleep better. Eventually I’ll switch back and forth between cross-stitching and coloring, really depends on my mindset and mood. And to end this blog post for the week, here is a picture of what I often look at when I am outside trying to de-stress and meditate.