So I’ve been home a little over 10 weeks now and this week was the first time since I’ve been home from Russia that my family opted to venture further away from home and have some fun. I live in a desert area and well quite frankly the desert sucks and I hate it. I despise the area I live in, but such is life, it doesn’t appear that I’ll be moving anytime soon, but one day I hope to live in a more forested area. Trees really do it for me, the desert not so much…It’s not super often that we venture out of the desert into the forest because it is a longer drive to get there, but we do try to get there a few times each year. Even then the forests in this area are more drier forests, not really my thing. I was spoiled living in northern Idaho for so long that I love the forests up there, I spent a lot of time working in the woods up there, so it’s my home. But you gotta take what you can get.
So anyways, last Thursday we opted to drive up to the Sun Valley area and spend the day up there. For those not familiar with Sun Valley, it is a ski resort town located in Idaho where all the rich fucks go to get away from everyone else. Many famous movie stars, celebrities and politicians all have huge mansions up there that they spend a few weeks a year at. Ridiculous really that they have huge mansions worth millions and barely spend any time there, but then again I’m not rich, so maybe that makes perfect sense to rich people. The airport up there is also filled with many private planes owned by those rich fucks. The Terminator himself has quite the mansion up there and airplane hangar as well. While the area is predominately filled with rich people and those who think they are rich, it is a fairly pretty area for this part of Idaho and there is a nice river that runs by the town that has perfectly clear water and it’s nice to play in, fly fish in, and have a picnic by it.
Now I will say when spending time in fancy resort towns, if you are not rich, you certainly feel out of place, but just past Sun Valley there is a neat little picnic area that many people stop and use on their way further up into the mountains and it also appears that many locals also use the pit toilets for other activities, I’ll let you make your own assumptions on that one… But we opted to have a nice picnic lunch to start our day and then spend some time playing in the river. Normally I make up sandwiches of some sorts for everyone else and I opt to eat a salad or something a bit more healthier, but given I don’t want to take any chances poisoning myself we opted to bring up a cooler with some hot dogs and other misc. picnic supplies in it along with a little grill and we cooked up the hot dogs that way. Now hot dogs are really not my thing and I know they aren’t healthy at all, but it seemed like the best option for food. After everyone finished eating we went down to the river, the kids and hubby played in the water for a while, I sat by the edge of the water keeping tabs on my youngest and splashed my feet in the water a bit. The temperature at my house ended up being 108 that day and so the temps up there were close to 100, so the weather was still hot, but it was so nice to get away from everything for a while and just enjoy nature. It was so peaceful up there and for once there was an area where everyone there was out enjoying nature and nobody was catching those damn Pokemon, I really really really hate that stupid game. But here are some pics from that trip.
As for the rest of the week, I did try and get some exercise every day, a few days we went somewhere to walk. Now however we are in the hottest part of the summer so even in the evening it is super hot and it’s kinda miserable to do much of anything outside, and when the temps finally cool down enough to get outside, the mosquitoes are out in full force and West Nile is super common in my area and it really is only a problem for babies, the elderly, and people with compromised immune systems, so I do try and avoid getting bitten by mosquitoes whenever possible. So far I have been pretty successful in my attempts, I’ve only gotten bite once since being home and that bite really swelled up. Which in reading on the HSCT veteran’s group that apparently is super common after HSCT just because of the rituximab infusion, I guess for about 3 months after getting that infusion mosquito bites really swell up. Why I have no idea, but it appears to be quite common, so hopefully in another few weeks that will not be an issue anymore. I however am really getting annoyed with going on walks in the area however, too many damn people playing Pokemon, sick of idiotic people playing that game. But here are a few pics from my outings this past week.
Healthwise my week has been rather uneventful and I will say that I prefer my weeks to stay that way. I do have some occasional neck pain related to the tight muscles in my neck, which I’m really starting to think are related to my left jaw joint, but it comes and goes and hasn’t been all too bad. It’s tolerable and I don’t need to take pain meds for it. I haven’t really had any side effects from my HSCT procedure at all this past week. I think total for the week I had maybe 4-5 hot flashes, a few days I never had any at all, so can’t complain there. Still no bone pain, which I realize for many people that pops up at the 3-4 month mark, so that is still something that could happen, but I’m content that it hasn’t yet.
As for improvements, really everything is staying about the same as it has been for the past few weeks. I’ve been spending more time outside when it’s hotter and my body is getting used to the temperatures. I don’t seem to have much heat intolerance at all anymore, which is a good thing because of where I live. I also have an incredible amount of energy compared to what I had prior to undergoing HSCT. Probably not as much energy as a normal person has, but a lot more than I had before, so that is a good thing. Still don’t have full feeling back in my hands or feet, but I’m not really sure if that will ever come back given where my bad lesion is on my c-spine.
I do just want to say for those reading my blog that are planning to undergo HSCT in the future, the goal of HSCT is to just stop the progression of the disease, anything else is just a bonus. My EDSS score was 1.5 going into this, so fairly low compared to many people. People with lower EDSS scores are the ones most likely to see symptoms improve after the procedure. They also typically have easier recoveries compared to those with higher EDSS scores. I just am saying this because I’ve seen so many HSCT veterans freak out after having this procedure done when they don’t see amazing improvements like they’ve seen in so many videos. When I started this blog it was mainly to document my journey for family members and friends who supported me in this journey and also to share my experience with others planning to undergo this. The goal was to do a post every day while in Russia to document what happened each and every day there so people would know what to expect, as all the blogs I read previously did not include day-to-day events. Several people have reached out to me on facebook and let me know that my blog posts helped ease their mind about the treatment in Russia and a couple have undergone the procedure since I have been there and I will say I am glad that my blog posts have helped some people see that it isn’t this horrifying procedure like some make it out to be. It does have its risks, but it is not nearly as scary as people make it sound.
All in all though my week wasn’t super eventful, but in recovery that is a good thing. I am pushing myself more and more as the weeks go by and am trying to rebuild my strength and muscle. I am trying to stick with Dr. F’s guidelines of always thinking positive no matter what. Then also trying my best to not stress out about things in life. I do however need to start meditating again, that has always been my weak point, I do struggle with meditation. I would totally fail at being a monk, just cannot do the meditation thing. I have however gotten back into coloring in my coloring books, I try to do at least 15-30 minutes a night, I try to not think about anything important at that time and am thinking that is going to have to pass as meditation for me.
Hopefully next week will be just as uneventful as this one. Doesn’t make for good blogging, but it’s good for me! I will say though my hair is really starting to come in now, perhaps next week I’ll snap some pics of myself so you can check out my stunning hair. I think in another month it will look pretty good.