I can not believe it is day 52. It just blows my mind. Last I wrote I was pretty sick. Actually sick…. not HSCT sick (although that didn’t help me at all). I am getting better and prating to stop the extra antibiotics soon. Nausea is not my friend with them.
I was telling a friend (and wife of a stemmie twin (CIPD) …Hey Judy) that I don’t feel the miraculous recovery some do. Now…. Please remember I was given HSCT because I have failed 5 medications and I was beat down before the transplant. I am in no way saying I don’t think it worked. I KNOW IT WORKED! I am trying to say, I didn’t have the run out of the hospital and dance the halls recovery. I know my recover is more slow and steady… Now, let’s hope I win the race. It’s funny, my body is still so off from the chemo that I haven’t recognized everything yet. There are things I didn’t even know we’re MS related that have gone away… My left wrist had miraculously stopped hurting for the first time in 2 years. My legs are a mess, (but to be honest… Physical Therapy was really hard on me this week… It’s because I haven’t used those muscles. I wish I didn’t have to go again tomorrow. #lazy. ) I do think my words flow more freely, my walking has been better and up to getting sick and going to PT! I haven’t had optic issues or pins and needles since chemo (with the exception of being sick… They came back then… But everything came back when I was sick. Totally normal.
Ok, news in my life
I am so very excited because 2 of my besties are flying in from Atlanta for the weekend. It also happens to be my 39th birthday Saturday. We have a fun weekend of couch sitting and netflixing scheduled. Woohoo. They will be here tomorrow and I promise to post of our adventure. Even staying home and doing nothing is an adventure with Yvette and Gary. I have really been staying in the house most of the time so it will be a welcome change.
Lol. I also got word from my neighborhood HOA that I was approved for a therapeutic hot tub. My MIL Fran has one in her house down the street (came with the house) and absolutely hates taking care of it, so we are moving 4 houses. (By we, I mean the hot tub guys) That will be so nice to have. My bones just ache most of the time. Anyone who has been on IVIG or any MS med really will know that feeling. Except now…. It is lessening.
Hair- it’s starting. Krista next door gave me my new favorite thing! So, my scalp has been a mess. I even had to go to the doctors because I had what I thought may have been psoriasis but was really folliculitis. My head was oily feeling, I has these sores (sounds nasty but I don’t know what else to call them… Infected hair folicules?). Anyway, she gave me a bottle of this shampoo and lotion and it cleared in a day. I swear, my hair has even grown more. Krista said its the calendula. Amazing. Best baby product ever.
Here was my head at not even its worst
On a somber note, the rain and flooding here in Texas has been a mess. It is so very sad. The places that flooded are places we visit often. It’s heartbreaking to see the water covering the shops and the wreckage that used to be homes. There are still 8-13 people missing since Sunday. We keep praying for miracles, but as the days go by it gets harder and harder. It brings back many hard memories of our days following 9/11. We didn’t know if Jason or Dan were alive or not. We would get conflicting reports and as the days rolled on, we each came in our own time to accept the fact that they were gone. It’s was almost 2 months later that we got the first confirmation. I pray for these families that whatever God has in store for them, they know the outcome quickly. Not knowing and allowing yourself to hold onto a shred of hope despite your logic is worse then the truth.