So before I post my whole RSD Story, I thought I would wrote a shorter update on us. Like I said previously, Aaron played in a golf tournament for The Lung Transplant Foundation and did fairly well. I was extremely proud of him for playing all 18 holes in the heat and humidity. He has had a lot of fatigue and shortness of breath lately that has been making it difficult for him to do things. He almost decided not to play, but after some convincing from me, he decided to stay in it. I think he is glad he did, even though he was EXHAUSTED afterwards.
Both of us had kind of had a lazy beginning of the week. Monday was a rest and recovery day for Aaron, and I was still fighting the pain flare. Tuesday I had to meet with the rep from St. Jude ANS about my spinal cord stimulator (for those that don't know what it is, it's basically two thin wires (leads) that are inserted into the epidural space of my spine. The leads trail down, are anchored to my spine, and are then tunneled under my skin to the "battery" or IPG- Impulse Generator. The reps program this generator, which also is part recharageable battery with specific settings to try to "cover" the areas of pain. It feels like a mesaging sensation, though it's very difficult to describe the feeling. Basically the idea is to interrupt pain signals as they travel up the spinal cord before they get to the brain). My stimulator works ok, it could be a lot better. It doesn't cover my back and hips, only my legs. If I wanted back and hip coverage, I would need a new system. It would be pretty major surgery as they would have to perform a laminectomy- removing part of one of the bones of my spine and scoop out the scar tissue blocking the epidural space, so they could put the leads there. I am really, really not ready for that, and don't want anymore back pain and problems than I already have. Anyway, I met with the rep on Tuesday, as I do from time to time, to tweak the settings to get the maximum relief and benefit from it. The past two times I haven't met with the rep I have been working with for over two years. The last time I met with some guy who was more interested in trying to sell me a new system and wanting me to have the surgery I talked about above then making what I have now work. I will NEVER meet with that guy again. The guy I met with Tuesday at least didn't try to sell me anything, but I think he screwed up my settings pretty bad. I don't know that he knew exactly what he was doing and really didn't understand what I was trying to tell him. I ended up with something that was a little better, but not really. He completely forgot about my right leg, though. I might have to go back and see my normal rep since when I lay down my legs twitch and jump from my stimulator and I have been getting horrible cramps in my back when it's been on, which is almost constantly. Whatever he did for settings is eating up my battery life, and I will be recharging my battery ( I have a rechargeable unit that has an antenna that is placed over the skin on my battery site, and it slowly charges the battery over 2 or so hours- depending on how low I let it get).
Today we went and had lunch with a group of really good friends. We have become close with a lot of people in the Duke Cystic Fibrosis/Lung Transplant group. There is an amazing community down here, and because of that, we have become close to many of them. When we moved down here (North Carolina) from Maine for Aaron's 2nd transplant, we really knew no one, but through the wonderful community that Duke has built, we met some wonderful people who can relate to our experiences. They are truly some of the strongest people I have met, and they continue to inspire me on a daily basis. They are such a wonderful group of people, and we are so thankful to have them in our lives. Mass General certainly did not have that kind of atmosphere and community, and really didn't know any other transplant people. It would have been very lonely for us down here, otherwise, since our families are still in Maine, and we only get to see them a few times of year.
I think the rest of the week is just relaxing. Aaron has a 4 hour infusion tomorrow that he gets every 3 months to help prevent chronic rejection and help his non-exisitant immune system to fight off anything that may get him sick. I am still struggling a little with the pain flare. Today was the best day out of the entire week so far, but that's not saying much. I know this heat and humidity we are having certainly isn't helping. It feels like August outside right now. My deck/patio/balcony container garden is not liking the high heat, and desperately needs water. I have never seen the soil dry out so quickly, even with the water holding crystals I have. I am also hoping the water at the pool is warm enough for me to go swimming (cold is extremely painful, and if it's still too cold, I won't be able to go in). I can't wait to get my paperwork signed so I can go back to aqua therapy (well member swim since I insurance will no longer pay for me to continue seeing a physical therapist. I wasn't making enough progress, and my pain levels were still staying around an 8/10 on most days. It definitely helps with the stiffness and muscles issues from the fibromyalgia. Hope everyone has a good rest of the week, and manages to stay cool. We won't be outside much! My RSD Story is up next!
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