Wednesday, June 28, 2017
Just a quick medical where I am at, update
I'm simply physically tired. The heat is just too exhausting. I mean SO tired I let myself take a nap yeaterday. (You all know I don't let myself nap due to insomnia.) I have seen my pelvis specialist and Endometriosis is finally moving in the right direction. (Took a u-turn by accident post surgery last year.) after altering treatments we are in high hopes we finally are moving forwards though I have a long ways to go. My doctor is amazing and is working hard with Me. Endometriosis is no reason to live in pain. And that's the type of Doctor you should have! Also She doesn't think o have a hernia. My belly is now weakened from too much cutting and that's my pain and weird belly button soreness. (I've had 4 surgeries through that area.) I also had my nerve conduction study on My hand/arm. So, we will see what that brings. If no info we will keep searching. There are reasons. (It could be elhers danlos syndrome. With inflammation I am feeling, I wonder if it's autoimmunity striking up.) I have had a ton of inflammation and pain all over so again, I know something is going on and I just need rheumatology to figure it out. I do have autoimmunity. I have multiple autoimmune diseases... The biggest hang up is... I have been diagnosed with Sjogren's and undiagnosed. My last Rheumatologist left it at he couldn't say "no I don't have it" nor "yes I do"... Come back in a year. So I am going to ask my kidney doctor to help me as she sent me before to an amazing one who was known for dealing with complexity bit the move happened. I need to know definetly because they have just released to all POTS patients that we should if suspiciously are undetermined diagnosis of Sjögren's syndrome we must determine if I have Sjögren's syndrome (I can start IVIG treatments and it should be successful in treating sjogrens and my Dysautonomia.) they also really are starting to find information pointing that Dysautonomia is an autoimmune disease. (Which for me makes sense.) I also am still deconditioned. So I will be in the nearer future picking that apart and entering even more complex physical therapy (I don't think it ever ends, physical therapy.) I am sure this post seems like a downer in comparison to the others. I am still doing so well. I am SO very blessed. I mean I am eating folks! Those mountains I have climbed this year... They were still tackled. I did go to the top... but now it's time to keep moving forwards and keep climbing the rest of those mountains left. Because I do still have a ton of conditions that are contradicting each other. I am still medically fragile and I am physically weak even with my great progresses. So we will start tweaking care again. I just have to get through July and August (mostly July with the heat intolerance.) Due to heat intolerance physical therapy out of town has been paused. (Since it's so severely hot where I attend my treatments.) We all feel it's necessary to avoid the heat. I have to take care of my whole body as a packaged deal. I can not regulate my temperature so heat is horrific to my condition overall. So we will break and restart probably very hard in the fall. That's my update. From the few days of medical evals. After all, "mighty change is mighty hard"- Neal A. Maxwell. Though I am so fatigued and hurting. After a trip home I still got my cardio in because I know how important it is for my body.