Friday, October 13, 2017

Today.

These past few months have been challenging. I have declined in my health. I've tried hiding it more for my personal sake. My heart doesn't hurt because I'm sad it hurts physically. I feel like it could explode. My blood pressure has gone from low to high, my nervous system is not doing very well.  I'm continuing to fight this horrible condition daily, with all I have. To the pint I've done all I can for now. The long days of foggy brain, fatigue, and unimaginable pain can be quickly defeating. Right now my heart rate is very high and I feel like passing out. I don't even want to go into detail because I have with so many doctors this week my head spins. There is too much wrong and I don't have the energy right now. I have so many medical treatments and tasks I find myself overwhelmed. The IVIG therapy will take six months to see if it works. I am on an very high dose of this along with an imunno suppressant therapy medication. These treatments are not easy. Though, Rheumatology is not working with me... I have made demands and other doctors are working with me. Neurology is over the IVIG for neurological and immunology purposes. Today I showed clear signs that my body is not over producing but not distributing mast cells properly. (This is common in POTS and is a result of my Auntonomoc Nervous System Malfunction. #Dysautonomia.) So we hope the IVIG helps. We also will start treatment of allergy medications to help this situation. The issue is there are too many situations. These situations are causing my Autonomic Nervous System to tail spin and we can't seem to get it to stop. It's a vicious circle. The hard part, we have no answers just tid bits of dysfunction. All I can do is my best to stay strong and continue fighting to put the fires out as they come. Keeping this body at peace is essential to best control of Dysautonomia.  I have a team of specialists but some are slacking and wanting out because I'm quote "too sick" (This brings me to a cheer analogy; when you do a cheer stunt with your teammates, there are a basic 5 positions; the back spot, two bases, the front spot, & the flyer.... If for some reason one of those teammates aren't there, you can't throw the stunt. You can't keep the stunt up in the air (Yes, I am aware that front spots aren't always necessary and that there are several ways to put up stunts. But just back to basics.... That's what's happening to my medical team. I have had one of my teammates leave with no replacement. This leaves the others working harder to try to keep the stunt up but it's all just crashing down. My health is just not able to thrive if I don't have all my teammates holding me up. Until replacements are made.) I have a hole in my belly and that specialist carelessly has decided it can just stay that way. Despite being an infection risk and I'm not having a hole in my abdomen forever. That is rediculous. (Ask any medical professional. My other doctors are livid, as am I.) other specialist have literally slacked on labwork that's been essential. My heart is heavy because the reality is this new sick can be my new normal & it can get worse.(Here is your Dysautonomia awareness. It's nasty. It's mean. It makes no sense. It is scary. It hurts in every way. It will make you cry in your car when you are so tired of the pain and you've done everything. It will make you crazy trying to figure it out or figure out what to do... And I don't have any answers right now. Dysautonomia is still a mystery. A mystery that's effecting everything in my body you wouldn't even know existed. That's my reality.)
 -this has been MY reality for ten years now. But I have faith in what My Heavenly Father told me and I know what he promised me. I also know in my preisthood blessing I was told that the next while would be tough but that it will be okay again in due time. Though right now that's hard to see... I just have to rely on my faith today. Faith defeats fear -Chelle 

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