Friday, May 11, 2018

Post surgery week 4. Seizures?

Today makes four weeks into my recovery from gj tube replacement/endoscopy and Endometriosis surgeries. I am well overall as far as surgery is concerned. My pelvis of course needs Physical Therqpy yet again. However it's a specialty therapy that's only in the valley. (A.K.A. Three or more hours to and another three hours home, every week.) However with my current Neurological issues I am not able to travel that often. Especially in the summer heat. I came to recollect after feeling funny when I woke up the other day, a memory of the night prior. It was about 3 bits and pieces of what is highly suspected to have been a seizure. All I remove we is my whole body tremmoring viciously, while totally locked up arms out straight and crossed. I remember being confused and afraid but, I also had the "stroke" face with eyes rolling back, and tongue going back as well. And it lasted longer then the others that normally last 60 seconds top. This one was a very long while from the bits I recollect. I also didn't have the ability to talk and I remember trying to talk (to ask for help.) with no success. (Normally Mr. Wrecker alerts and wakes up and goes and gets  my parents. But he was actually asleep. So we will do an EEG. I have not stopped feeling short circuited, tremmoring, having stroke face, numbness in tongue, uncontrollable tongue movements, and going into glazed over periods since that night. Though I had a good day yesterday. (I needed the break.) It is a little scary but the other day God told me "I would be okay." So I will pray and rest in the knowledge that no matter what happens because of Christ I will be okay. My Dysautonomia has been flared hence the seizure. It's not often or necessarily common but we can have seizures. I also have a migraine cluster cycle again the past two weeks. I have had fevers off and on for weeks as well. I have had body aches and joint pain. I have had more neuropathy trigger point pain. I'm living with tremmors full body. The IVIG has offered benefits but we are pausing it to see what symptoms of any it's causing me. The cromolyn sodium has really helped my mast cell issues. The rashes are gone now. Today, due to the flare up. I am going to have HomeHealth nursing come and do IV infusion of a huge dose of steroid (yikes steroids are so harsh to my body!) and labwork, since I haven't been able to drive to get my labs. It's a four day, daily IV infusions. He says that I have autoimmune POTS. Since when I fever with my onset flare up, clearly the immune system is active. My body is attacking itself. Despite the IVIG and Immuno suppressant therapy. In August what happened, was I started having clear Sjögren's syndrome issues progressively. (I am currently suffering from Sjögren's syndrome.) but isn't it interesting the Sjögren's started all of this past on the essentially? I agree with my Nuerokogist, I have autoimmune POTS. I also see the correlation between Sjögren's and POTS as we know there is a chunk of info. out there stating that POTS can be caused from Sjögren's attacking the ANS, or at the least we know it is a cluster condition with POTS. If it quacks like a duck, it's a duck. I am trying hard to stay in the pathways program despite being so sick. I have done very well but, I struggle obviously with attending the gatherings. I'm on my last semester. Disability doesn't need to define us and I will keep trying, and fighting everyday. I had a case of the nerves lay night about today's infusions and I also realized that my port will be accessed all week. I dread having it accessed for several days. I can say with the physical decline, I miss my old body.
But my new body teaches me a lot about the path of true resistance, and anchors me in this life. Everything happens forms reason. For now I endure the bad days and really find joy in simplicity. I had a good day during the day time yesterday. (As photographed above.) Though in the evening, like clockwork, the severity of my illness occurred. I was able to get out of bed and get ready for the day. I haven't out makeup on hardly at all lately. People think if I look okay I'm fine but truly makeup is a coping mechanism for me, not a way to measure my health. You can't see my kind of sick by looking at me. I was outside for a minute enjoying the beautiful sun when the spirit nudged me... "The sun will always shine again." And I promise you it will. -Chelle

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