Monday, September 26, 2016


Today is brought to you by no sleep and a dose of Tylenol... Literally! (I was looking at my last update and I realized I made it sound like I am on a lot of pain meds always. That's NOT the case. I only take it a few days a month. (On my cycles, tmi. Sorry but if I'm gonna update and raise awareness... I have to be real.) and it's temporarily. That's the purpose. But that is life with Endometriosis and mostly now PFTM. Since I just had excision of my Endometriosis two months ago. I take Tylenol or nothing for my chronic daily pain... If it's too much I contact my neurologist because we need to treat the root of my small fiber neuropathy, (that's a neuropathy of the small fibers in the tissues of the skin. It has a legit test that they diagnose off of. They take 3 skin tissue biopsies and send them to a special lab in Texas. It causes skin nerve pain, messes with sensory of the skin like touching something I probably "feel things" a bit muted or hyper depending. It makes you feel like your bones are hurting . Finally an answer to that! Body aches. My skin literally gets red, swells, and burns. About half POTSies have this and the others who get it have some form of a skin condition. Lone and behold! I have Livhen Planus and autoimmune skin disease. Where my immune system attacks my skin at the dermis.) Dysautonomia, or chronic migraines. That would be use of anti seizure, nerve pain, migraine meds... If my Gastroparesis flares up to a point of not tolerating my GI hospitalizes me. But for now we are recovering still from my last surgery (I am cleared but it's going to take a while to get back into therapy and get things lined back out. Surgery worsened my symptoms. But it needed to be done. It worsened my PFTM and that is typical. I have a disease growing inside of me literally and on muscular walls... So therefore the body reacts to that. Now we treat the rest of the pelvic chaos and in time my pain will be back in control.) My lack of sleep is caused by... My poor pup is having issues again! I am honestly baffled. But we are taking good care of him and he is doing quite a bit better today. It's his eye again. (Well under his little eye gets swollen. He also had a little blister both times.) it's healing. He is super moody from it. I do not blame him. Bless his little pup heart. This eye issue has fully healed and has been gone for weeks and then like a switch is right back. He needs some healing vibes!!  Sleep is pretty crucial with Dysautonomia. It gives our nervous systems a chance to "reset" while sleeping!! I am also not tolerating my feeds today. Which is not helping my sleepless, worn out body. I did just get some juice in. My blood sugar must have been a bit low because I perked right up about 30 minutes later. (I used to struggle with fluids worse than solids... It's so strange how my body just flipped into letting me have some fluids by mouth. That is such a huge deal!! ) And I have some speciality foods by mouth. But my Gastroparesis is still very present. I do need formula and I have been struggling to get formula in. (Hoping my tube change next month will help that oddness.) You can tell. I've lost a tiny bit of weight. And I dip but I am trying!! Eating by mouth is fun and hard at times. I can not eat foods That I ate before tubes. So there are moments of getting used to new foods. Moments of trying to find nutrient enriched foods. Moments of craving crazy foods that previously I used to eat, like enchiladas? Um no! I would kill over for a week if I did that. Yet I have been craving those for two weeks now. Foods I haven't eaten in years!. And a lot of trial and error with food experiments going on right now. But I still have to take my nausea meds several times a day. And I made the mistake of eating an regular yogurt. I should have eaten a non fat yogurt. Well I definetly paid the price... See Gastroparesis, where fats and fibers technically are your enemy. They don't make us sick like an allergy. They slowly  digest. When your tummy is broke and can't process foods... If you put something in there that takes a lot of mushing (p.s. Tummy is paralyzed it's not gonna mush. However it will spasm like a maniac.) and slows things even more. You will in fact be in pain and vomit. It's the law of Gastroparesis. (Wink). I have blood work to be done today. Blood work seems to always come on an already difficult day. In POTS we have low blood volume. So taking blood out of this body is not the funest of tasks. I got a little extra sodium and water in me to help the process! But every two weeks because of POTS I go and get my electrolytes checked. I am on electrolyte replacements. So we have to keep an eye out for low potassium and Magnesium. We watch sodium, another electrolyte but it doesn't test low when low by blood. But since I replace such an abundace of sodium (24Grams) per day we want to keep an eye on it to make sure it is not too high. The first thing I did today was pray. I'm positive it's how I am functioning at all. Some days are entirely battles like today. A broken body is a broken body. I am simply thankful for my blessing in this life and the comfort of understanding the bigger picture of eternity. I might not understand it all in today's time but I truly believe all things happen for a reason. We are here to learn and grow. That's the task is to learn and grow while keeping hope for a better future. And to just keep trying. No matter how blind you feel to your future! Had to share my positives. No matter how little they may seem my little strides are big strides! 😊 -Chelle 
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