Friday, December 15, 2017
Not one but two donors are matching 150k this year in research. My heart needed that after this scary, frusterating, out of nowhere, flare up. That's the name of autonomic dysfunction. It is a constant battle and then some days it is down right terrifying! Praying I can keep pain levels lowered and mast cell issues can improve (all autonomic dysfunction). There have been some ups lately... Despite a big hospitalization, being in so much pain my body actually snapped and had to be sedated Multipule times... Many ER and a virus a.k.a a Dysautobomia disaster, Multipule doctor visits... An oh so much more. I managed to get an A in my class! Little victories to me are huge and I am proud! I could have easily quit so many times but Ipushed forwards instead in faith in God's plan.
Monday, November 27, 2017
Question: Did the IVIG infusions break my migraine cycle of over three weeks? Answer: YES! 🙌. I did get a headache for a little while but i have been the most headache free I've been in weeks. It was the only thing that stopped any of it. I have had a headache free day! Eek! Now I am not totally feeling fine. I am still really weak and my POTS is revved up. Standing puts my heart rate through the roof so I'm like running a marathon no matter what I do. But I am clearly doing much better. Now if we can just keep things going this way... Hopefully I will get back on my feet again and recover. I have to rebuild strength for sure. It takes me overnight it seems to loose months of hard work. Now my poor GI motility really needs to improve. Neurological Gastroparesis likes to change course with neurological condition that causes it. (Dysautonomia)... (Plus in it's defense I ate crap food for two weeks on those massive steroids. Never in my life have I had huger like that! I was starving and thinking of my next meal in the middle of a meal 😆! The girl who doesn't eat. Ate. My poor tummy deserves to be upset at me. After all it is paralyzed and I ate foods I can't digest for two weeks straight. It is very flared. Oh crazy steroid side effects!) hoping my poor tummy goes down and quits hurting so severely. I am on mushy liquid diet. Looks like a full liquid diet will be next. Just my update. I am so blessed and happy the IVIG clearly helped me. I don't know what this exactly means... But it means I have some form of a treatment that is not just masking symptoms... It is treating something that's wrong in my body. I have always felt like my immune system just runs rapid and starts attacking me. Since day one ten years ago basically I've said this. And here we are finding my cases could very well be caused my autoimmunity. Who would have thunk! The cool thing is IVIG builds the immune system up instead of pulling it down. Makin me stronger not weaker. Heal little body heal! Lots of love. Never loose hope & though you have faith may you believe in Heavenly Father's plan for you. May you realize the lessons in the journeys and find joy along the way. Even in the trenches there is peace and joy. Sometimes you have to look a lot harder than others. Have faith in God's plan -Chelle
Saturday, November 25, 2017
Wednesday, November 22, 2017
Well I finally put some makeup on and did my hair... Who is this girl with the hair did and the makeup done? (It's a thanksgiving eve miracle.)
Still having migraines. The only thing that helps is Caffeine... At this point any sort of break is worth it. I feel like I've been gone and wow three weeks have passed!? How is it the END of November already? It is a strange feeling. The past few weeks are a blur to me. I am definitely feeling impatient. I just want my life back. And I keep thinking "how did this happen? I was fine and then I came home from physical therapy a totally different person." I've been stuck not just in bed but I've had to literally be babysat. Sunday night I actually started getting worse. My joints are literally locking up and I have to hobble around. (Or have help) My muscles keep spasming up as week. Like severe full body spasms. having severe mast cell issues that are common in POTS patients. I think I am having a lot of auto immune issues... (That's my personal opinion is my body is enjoying attacking itself. I don't know what's up with the non-stop month long migraine. And patients like me don't typically get answers to these crappy situations. It is not POTS but it is bringing my POTS all over the map.) I have IVIG the day after Thanksgiving and the day after that. (Two day infusion) we are really praying it helps. Here is a link on Dysautonomia and patients that fit IVIG criteria, like me.https://vimeo.com/243160944 neurologist has lots of hopes for me and this IVIG... My body seems to just be angry all over the place. I am coming off the steroids.(they didn't work for the migraine but they did really make me eat. I tell you forget motility medications with gastroparesis and try Decadron. Lol never have I eaten so much in my life. My little tummy is angry but the steroids made my brain not care. It was insane truly!) But I will have to go back on them for a few days during the IVIG infusions. I feel like today has been the best day I've had in a while... so far but I honestly don't want to get my hopes up. One day at a time for sure. Story time: Before I saw my neurologist last week . I said a prayer in the car. I was very defeated and afraid. I got into the office and sat down. I immediately heard the song "The Climb" by Miley Cyrus. I knew it was the answer to my prayers. I know God keeps his promises and I know I can get well again. I just have to climb another mountain. There must be more to learn. My Mom got me a bracelet that says "believe" with an angel wing and a Pearl.. She says it has granddad and grandma's love. (I was so drugged in the hospital and upset that when she put it on me, I decided she had handcuffed me 😂 which is hilarious. And I didn't even say anything about that to her... I just thought it apparently. I have no clue why I ever have thought that! I just remembered it hahah.) but back to my story... When I was sitting in the neurology waiting room the song played and I knew God was talking straight to me. And for some reason all I could do was stare at this bracelet. It was a bitter sweet moment I will never forget. Sometimes when we are the most defeated and heartbroken we are capable of learning and listening the most to God. And I know I had angels around me in that moment. I am so thankful for my family and friends in my life and I am so blessed. I am facing a big challenge but just know it will all work out. I an impatient and I just want to be normal again. Even my partial normal I miss... I can easily say I miss standing the most. What a blessing it is to be able to easily stand up without nearly passing out or feeling like you are running a marathon. Just remember we are SO much more then our bodies. We all have a lot to offer this world. Just keep trying too. Don't ever quit on yourself because we don't know what is just around the corner! God told me I'd be better not cured. He told me I'd function again. So I will. He also recently told me the next few months were going to be super challenging but to hang in there and it would be okay again. So it will. It's that simple. Happy Thanksgiving -Chelle
Thursday, November 16, 2017
To be contended...
(really how does one do that wrong) My mom ran to the car during this. Praying for answers they can mine this Body back seen so I can heal or have peace of mind. (Only I get the craziest of medical happened to me . When I get sick. I get dropped. Ended up being sent home Brain MRI and Head were normal. They decided no lumbar puncture. See specialty neuro tomorrow. Sick girl really needs prayers for help -Chelle
Wednesday, November 15, 2017
Saturday, November 11, 2017
There is not much to update. But I didn't want to leave everyone hanging. We did get the blood pressure down for the most part it seems today via medication. (That is a releif.) but everything else remains the same. Taking it one day at a time. Hopefully next week will entail more. Doctors have been out of touch and out of offices. Lots of medical changes on their ends. I even have been told to go to the Valley to try a big ER but I do not see the point. They can only do so much. They have protocols and tied hands as physicians as well. My established medical team needs to help me and they have not. I have been down that road of checking myself to Big ERs and it didn't get me a thing but heart ache. So off personal experiences, I am staying home and doing the best I can. I would obviously go to an ER if needed. I went three times last week. And they did try their best I believe to help me. They have helped me more then anyone. (how backwards for me. lol.) It's just so complex and weird. I don't know what to think nor to expect. If something is wrong hopefully they can figure it out and if they missed a window of opportunity to test then I also don't know. Neurology thinks I may have injured my neck or something is wrong with my brain possibly. This whole thing started with physical therapy. The severely high blood pressure I have no clue about... All I know is God keeps his promises & I now will take it a day at a time. It's been a long stressful, frightening week and a half. Thanks for all the support and prayers it keeps me going! ❤️ -Chelle