Friday, December 15, 2017

Dysautonomia Life Dec. 2017

I just saw my neurologist today. It has been confirmed my scary high blood pressure was from the massive pain I was in. The pain was in fact a Dysatuonomia flare. This disease is so hideous and mean! Good news is my blood pressure is slightly low and I can start the process of weening off the medication to lower the blood pressure. I also get to go back on fludrocortizone a big treatment for my POTS. This week has been mentally rough for me. Last week they took me off a migraine preventative medication. I had literally every single side effect. It was literally giving me symptoms of Parkinson's disease and that was not fun.  It was holding me down. Neuro also didn't have a "No" response to seizure episodes. They could be seizures... But we simply don't know right now. So this week has been slow and steady attempts to rebuild my health again. My tummy is not being so well. I have vomited several times this week, including some lunch today hiding in the car at the neurologist's office parking lot. Hoping nobody noticed. I haven't done that in well over a years time. Which makes me nervous obviously. The migraine medication was an appetite stimulant. I was afraid once I came off of it after being in a big dysautonomia flare my neurological gastroparesis would be worse. But we seem to be looking up. So hoping tummy gets better too with some time. My IVIG Gamaplexin is on nation Backorder. So all across the country are having to switch. If insurance complies I will have my scheduled IVIG infusions before Christmas (praying they do not make me sick. The last time I had infusions, they made me better and broke my cycle of misery... BUT changing brands can cause some issues.) I have been so frusterated with my body. Last night I prayed and then I opened Facebook to find this, 
 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. 
.... One day at a time -Chelle

Monday, November 27, 2017

Did IVIG help?

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

IVIG- POTS Autoimmune

Wearing the good old "Bless this Mess" sweat shirt. It may be old but it is going to be worn until it can't be worn anymore lol. Sentimental and very fitting? Yes. 
Today is the last infusion of IVIG. I normally don't feel good and it is rough. But I've been so sick lately it's a good day. I think it definetly is helping. My head still hurts. But it doesn't seem to hurt for a little while in the mornings. (Which I will take.) and then it helps to have caffeine but that's being rough on my tummy. I am now not sleeping so hopefully they can help me with that. Rest is crucial. I got to do very light cardio yesterday for 15minutes after IVIG. I think that's an amazing sign. I couldn't even walk to the bathroom last week. My heart rate is high lately so POTS is very revved up right now. My joints aren't kicking up as severely now. I think the muscle spams were linked from the Decadron... Because I have to take Decadron with this IVIG for side effects and that has restarted. Mast cell rash is finally going away after weeks. So if anything the IVIG is helping my mast cell issues! Win! Though I am so far from being well right now. Life has very much 360d this past month and not only have I scared the crap out of my family. I have scared the crap out of myself this whole situation by far has been the biggest fright ever. (For all of us.) I have been very blessed through this and I just know without a doubt things will get better again and this too shall pass. I don't know that timeline. But I know God keeps his promises. I have 3 more months to see if this works for me. It doesn't kick in really for 6 months. But I do feel it made a difference yesterday. My body just feels better all over. Prayers and love to all -Chelle 

Wednesday, November 22, 2017

Thanksgiving Eve

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

Update Thursday Morning

To be contended...
Well this medical world has kicked my butt thoroughly. Yesterday some communication error occurred. My neurologist is working with another through the hospital I am at. He doesn't come in himself but had colleagues that do. They admitted Tuesday night. Very high Red Blood Cell Counts with possible CFS leak. My body went into full body spams that night. They sedated it was so severe. Next day.. . First thing yesterday morning they did full spine MRI. And then put me NO food or drink. NO IV fluids. ..(because they may have needed to do procedural testing. Still should have had IV  fluids.)  I sat in my room all day. Having strange episodes and massive pain. No doctor help... Scary. Long. Day. Every one was waiting for my neurologist and they couldn't get him. They also started informing me I was last night I going to be sent home because my Neuro was not coming in. (I want to go home but I want medical help that I think truly I need at this point.) so the ball for dropped leaving me with well an spine MRI and misery.  Later after my mom got ahold of my neurologist via the hospital... yesterday night my neurologist sent two Neurologist that work here for me. They immediately came in my room and did work up. And nerve blocks to releif pain. It helped a lot. And gave my tummy chance to not be beaten up on nasty pain med. up all night with very  angry belly (Gastroparesis and pain meds don't mix...!) Today woke up feeling less pain but as time goes on block is wearing down. Just had Brain MRI and it made my head hurt again. Waiting for results. So neurologists are trying to come up with a plan/migraine cocktail. Issue is I have too many side effects. Now we forge on to get pain in control. Also have gotten dehydrated from yesterday. Go team IV fluids. The second my head had releif (releif still not gone.) my poor tummy had me sick all night. Hopefully.. Hoping to get pain in Control so I can shower and braid my hair... The little things folks. Part two = Well that did not happen. I went into Cyclic womit. Scared the nurses (all) and they very very scared. However I could not communicate physically like that. And she wanted to shove polls down me.. You can't take pills and chanve tossing them...!) And I couldn't explain or talk that it is my paralyze.)
(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

Hospital Admittance Possible CFS Leak

Yesterday Neurologist did an admit through ER at Banner U. In PHX. They were thinking Possible brain bleed tear. Thinking injury from neck. I have been SO sick and stuck in the middle of everything. Once they got me in last night did an work up, Neuro came and saw me... My red Blood Cell count is through the roof. Going to have to fix that. Possible reaction from all the steroids. They automatically hospitalized me. Neurologist/hospitalist  that worked with me through the night treated me the best compassionate care. He thinks CFS leak is big possibility. That's where we are going to look for today. (Then go from there.) I ended up with full body severe muscle spasms. It was AWFUL my whole spine locked up. They had to really intervene medically to get the screaming to stop. My body is snapping from being in SO much pain. POTS is kicking in as well and just standing is running a marathon. I can't catch my breathe now with standing up or walking steps. Keep you posted on the crazy journey. Prayers for healing and help. I've been flooded by angels on both sides of the veil. Especially last night. I don't remember being roomed last night really. I just know I went to go to the bathroom and my bed just woke up the whole hallway... Oops. Ok not allowed to get up on my own (haha thought I was going to go to jail 😉😉). Prayers for healing, answers, & hope  I don't like this scary spine stuff! Lots of love -Chelle 

Saturday, November 11, 2017

Update Nov. 2017 BP Saga.

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