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 

Wednesday, November 8, 2017

Update

Still need prayers. I promised an update. After 3 ER visits last week, seeing PCP, contacting neurology this week
I've been having very high blood pressure, my heart rate was tanking to the 30s &40s, my oxygen was tanking with it, (I think that's stopped), I have severe* migraine, dizziness, fatigue, chest pain... Not good... (This is NOT my POTS, POTS makes blood pressure low and heart rate high. And I've never had this happen...)
Still very high blood pressure and migraines. (Blood pressure gets worse then this even at times and has yet to go down minus Saturday after neck injections for migraine releif.)
Despite removing my medication that could have been raising my blood pressure... It remains elevated the same. Neurologist is now concerned, it has been one week. Now we have to do something to Lower it for safety... He is giving me something to lower blood pressure now. But It has to be super tediously done because I have POTS. (We don't want to cause more problems then we already have.) We are doing an MRI of the brain too because at this point something could be wrong and it needs to be checked. I should not be having these migraines. Literally. And the very high doses of steroids should have made them go away by now. (They have made my stomach oh so sick.) prayers for healing and safe keeping appreciated. I did get a preisthood blessing and it's been the only thing of releif truly. So blessed to have gotten it! Just need this body to stop and behave itself. Love always -Chelle 

Tuesday, November 7, 2017

Prayers please

I've gone to write this post a million times this weekend. Basically I'm really sick. I had three ER visits this past weekend. My blood pressure is way too high. (Scary levels) My heart rate and oxygen were randomly dropping. Doctors were out of office. Migraine issues. Severe. I'll fill in the details later as we are at a loss. Asking for prayers because we know that's what works best! Neurologist got back today. We spoke on the phone. It's bad I won't lie. Hopefully we can fix this and get to the bottom of things. (Without too much bodily malfunction.) I've been SO blessed with good caregivers this weekend. Prayers for normal Blood pressure tomorrow. Will update again when I know more. Dysautonomia is mean but if I find any more glitter around me! Lol. My angels are watching out for me and sending me signs. -Chelle  

Friday, October 20, 2017

Dysautonomia Reality. Awareness. IVIG

Since Dysautonomia is literally kicking my butt. Again. I thought I'd take the opportunity to show my new treatments IVIG, this is new for POTS. It's truly the closest thing to actually treatment I have. However no answers are clear as to why... I have autoimmune issues and now mast cell issues... Which came first the chicken (POTS), or the egg (immune issues). We don't know the link. We just know there is one.... And it's rough. It hasn't been an easy decision for me to make. But the fight must go on... This is what my days have been filled with for two days... Dysautonomia awareness #1: Harsh Steroids for side effect taken with a glass of milk & now to drink lots of water (just to combat side effects of the next two days) Check. Dysautonomia awareness #2 take another handful of daily morning medication & Tylenol (to combat side effects of treatment) Dysatuonomia Awarness #3 access port. Dysautonomia #3 Infuse IV benedryl and a Bag of fluids. (To combat side effects of treatments.) Dysautonomia Awareness #4 finally infuse IVIG for hours, pray for healing, & no side effects. Dysautonomia Awareness #5 rest, eat, at hour 6 the side effects will kick in the worst for me. Dysautonomia Awareness #7 much more fluids and more benedryl and Tylenol. Dysautonomia Awareness #8 A handful of pills nightly, with an extra harsh steroid to combat side effects of the day. More water. Dysatuonomia awareness #9 staying up all night to run a 500 ml bag of dextrose Saine by gravity (no sleeping when running an IV by yourself via gravity... You might bleed out. And we all know I don't got time for that. Plus I have POTS my blood doesn't resupply well.)
next day.... Dysautonomia awarness #1wake up early run another bag of saline. Predose with benedryl, harsh steroids, and Tylenol. Dysautonomia Awarness #2 take a handful of morning medications. Dysautonomia awareness #3 sleep. (Because I was up all night running IVs.)  Dysautonomia awareness #4 beep! Pump alarm... Hey I'm finished! wake up, deaccess port. Dysautonomia Awarness #5 moon face. (I am pretty sure tonight I have gained ten pounds of water weight.) Side effect of steroids. The day went very well. I even got dressed and left the house. But just when you need a sticky note, one appears... #faith. I had a good ending to a rough treatment. Side effects still continue but I think I am okay. Never give up hope, trust, & believe in good things to come! Go climb that mountain. Love you all -Chelle 

Saturday, October 14, 2017

New Day

And just like that prayers, nights rest, & some hope.... I found a glitter fleck right over my heart multiple times last week, I wanted to ignore them... Did that mean I was sicker than I wanted to be? Yep, I was trying to convince myself I was not feeling sick. I was up late with severe tachycardia. It is really hard to sleep when you can't breathe. And of your body thinks it is running (because it is) when you are laying in bed trying to sleep... You're going to feel confused and bad. I had severe chest pains yesterday. It's not anxiety. It is a legit physical symptom of POTS/Dysautonomia. And then the glitter made sense... My heart is physically hurting and working wrong. It's being told to beat too fast, my Blood pressure is high, it hurts. That's my Angel little way of giving me that warning "it's okay" for when that worry and panic sets in. And it did set in but I had blessings and Heavely help, from angels above and angels on earth. I woke up feeling like a fighter today. (After receiving much needed catch up rest.) I am running a breathing treatment in hopes to kick out some mast cells, or calm them. Which in turn will calm my nervous system hyperactivity and dysfunction. But lay my be feasible. I don't feel well but I feel ready. I feel happy. I thought maybe I was done blogging my life. Maybe that's not in my plans... (Healthy or not) I feel like my Heavenly Father is showing me the way through this trial. Maybe I have more work to do? #littlegirlwithgreatbigplans (Maybe more details on that later. Stay tuned.)  and don't give up on you, hope, or faith! Xoxo -Chelle