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 

Friday, October 13, 2017

Today.

These past few months have been challenging. I have declined in my health. I've tried hiding it more for my personal sake. My heart doesn't hurt because I'm sad it hurts physically. I feel like it could explode. My blood pressure has gone from low to high, my nervous system is not doing very well.  I'm continuing to fight this horrible condition daily, with all I have. To the pint I've done all I can for now. The long days of foggy brain, fatigue, and unimaginable pain can be quickly defeating. Right now my heart rate is very high and I feel like passing out. I don't even want to go into detail because I have with so many doctors this week my head spins. There is too much wrong and I don't have the energy right now. I have so many medical treatments and tasks I find myself overwhelmed. The IVIG therapy will take six months to see if it works. I am on an very high dose of this along with an imunno suppressant therapy medication. These treatments are not easy. Though, Rheumatology is not working with me... I have made demands and other doctors are working with me. Neurology is over the IVIG for neurological and immunology purposes. Today I showed clear signs that my body is not over producing but not distributing mast cells properly. (This is common in POTS and is a result of my Auntonomoc Nervous System Malfunction. #Dysautonomia.) So we hope the IVIG helps. We also will start treatment of allergy medications to help this situation. The issue is there are too many situations. These situations are causing my Autonomic Nervous System to tail spin and we can't seem to get it to stop. It's a vicious circle. The hard part, we have no answers just tid bits of dysfunction. All I can do is my best to stay strong and continue fighting to put the fires out as they come. Keeping this body at peace is essential to best control of Dysautonomia.  I have a team of specialists but some are slacking and wanting out because I'm quote "too sick" (This brings me to a cheer analogy; when you do a cheer stunt with your teammates, there are a basic 5 positions; the back spot, two bases, the front spot, & the flyer.... If for some reason one of those teammates aren't there, you can't throw the stunt. You can't keep the stunt up in the air (Yes, I am aware that front spots aren't always necessary and that there are several ways to put up stunts. But just back to basics.... That's what's happening to my medical team. I have had one of my teammates leave with no replacement. This leaves the others working harder to try to keep the stunt up but it's all just crashing down. My health is just not able to thrive if I don't have all my teammates holding me up. Until replacements are made.) I have a hole in my belly and that specialist carelessly has decided it can just stay that way. Despite being an infection risk and I'm not having a hole in my abdomen forever. That is rediculous. (Ask any medical professional. My other doctors are livid, as am I.) other specialist have literally slacked on labwork that's been essential. My heart is heavy because the reality is this new sick can be my new normal & it can get worse.(Here is your Dysautonomia awareness. It's nasty. It's mean. It makes no sense. It is scary. It hurts in every way. It will make you cry in your car when you are so tired of the pain and you've done everything. It will make you crazy trying to figure it out or figure out what to do... And I don't have any answers right now. Dysautonomia is still a mystery. A mystery that's effecting everything in my body you wouldn't even know existed. That's my reality.)
 -this has been MY reality for ten years now. But I have faith in what My Heavenly Father told me and I know what he promised me. I also know in my preisthood blessing I was told that the next while would be tough but that it will be okay again in due time. Though right now that's hard to see... I just have to rely on my faith today. Faith defeats fear -Chelle