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 

Wednesday, September 27, 2017

HANGRY GP update

So I decided to do a Gastroparesis science experiment of sorts on myself today.... Since my stomach wasn't digesting food properly. Making me starve as a result. (You see you absorb in the small intestine, not the stomach.) so when the stomach is paralyzed and holding your food hostage... You're not getting food. (Womp womp) So I did a test. This morning I had liquid nutrition. (Full liquid diet.) My meal replacements drinks are brand Orgain. Easy to break down, equals faster digestion/absorption. My starvation went away completely. Glory glory hallelujah! For dinner I ate real food... And I did not get full at all... Just a big belly ache. So I have to change my diet to easy to break down foods. Gastric paralyzation is so annoying! Even when you can eat you end up on liquid diets because you can not digest and absorb nutrients out of food. That's just the way it is. But I take a deep breath and remember that at least I am eating by mouth. That's a major blessing and I don't forget it. So if you are starving from GP... Go to full liquids when you are Hangry and eating with no releif. Sincerely your favorite science project -Chelle 

Tuesday, September 26, 2017

HANGRY (Gastroparesis many meanings)

Most Gatsroparesis sufferers don't go through all these phases/spectrums I have. (Like tube fed, back to eating by mouth, ect.) I've been all over the map. That being said. Tonight I am HANGRY. I am so tired of feeling hungry all of the time! My food is being held hostage by my stomach and there is nothing I can do about it. Now that my stomach is holding food hostage, it's not being absorbed, and my brain is telling me "eat". #starvingforacure takes so many meanings with this disease. I almost starved to death by the day. I've been skin and bones. Back to healthy BMI. And I have periods of time where two bites is just too much to eat. Then I have periods of time like lately where all I want to do is eat. And I eat fairly well considering my condition. But that's the kicker when I sit down and eat a meal, I don't leave the table feeling any different then when I sat down. (Minus the added belly ache). It's a can't win situation. All I can do is roll with the punches. Idk why I am writing this I guess I just think starving is rediculous and that's what people like me with Gastroparesis do one way or another, we starve... This isn't a complaint rant post. This is an awareness post. Because if the 4% of Gastroparesis patients never talk about these things... No one would ever know.                         On an unrelated note. I know all these new treatments I have just started will be hard for a time. Heavenly Father has reinterated that to me a lot lately. But I really think after the next few months or so things will be better again. I know I will be okay in a while. Hopefully even better!  For now I just focus on doing what I can to become stronger. And It will be hard for a time but I know with the Savior by my side as always. I have faith I will get through, and I'll be better for it. It's the fighter in me, I can't help it. I know in my soul that God has a plan and that plan keeps going as Heavenly Father has promised me with time passing. Keep hoping, keep pushing, hold your head up strong, when you get knocked down... "Brush yourself off and get back up again" (that's what my Mom always told us growing up.) Keep His promises in your heart. -Chelle 

Thursday, September 21, 2017

IVIG/updates for the week.

I finished out the loading dose of IVIG. The whole whopping 90g. (That's a lot for a little girl.) It went well. I  did have side effects but I could deal with them. Mostly headache/migraine and flu like symptoms. My Small Fiber  Neuropathy is worse. I do not know if that's related or not.  Now to work out the strong steroid out of my little system. We will see in about a 4-6 month time frame what this is doing for me or if it works. I found out Tuesday I get to go get some ring splints and wrists splints made. That is for the Elhers Danlos Syndrome. I am hyper extending my joints in my hand, fingers, and wrists. So we are mobilizing them at night... to prevent further damage and preserve what we can. Hopefully it will shorten some of the hyper-extension too over time. I asked if it could be the reason behind my horrific hand writing decline and he did think it could be... Since their isn't stabilization. So I am a little curious to see if the splints help my writing. Plus writing is painful. I don't have my hopes up that splinting will fix it. It is odd but hand writing is important to me and it's been a struggle years. He said surgery was an option for hyper extension of the tendons. (But I am not ready for that. Uh no thanks. He thinks down the road it may have to happen one day but he agreed for now I am okay.) I have had a rough week overall. I think I have some secondary infections from the strong steroids. I have had a lot of headaches. (By part of me knows it's allergy season and that can cause some of these things.) my nose bleeds every night at bedtime now. It's the darnest thing! I also just started a GP flare up again. I have got to quit thinking "it will be okay" with food. Nope. It's not okay! Sometimes I feel invincible when it comes to eating and it is a learning curve of "just don't." Once in a while I tell myself, "I won't  get sick if I have a little." We are now on a full liquid diet now. The what I call, "gingerale powerade slush diet". Lesson learned GP. Lesson learned.
-Chelle 

Sunday, September 17, 2017

Finishing IVIG Starter dose? Or Not?

I spoke with neurology and He decided A. They pharmacy messed up my orders and did not predose Benedryl or Tylenol for side effects. B. The pharmacy messed up my orders and did not run IV fluids prior* to IVIG dose. (They dispensed it "as needed"). Those are biggies. C. My migraine medication did not work when used. That's never happened. So I need a big steroid during infusions to mask those more. D. The dose was too much at one time for my body. 90mg in three days. I did not tolerate that rate. E. Luckily my Nurse ran my IVIG doses over a 5 hour period or it could have been catastrophic. My Neurologist was upset his orders were not followed properly. It sent me into a tail spin. I started feeling better daily but Friday I finally felt human and then that night I had to predose steroid for the end of the week. We splint the final dose in half and ran it half yesterday, half today with the right instructions this time for hopefully avoiding these regular bit harsh side effects for me. It's going to take patience and time to line these out. It's a ginuea pig approach of finding what works for your body. I did well yesterday. I did get body aches, hot flashes, and a migraine about 6 hours post infusing. I am in a GP flare up but I can't blame the IVIG that could just be my body... But not severe and I chugged a water bottle and went to sleep. Fluids I can tell make a big difference while having IVIG. I drank way more then twice my daily limit... But it's one or two days a month we think we can handle it. Hopefully today goes well and after infusions go well! Prayers! I missed church the past two weeks now for infusions since my nurse comes out of town four hours each way. And I have to have this nurse with me the whole time I infuse IVIG. In the future it seems like the plan should be on Fridays and praying we can get that dose smashed into ONE days time. I thought I'd post an update before I forget. I want this IVIG to be a little mapped out for other POTS patients looking into using this newer treatment avenue. (IVIG has been around for 30ish years and is not new. But using in POTS with specifically patients with Sjögren's syndrome dx. Or autoimmunity is new.) love to all! 💕happy sabbath!  xo-Chelle 

Monday, September 11, 2017

IVIG starter dose POTS

Holy guacamole! IVIG starter dose update: So the second round of IVIG Starter dose had a delayed response to side effects. I had the worst migraine of my life along with POTS and the flu like symptoms. My home health nurse is amazing and came to my aid to try to counter react it. And neuro did step in. We did not do the last dose of the starter dose. I am waiting to hear back from doctors but nurse thinks we should be able  to continue since I did well the first day and that's the dose from here on out. Also they should have pre treated me for migraines since I suffer from chronic migraines and it's the most common side effects. It was rough. Today is better but still not well. One day at a time- Chelle