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.

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 

Thursday, September 7, 2017

Starting IVIG for POTS

Tomorrow I start IVIG therapy. I will infuse through my port for the next three days. I finally got my supplies in some form of order. You all know how I dislike unorganized medical supplies. Especially IV!!  And I dusted off old Ivy. She has been through thick and thin. The memories come flooding back. Poor thing had some formula on her still. I can't believe I got my feeding tube out a week to the day these infusions start. I haven't seen her in a while and her wheels show the miles we have traveled. However, She is nice and shiny clean now. (Now worries). Moving forwards! Hope and Faith this treatment works well and heals!  (Ivy just had to come along for the ride!) they sent me a new pole and I  said "No." It's just us -Chelle 

Friday, September 1, 2017

Because I have been given much, Texas.

Today I got my Feeding tube removed! I am SO blessed and at the very same appointment I met up with some of the kindest people alive to give them my extra feeding supplies to take to Texas. Which a truly blessed day, I will never forget! 
"Because I have been given much, I choose to give some more." Do what You can with what you have. Love everyone always. Count Your blessings daily. Remember who you are. And help when you can. The Lord is by our sides  working with us all together. Today's realization of tube fed individuals going hungry with no way to eat and no formula to eat shattered my heart. My biggest fear is to not have medical necessities. When I was fully tube fed I had ONE formula I could tolerate. And let me explain the home health pharmacies are down, the hospitals are down, (and hospitals aren't well equipped anyways. Most tubies bring their own supplies.), when I was on full tube feeding even f I fasted for a surgery (overnight) my blood sugar crashed critical. So dangerous. And my potassium tanked too. This is a window of some Tubie issues. They can't just eat anything. Can't go to the stores and bring them food. You can't hand them a gronola bar... And if you find something to give them you must have the supplies to use a feeding tube. If they were able to manage to hang onto their supplies, what conditions are they in where they are staying. So many risks and complications for them to face. Unfortunately, this week this has been the reality for many tube fed people. So other tubies are coming together and giving out extra stashes of supplies to them. Tubies have tubies backs always. If you want to help visit:
#tubielove. #prayersfortexas my heart and prayers are with you all -Chelle 

Monday, August 28, 2017

Starting NEW Treatments for POTS?

Well I didn't really have nutrition issues (GO ME!! 🙌) turned out I was/am in an autoimmune flare up. I have multiple autoimmune conditions. (Meaning my immune system attacks my body. Commonly known of autoimmune diseases would be, "Lupus" or "Rheumatoid Arthritis". Just to name a few for examples.) So, Dysautonomia International released in July that they were having good results with IVIG therapy in POTS patients that also had Sjögren's Syndrome. I have both... So Neurology cleared me and we are starting IVIG therapy. I am a candidate. Though we don't know if it will help The Dysautonomia... It has been sent through Home Heath and I will infuse through my port. Rheumatology felt this treatment will help ALL my autoimmune conditions across the board and make me feel better. (So ya gotta help something! Fingers crossed) There are no guarantees obviously but we have to try! For now the time being... since my Sjögren's seems so severe, they are putting me back on my old Immuno suppression pills, Imuran. They worked before and we only stoped them because some random lazy hospitalist didn't know what to do with me when I had unresolved fevers for over a month, with no conclusion as to why I fevered. (Rheumatologist was livid they never called him in while I was at his hospital and several more hospitals later for that matter. I simply was "crazy" yes they tried sticking me in a psych ward because I had fevers that didn't have answers. So we missed valuable testing time then and basically my doctors decided to see what happened with stopping my Immuno suppression and it's biting me in the butt now. (A year later) My body has had time to attack itself again.) During Rheumatology appointment I was complaining my lungs felt dry and found out my "medication side effects" (making me feel like I was suffocating.) is actually a symptom of Sjögren's. This is because my lungs are dry. Yes dry. I'm okay but it's not comfortable for sure. Luckily it varies up and down on severity. So I am back on those "poison pills" as I have always called them for now. Right as flu season hits. That makes me SO nervous. Because now I am medically fragile. My immune system is being wiped out so it doesn't attack my body but that also means I will get sick at the drop of the hat with any virus. I already get secondary infections from steroids that I use. To top that off any sort of bodily trauma especially a virus can set my Dysatuonomia off and make me severely worse. Even permanently. So please, I am begging if you are sick or have been around someone sick (contagious or possibly) no offense but STAY AWAY from me! It's serious. But I will choose faith. And just keep trying. (I have hopes the IVIG once started works well and then I can go off Immuno suppression medication. We will see.) I also had a lovely skin cancer removed last week that I never would have guessed! I went in for one thing and left with another (my luck) So get your skin checks even in your twenties because it actually does happen! Not just to medically interesting folks like me... And I am fortunate and blessed I went in and it was caught. Now I can keep an eye on things. It's melanoma related. But not a melanoma. And I am now high risk of developing melanoma in the future. It is called a complex nevus. But luckily I can keep an eye on things and just take good care of everything! That's my lovely health update. I have some exciting health improvement news I hope to share at the end of the week but I think I'll keep it a secret for today! One day at a time. Literally Lovies -Chelle 

Monday, August 14, 2017

Eating tips with Gastroparesis

I just wanted to share some eating with Gastroparesis tips. I just really stumbled upon and I think are super helpful for me today. Maybe someone else can use them 😊 (all out of the book "Living (Well!) with Gastroparesis" by, Crystal Zarborowski Salterlli CHC) I love her books! She is a nutritionist who has Gastroparesis herself. Seriously she taught me to eat again with GP.... Now I have noticed a huge decrease in function lately. I am tired all the time, Sleeping 12 plus hours per day, I'm peeing more, I know I am incredibly moody, I keep having spells of feeling in a funky spaced out world, and it's like my brain isn't even working. So of course my first thought, "Why & when did I feel this way last?" When I was struggling with anemia back in January or so. (When I was weening off formula). Well I have been studying up on my GP nutrition and diet. I have a lot of things I notice now that I need to work on. I'm doing well but as most with GP it's a constant battle to get a balanced diet. I'm not so sure I'm anemic but I think I am not getting my good fatty omegas in. Aka your fatty acids. We need them! Signs of deficiency according to my handy dandy GP book is " excessive thirst, frequent urination, dry hair, & skin." -pg 85. (I have recently developed every single one of these symptoms. I mean I've been whinning over being so thirsty. I'm so glad I popped this book out today.) and I don't eat any of the foods that have the Omegas in them. (So I've got to fix this). I am always hungry even when I am full. Even sickly full! (Well I knew this one but forgot). You absorb your nutrition in the small intestine. So if you have GP and you are Starving even when eating or after eating.... Have a little bit of fruit juice! It will absorb faster and seep down in to give your blood sugar a kick up and make your body quit signaling that it is starving. (While the other food is taking its own sweet time as we know sitting in that tummy not absorbing at a normal pace. Which is why the body tells you to eat is the food isn't going down and being absorbed. This leaves me hungry and full at the same time. Stinking belly!) I definitely am dipping low blood sugar despite eating regularly.  Funny before I got this book out last week, I was up all night eating junky foods. I was just hungry as a hippo. And I ate crap food because it was late and I didn't care to be honest. Quick and easy. We know the double edge sword with GP... junk foods are the easiest to digest but are empty calories. They don't offer nutrition. (I also thought, "my nutrition must be great I gained a few pounds the past two weeks." But that's probably all empty junky food calories. So weight gain isn't a good nutritional measure in this case... Also I said it in the past. I will say it again. Weight does not measure your nutrition!) I started having juice since I was incredibly thristy and I quit eating late at night. So it goes to show how tricky eating and living with GP really can be. It's a mind game. I thought I was so stressed but now that I am putting the puzzle together... I was and am actually struggling to get a good rounded diet with a paralyzed stomach and it's effecting my body. Some thing all Gastroparesis sufferers live with. Even when we can eat by mouth there are complications. (See we are all #starvingforacure it's not just a catch phrase.)  So I am not calorie counting or freaking out but I will be monitoring my daily intake of omegas, proteins, & I realized my formula had vitamin K and my Orgain doesn't have vitamin K (only  big nutritional difference between them.) I also do not eat greens because use I can not break them down. I also started last week setting alarms because as I tend to get side tracked or busy. I forget to eat. That could be from being tube fed for so long... Just something I never had to think of I hooked up to feeds once a day and that was I. So even still I am constantly learning to stop and eat. And I think the alarms will help my body get a proper schedule. So I will just work on these goals and see. I know living with Gastroparesis is work and confusing. I know how stressful eating with GP is! But my advice is to listen to your body. It will tell you when something is wrong. (Mine has really been telling me that something is off.) Then think it through. Then simply do the best you can and seek medical help If needed. That's what they are for! (That's where I was headed before my studies.) I do highly suggest this book! It's full of information  and explains not just GP itself...  but how to eat, what is good trial foods, recipes, & it explains the nutritional end. Which seriously no one had ever explained these things to me like this book. And I had been living with GP for years and thought I knew all there was to know. Go check her out!  It's been so helpful to me. And I loved being able to pull it out to check on a few things that I was suspicious of!  -Chelle