Friday, December 15, 2017
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.
Monday, November 27, 2017
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
Wednesday, November 22, 2017
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
To be contended...
(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
Saturday, November 11, 2017
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
Still need prayers. I promised an update. After 3 ER visits last week, seeing PCP, contacting neurology this week
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.)
Tuesday, November 7, 2017
Friday, October 20, 2017
Saturday, October 14, 2017
Friday, October 13, 2017
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.)
Wednesday, September 27, 2017
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
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
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
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
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
Friday, September 1, 2017
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: http://www.theparkerleeproject.org/
Monday, August 28, 2017
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
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!http://livingwithgastroparesis.com/ 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
Thursday, July 27, 2017
https://youtu.be/sM27ewIDtnI I have literally almost lost my own life to this disease. And I have lost too many friends. Their docs didn't get them a tube in time. Their bodies quit absorbing nutrients. They got severely dehydrated and passed in their sleep. Unexpectedly. All too soon and too young. (And continue to do so regularly.) this is fatal. And I'm sick of the misconceptions! So, I'm breaking them and speaking out. August is Gastroparesis Awareness Month. I'm sure I'll be sharing info and awareness so keep your eyes out! Just because I am handling my condition well today doesn't mean I've stoped fighting!
Wednesday, July 26, 2017
If anything this year I have learned that I am in fact tough. I have come so far and I am so blessed! And I am continuing to seek new treatment options. We think my Sjögren's Syndrome is a new culprit. (We let it get the upper hand when we stopped immuno suppressant therapy last year. Now it's showing back up it seems.) I'm ready to fight some more. I'll keep you posted.
Wednesday, July 19, 2017
Tonight at church during game night that I am not too talented at 😉 anyone who knows me.... will know, I danced but don't expect me to do other sports for I lack the skill set needed. Between that and my health I chose to sit it out. Meanwhile someone needed instructions to the restroom. I told them "I will show you." So we go and I showed them. (I wasn't going to be a bathroom stalker. So of course, I waited down the hallway.) Meanwhile I found myself in the exact spot standing in front of a beautiful picture of Christ. It was the picture of Christ Healing the Woman that touched him. Who had been sick for 12 years. She was a younge adult female. Like me. I teared up a bit knowing that My Heavenly Father was indeed speaking to me. It was no coincidence. I do have faith and I know I can't be healed all at once. He has told me that's not part of my plan. It will take time and effort. It's bound to be a bit bumpy. But I know that message so clearly. And I know God is healing me from the inside out. I know Jesus Christ is My Savior and Redmeemer. I know He hears me. He always answers in those still, yet subtle ways. He knows my heart. He knows my pains and sorrows. He knows my losses. He knows my gains. He knows me better then me! He is showing me that I am waking down My right path. Looking at that picture I felt me walking down a trail alone. Then him walking up to me and grabbing me around the shoulders. Then leading me side by side we both will walk together down the path. And We are. He is My Savior and I love him -Chelle https://www.lds.org/media-library/video/2011-10-031-jesus-heals-a-woman-of-faith?lang=eng
Monday, July 17, 2017
Monday, July 10, 2017
Thursday, July 6, 2017
Thursday, June 29, 2017
I also took a simple luxury and bought sunglasses and some makeup. I made myself use up some of my 'ten year supply' of makeup and I haven't bought any makeup minus, foundation and mascara since last fall! (Yes I am proud of myself... That's hard to do for a Makeup Geek.) I am a proud makeup hoarder (as You probably already knew.) However, it was time to clean out the drawers of makeup and use some of it. (Mostly so I could make room for more right 😉😉) Maybe I'll find a new look since I've been on the same three smokey eyes for a year now. A little inspiration. I mean I used to have a new look every week... Haha. I have reserved my makeup skills due to tremors in my hands and weaknesses. What was therapeutic became frusterating. In what felt like overnight. Unsteady hands do make makeup applying harder. But as I have with everything else in life... I won't let disease take that away from Me... I won't let some slight wobbles of eyeliner get in the way of life! (Isn't that what q-tips And "fixing it"is for 😉) I simply just enjoyed My day today and I felt like Chelle again 🙌 (not the old Me... As in before sick... I don't need to be her. Just the regular Me I have become.) Today however, not some incredibly tired aching zombie person I've been for a week. I also woke up at 9am this morning!! That's a victory to my broken sleep schedule! Overall, I had a great day. I wore sunglasses in my house 😂 I loved on My doggie... I was a goofball. I was happy.
Wednesday, June 28, 2017
I'm simply physically tired. The heat is just too exhausting. I mean SO tired I let myself take a nap yeaterday. (You all know I don't let myself nap due to insomnia.) I have seen my pelvis specialist and Endometriosis is finally moving in the right direction. (Took a u-turn by accident post surgery last year.) after altering treatments we are in high hopes we finally are moving forwards though I have a long ways to go. My doctor is amazing and is working hard with Me. Endometriosis is no reason to live in pain. And that's the type of Doctor you should have! Also She doesn't think o have a hernia. My belly is now weakened from too much cutting and that's my pain and weird belly button soreness. (I've had 4 surgeries through that area.) I also had my nerve conduction study on My hand/arm. So, we will see what that brings. If no info we will keep searching. There are reasons. (It could be elhers danlos syndrome. With inflammation I am feeling, I wonder if it's autoimmunity striking up.) I have had a ton of inflammation and pain all over so again, I know something is going on and I just need rheumatology to figure it out. I do have autoimmunity. I have multiple autoimmune diseases... The biggest hang up is... I have been diagnosed with Sjogren's and undiagnosed. My last Rheumatologist left it at he couldn't say "no I don't have it" nor "yes I do"... Come back in a year. So I am going to ask my kidney doctor to help me as she sent me before to an amazing one who was known for dealing with complexity bit the move happened. I need to know definetly because they have just released to all POTS patients that we should if suspiciously are undetermined diagnosis of Sjögren's syndrome we must determine if I have Sjögren's syndrome (I can start IVIG treatments and it should be successful in treating sjogrens and my Dysautonomia.) they also really are starting to find information pointing that Dysautonomia is an autoimmune disease. (Which for me makes sense.) I also am still deconditioned. So I will be in the nearer future picking that apart and entering even more complex physical therapy (I don't think it ever ends, physical therapy.) I am sure this post seems like a downer in comparison to the others. I am still doing so well. I am SO very blessed. I mean I am eating folks! Those mountains I have climbed this year... They were still tackled. I did go to the top... but now it's time to keep moving forwards and keep climbing the rest of those mountains left. Because I do still have a ton of conditions that are contradicting each other. I am still medically fragile and I am physically weak even with my great progresses. So we will start tweaking care again. I just have to get through July and August (mostly July with the heat intolerance.) Due to heat intolerance physical therapy out of town has been paused. (Since it's so severely hot where I attend my treatments.) We all feel it's necessary to avoid the heat. I have to take care of my whole body as a packaged deal. I can not regulate my temperature so heat is horrific to my condition overall. So we will break and restart probably very hard in the fall. That's my update. From the few days of medical evals. After all, "mighty change is mighty hard"- Neal A. Maxwell. Though I am so fatigued and hurting. After a trip home I still got my cardio in because I know how important it is for my body.
Tuesday, June 20, 2017
G tube life here we go! Would You call this The secret life of the American Tubie? Gastroparesis Warrior mode on ✔️ Love -Chelle
Thursday, June 15, 2017
Today I feel like a whole new person! I feel full of life. Today was freeing after being so trapped in the house. I'm happy! I'm blessed!
This photo popped up on my memories today... One year ago my feeding tube broke and fell out. It was a crazy time. (The actual story is pretty funny you'll have to go look back to last year and read it😉) I had spent weeks with my GI explaining something was wrong. I couldn't feed without becoming very ill. I was tasting all my medications that I shouldn't have been but it was going into my paralyzed stomach. I ended up having a hole in My feeding tube so it really was feeding into my stomach. Which was avoiding the whole point of my Jejunal feeding tube. My GI felt horrible about it, He had been very busy and didn't stop and listen to my issues. They all pointed to the issue at hand. Due to that I was not able to eat all that time. I then had to have a full surgery to recut my stoma and replace my feeding tube. I ended up getting refeeding syndrome. Meaning I had to start my feeding rate from scratch all over again. I could only feed maybe 10ml per hour at a time. I was malnourished. It took Me down the whole summer. I battled hard to have my nutrition. The second I regained enough to be in the safe zone, I caught some flu like virus. (In the middle of summer) my neurologist panicked with concern. I will never forget him calling me. I then got over that with a week to spare before going into surgery. (I went back and forth on actually going through with the surgery.) but I prayed and I was told "to prepare." I mean I had been praying for what, 9 years? For healing and one night I was told to "prepare. I would not be healed fully but I would function again." And just like that I slowly regained the ability to eat and drink. I was able to better control my diseases. It was definite divine intervention. God was in fact healing me. The world threw me nothing but ways to become sicker and my body was in fact healing. My mysterious disease was back tracking. My crew of doctors were all stumped but of course we were happy. We all held hope but were nervous to see if this was truly going to last. I had faith. I knew what I had been told. This feeding tube cap (literally garbage in my pocket)...Was a sign of where I have been and where I am going. It was not a coincidence and I know Heavenly Father has a plan for Me. I am a survivor. I almost starved to death but I did not. That cap didn't make it through the day and the laundry to be found a year later in my pocket on just the right day for no reason. There was a definite reason. Divine intervention. Don't throw your garbage away! Just Kidding! but always pay attention to the little things You may stumble upon during your day. Someone might be trying to tell You something. Please never give up on yourself! Here is to a new year of mysteries! -Chelle
Sunday, June 11, 2017
Today has been rough a bit. Though I tried to push through it my best... My POTS is flared and has the upper hand today for the first time in a long time. I have had a virus. The past few days... Viruses are the worst thing for POTS it always has the potential to change the course of disease. (Plus I just had surgery) I'm very tachycardic to the point my lungs are having a hard time keeping up with my heart and my blood is thin despite my treatments to rebuild blood volume. I also noticeably can tell my blood is not circulating as well to my brain and heart. Leaving me so incredibly fatigued with any task. My stomach hurts everytime I eat anything. I keep going pale probably due to low blood pressure. I am dropping things because my hands keep going numb. Every step is like walking in mud it takes so much energy out of me. My legs feel heavy. Every movement in general is so heavy feeling it's like I have weights on me. My feeding tube is broken but okayish any day it's going to go. Luckily, I have my G tube on hand but it's going to be a big leap. This is POTS it's ugly and mean... I have a strong faith I will be fine. God told me so. But prayers never hurt anyone 💕 just have to fight this bad flare and put POTS back in its place. (I fight back) love you all 😘-Chelle #chelleshope #onedayatatime #fight #faith #prayers
Friday, June 9, 2017
I have not been able to sleep since surgery. Insomnia is a regular struggle for me. Thanks to Dysautonomia... But it's severe now. Obviously it is 1:24AM. But In the past 15 minutes I realized something... Maybe there is a bigger reason I can't sleep? I was not even on Social Media. But due to boredom I hopped on. Late at night you find several sick people. You find them because they too are suffering from insomnia or painsomnia. They are up worried. Or they are maybe in hospitals up trying to navigate the medical world. However in the past 15minutes I have easily managed to help 2 strangers. In rough situations. All I can think is maybe, Just maybe... Heavenly Father puts me in physical situations so I can be of help to others. Maybe I can't sleep just so I could talk to two strangers and help them along an already tough night. Maybe not sleeping has absolutely nothing to do with Me and everything to do with being available at the right time to help others. I also noticed tonight others weren't on like normal so it was pretty dead for advice. So I would like to admire that God puts us places at the right times. I'm lucky to be able to have the hard earned medical knowledge to help. It's not always fun or easy. But some days or nights helping others makes everything worth it in a sense. I guess it comes down to divine intervention and back to the helping others truly does fill your heart more then anything in this world. Help someone today -Chelle
Thursday, June 8, 2017
I am SO excited I got my Gastronomy tube in the mail today!!