Friday, December 15, 2017

Dysautonomia Life Dec. 2017

I just saw my neurologist today. It has been confirmed my scary high blood pressure was from the massive pain I was in. The pain was in fact a Dysatuonomia flare. This disease is so hideous and mean! Good news is my blood pressure is slightly low and I can start the process of weening off the medication to lower the blood pressure. I also get to go back on fludrocortizone a big treatment for my POTS. This week has been mentally rough for me. Last week they took me off a migraine preventative medication. I had literally every single side effect. It was literally giving me symptoms of Parkinson's disease and that was not fun.  It was holding me down. Neuro also didn't have a "No" response to seizure episodes. They could be seizures... But we simply don't know right now. So this week has been slow and steady attempts to rebuild my health again. My tummy is not being so well. I have vomited several times this week, including some lunch today hiding in the car at the neurologist's office parking lot. Hoping nobody noticed. I haven't done that in well over a years time. Which makes me nervous obviously. The migraine medication was an appetite stimulant. I was afraid once I came off of it after being in a big dysautonomia flare my neurological gastroparesis would be worse. But we seem to be looking up. So hoping tummy gets better too with some time. My IVIG Gamaplexin is on nation Backorder. So all across the country are having to switch. If insurance complies I will have my scheduled IVIG infusions before Christmas (praying they do not make me sick. The last time I had infusions, they made me better and broke my cycle of misery... BUT changing brands can cause some issues.) I have been so frusterated with my body. Last night I prayed and then I opened Facebook to find this, 
 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. 
.... One day at a time -Chelle

Monday, November 27, 2017

Did IVIG help?

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

IVIG- POTS Autoimmune

Wearing the good old "Bless this Mess" sweat shirt. It may be old but it is going to be worn until it can't be worn anymore lol. Sentimental and very fitting? Yes. 
Today is the last infusion of IVIG. I normally don't feel good and it is rough. But I've been so sick lately it's a good day. I think it definetly is helping. My head still hurts. But it doesn't seem to hurt for a little while in the mornings. (Which I will take.) and then it helps to have caffeine but that's being rough on my tummy. I am now not sleeping so hopefully they can help me with that. Rest is crucial. I got to do very light cardio yesterday for 15minutes after IVIG. I think that's an amazing sign. I couldn't even walk to the bathroom last week. My heart rate is high lately so POTS is very revved up right now. My joints aren't kicking up as severely now. I think the muscle spams were linked from the Decadron... Because I have to take Decadron with this IVIG for side effects and that has restarted. Mast cell rash is finally going away after weeks. So if anything the IVIG is helping my mast cell issues! Win! Though I am so far from being well right now. Life has very much 360d this past month and not only have I scared the crap out of my family. I have scared the crap out of myself this whole situation by far has been the biggest fright ever. (For all of us.) I have been very blessed through this and I just know without a doubt things will get better again and this too shall pass. I don't know that timeline. But I know God keeps his promises. I have 3 more months to see if this works for me. It doesn't kick in really for 6 months. But I do feel it made a difference yesterday. My body just feels better all over. Prayers and love to all -Chelle 

Wednesday, November 22, 2017

Thanksgiving Eve

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

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 

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 

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: http://www.theparkerleeproject.org/
#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!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

You are SO lucky you don't have to eat!!

Gastropresis Awareness came early this year folks. 
Sometimes people tell me how lucky I am....They tell me, "I wish I didn't have to eat...Like You." They envy that I seemingly don't have to eat with Gastroparesis (or eat very little). However the reality of this is frightening to be honest. Some days are golden and I am amazed at how and what I can eat. Some days I'm fighting a lot... I fight for every calorie and every bit of nutrition. Some days my body is starving but I can't eat the foods in front of me. But daily it's a battle of some sort. The truth is I do have to eat. My body needs nutrition just like everyone else's. Gastroparesis doesn't mean my body can run on air. It's not a game. It's not simple. In fact maybe, I'm skinny but feeling weak is not fun. Being dehydrated is not fun. Worrying if the tube feeds will end (when I've come so far).... On a bad day is not fun. I do replace what I can not eat daily. At the end of the day, (everyday) I replenish nutrients by Orgain or formula. (So I can maintain a proper BMI. And be healthy. No one sees me sneaking this in.) I have been told too many times to count how skinny I am lately. And the funny thing is, I weigh the most I have ever weighted on my own! I'm holding great. But it's work. Hard work. Balancing nutrition is serious business for me. It's hard stuff. And I want people to see that it's not convenient. In fact being able to eat very few odd things is inconvenience. Knowing if I eat that I will be so sick... It's not pretty. Loosing muscle mass because your body is bow burning muscle because there is no fat left is miserable. Low blood sugar? Not fun. Every single thing in the body is effected with poor nutrition. When I eat a few bites... It's not a choice. I want the whole thing.(the whole enchilada so to speak.)  Wondering, "what can I eat today?" (Every day) Then when the day is ending and I'm realizing I need a lot more food and time is ticking... That's hard... Searching through the kitchen to hopefully find something that I maybe, will be able to eat. Not fun. And then when it doesn't work out and I have two bites. Waste of time. (And food). Be thankful your body has the ability to digest food properly. Because the other side of this is ugly. I always think "no you are so lucky you can eat. Starving is not fun." Just because I can't eat doesn't mean I do not want to eat. Gastroparesis is a condition that weens and wanes. Some days I eat a cheeseburger. Some days I eat a full liquid diet and pray every calorie sticks. Some nights (tonight) I am up late eating in bed, two crackers topped with low fat peanut butter because I know I need the calories. Though, at two crackers I am stuffed. If I continue to force feed.... I will be ill. And I will loose the nutrients I consumed. Also those nutrients I just intook may sit in my stomach for many hours or days. In that time frame, food nutrients will die off, leaving me empty handed. (But my body still says "I'm hungry") Some days I eat so much because I can't take it and I give in to my hunger pains... Then I am literally sick for hours. It wasn't pretty when tubes were being shoved up next to my heart because I was dying of malnutrition. It wasn't pretty when they added the naso feeding tubes. And it was hard living with countless GJ tubes. Surgery after surgery. I still have a feeding tube. Oh did I mention the daily IVS??? Or how easy it was dragging around all of this equipment all of the time. 
Don't take what you have for granted eating is a blessing. And I am blessed to be eating! so blessed. But I just got to thinking maybe this side isn't shown enough.... It's not pretty. Maybe, I didn't educate about Gastroparesis enough and show how serious it is. Maybe I didn't example how important nutrition is to the human body. Unhealthy is never pretty! eat the food. whatever you love eat it! Skin and bones should not be a goal. Healthy bodies should. Tough love -Chelle here is a glimpse of starving for a cure! 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

Eat-anniversary

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. 
 I have the team of the sweetest caring doctors. Gosh I just never give them enough credit. One specialist just called and made me cry (good tears) just out of pure kindness. "Tell your Mom hi." I mean seriously how sweet?! She didn't even have to call me over the little medication break but that's the kind of care I strive for and fight for. I fight for the best care possible. I am one very blessed girl in so many ways!! My doctors each and every one of them are a true blessing. My medical team is such a blessing and I simply have been reminded of that this past week. I love my team and I don't even want to think where I would be without them. We all fight together. It's truly amazing. I'm going to cry some more about how truly blessed I am. I am doing so much better and making big strides. Though I have so much further to go.... I'm going. I'm living again and that's all I can ask for. Today a year ago, I had my Endometriois excision surgery. A year ago today I started eating again.(no surgical reason. Just God. He told me, "to prepare... That I would not be cured but I would function well again. Though it would take time."  It has been such a work in progress and a battle still. But I am doing it on my own. I'm eating!! I'm so proud and excited. Enjoy the simple things in life for they are truly the biggest joys. Tonight, I'm eating a hamburger and I am celebrating eating for a year! (I love my toddler milestones. Who ever thinks they will grown up to be sick? Or not be able to eat for three years? And then eat again? My life is crazy!!! Dysautonomia is crazy to live with. That's for sure but I am oh so blessed and my heart is full!) I'm so thankful for My Father in Heaven who guides me through this crazy life I lead. Looking back is weird looking forwards is weird. Right now. But I know I don't have to worry because, I seriously know I will be okay. I have a plan. His plan. Okay let's quit with the tears and go enjoy our blessed lives! You just never know what a year will bring -Chelle 

Wednesday, July 19, 2017

Pictures That Talk

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

A Simple Notebook

This is a quote out of the Bible. And an answer straight to me from God when I did not know if My life would be even the slightest bit okay. But the night I read this verse during an ultimate trying time in my life. I knew... I would be okay. God himself told me so. I was in fact the tree...
Years ago I started collaborating My "Book of Faith" as I pondered the scriptures. During those times when I read the scriptures as many, I received  answers. It was as if God himself was taping sticky notes into the pages just for me to read. And He was. I got the messages I needed. And I threw them into a scrapbook form so I would not forget those hard but precious times. Today I stumbled upon the special simple book. Covered in verses of the scripture. Some scribbled down. Some nicely written with a pretty decorative twirl. It's just a bunch of paper really. But it means so much to me. My heart fills up just flipping brought it. It was answers on what to do in times of pure turmoil. When the world had nothing, I had faith. Because Heavenly Father Loves Me. Like he loves us all. I knew I was never alone & that I would never be alone in this world. I knew whatever happened. I would be brave and have hope. When hope was not be to had... Because that's what Heavenly Father was telling me to do. He told me to have hope. That's what stemmed this blog and has changed my life completely. Hope is so precious. It's a gift. We all are given hope... Because with faith comes hope. That very how instilled a fighter in me that I didn't even know was there. Due to that I have in fact overcome many obstacles. Some rather miraculous. Trials are sure to come. They will. They will come and they will break us, but if we hold onto our faith in the Lord and his promises to us we will be able to walk bravely in times of turmoil, trial, and personal struggles. We will hold our heads up high in faith that the works will not consume us. And in us will be hope. Because that's what God wants us to do. Hope. Have hope in him and his plan for us. Even when the plan is messy and stormy and we can't see an inch ahead of us. We must keep walking ahead with trust in him and hope for a magnificent future ahead. We all have one. But those trials come to teach us and test us. Without hope they come to break us. But with hope they in turn make us. They push us to become a better us then we could have ever become without them. God shows us who we can be and what we can do through trials. We will do things in life that we never dreamed of. Trials do that. But because of His plan... Hope is always there... And that's when miracles happen. Just hope in His Plan- Chelle 

Monday, July 10, 2017

It's Just Too Much

Last week was HARD! I mean seriously, I don't understand what happens in July but every single year it's a struggle. Maybe, it's because it's the month before  that anniversary comes up of getting sick. Maybe it's the stinking heat and having POTS. I am unsure but every year my brain snaps. So, if You are chronically ill, please don't worry about worry. Because I promise We all worry at some time. That gut wreching feeling that plagues us about what's going to happen to us... In our conditions... That feeling comes. Unfortunately it comes like a lightning bolt. That leaves you in paralyzing fear, with a shattered heart, & a mind full of memories likes picture show of what life was before illness struck. It's like dropping a snow globe and seeing it dramatically shatter in slow motion but Your real life. And there is nothing anyone can do to put that snow globe back together again. I have a strong faith in My God & his promise to Me. He told me I would in fact function well again, but not be cured. But I am too human. Though, I honestly don't like admitting it on my blog that for a second my faith felt small. (But I would be a liar if I pretended it didn't.) Every single year. I have bad days. I just don't let people see them so easily. And that's okay because I do believe in being positive, courageous, and full of Hope! That and my faith in God, Jesus Christ, & the use of the Holy Ghost have turned my what seemingly was a turmoiled, heartbreaking to watch life into a beautiful journey. And due to that my journey has been amazing. Yes hard. But amazing lessons followed by amazing spirtuial confirmations of how much Heavenly Father Loves Me & that I have a plan here on earth and eternal. A plan I willingly and happily abliged to. My journey isn't over and I will as God promised feel better again fully! And that's why at the end of a bad minute, hour, or week when I allow my fears to be bigger then my faith I always come back to him. Because I and none of us are ever alone in ANY times of trial in this world. We have a Savior who cheers us on and lifts us up. Thankfully I choose to snap out of it and come back home to My Father in Heaven and embrace his plan for Me. Even if that plan is not what I had in mind or hoped. Because He has the bigger and better plan. He has the knoweldge of the whole picture of my purpose. He loves me and like a parent He will teach me patience and trust. I will have faith and I will always at the end of the day rest in him. "Knock and it shall be opened" that's all we have to do is knock. (And if you know me that's how I manage my medical care I knock until no more doors are left.) Once I knocked, once I allowed myself to soften my heart and open those scriptures my whole outlook as always completely changed. Peace enters my soul. And today my soul was fulfilled with light. (Even after today some treatments noticeably wobbled unexpectedly, I did not.) May Heaven lift all my sweet friends souls and fill them with peace. We all have bad days it's how we brush ourselves off and get back up that matters. Satan will tempt you into doubt sneakily. But a bad day does not define anyone. Keep going, keep fighting in faith, (even if just a twig of faith), whatever that battle may be. May You be blessed, your heart full of love, & knowledge Your Heavenly Father is always there no matter what -Chelle 

Thursday, July 6, 2017

July 4th. Moving on.

I hope everyone had a blessed, safe, and happy Fourth of July Week! I enjoyed the usual traditions and had my first "Eating" Fourth in years. (That was nice) no IVS as well!! So happy about those big things this year! I enjoyed my Holiday with family and friends and it was in fact great. We are blessed to live in a country founded and built on God. God Bless America 🇺🇸 -Chelle (P.S. Last weekend I ate steak and potatoes au gratin My Fav!
and yes I was in fact in Heaven! Have to share my happy exciting moments. Because eating steak is a big deal for Me! I had to bring it home I can't eat a whole meal in one siting I have to break up my meals and eat every few hours ideally. For Gastoparesis and POTS believe it or not eating too fast will cause the blood to pool into the GI tract and make us pass out and/or symptomatic. I get bad tachycardia. So I ate it twice in one night and at ten o'clock at night I ate steak and potatoes in bed. It was in that moment I realized just how right I was raised) 😉 I have a true feeling this next year is going to be another year of building my strength and health. Moving forwards more one day at a time. The battle is not over. So that I will be doing, patiently as possible. I can say for now some days are better then others. I embrace them. I am still learning how to eat again. That part I am starting to get down... The cooking for myself part is a struggle. Is hard to cook when you eat so little. But it's something I simply have to keep working on. It's weird to realize, I have relearned to eat this year. Now I'm relearning how to balance proper nutrition too. So some days are easier and some I survive... But one thing is certain, I have a plan and I will get there. Something crazy I did this past week was I got out of all support groups. After weeks of praying it was clear. I was nervous because those groups helped me the most in the beginning. But the same people aren't there anymore and they have turned into stressful groups with no support. It a whole different world then three years ago and I believe in being kind. Though part of me felt guilty that I would miss helping another...as I was once helped...  I was very conflicted. I realized I had to put the oxygen mask on myself first. You have to detoxify your life. I have to say it was freeing. Don't let the negativity of the world drag you down. Just find the light in your life. And my few friends that are sick like me that have stuck around are still with me, we have our special bonds. We help each other out as we can and that's all I need. I would help anyone at any time. (Please, Never be afraid to hit that email button. My favorite thing to do is help others navigate the confusion of being chronic or just offering my support.) Upon that leave group clicking. I found myself outside looking up at the pretty stars and moon. I knew in that moment  light is beauty in the world. That My Heavenly Father was directing me. I was doing the right thing. If you don't know I love stars. There is something about light (or to me glitter) in darkness. That's what I strive for to find the light in times of darkness. And when I do, I know I have, because Heavenly Father always sends me a sign... If I'm willing to look... I will be choose to be different in a world that is weak -Chelle "I hope you know You're capable & Brave & significant. even when it feels like you're not."

Thursday, June 29, 2017

Hello Summertime

Some days you own the fact that you have chronic health issues 💪
Today I had my first Coke in years* (totally not okay to have caffeine with POTS... Hello tachycardia.) but it's Summer and I thought, "You only live once." It's a little thing but it's a big thing... Happiness My friends! So we sipped and rotted our teeth away lol Nope, My name is not Crystal... It could be Pearl though as I picked "Cherry Coke". Which is an old favorite... Hmm maybe that's a genetic  thing? But this Cherry Coke is My one time a Year adventure! 
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.
I trialed some treatments that have worked in the past and I hope it snaps me back to the good side of life. Already my joints are feeling better and my lungs are clear from this nasty smoke!. "Just get through July", I tell myself daily... ( I would like to add this year is full of improvements. Even not feeling good. I have improved.) But just two weeks ago I was being snowballed with signs from Heavenly Father that I am moving forwards. And I am moving forwards! That means new trials to turn to triumphs. Sure, new things to conquer ahead... I have got to retrain and restrengthen this weakened body. Which was overwhelming to realize... But then I realized.... "I have the ability to regain physical strength. I probably won't fully regain it honestly. But I can become stronger again... What am I upset about? This is pure hope sitting in my lap!" New tasks to be completed. This World is not holding Me back. I have faith in what I know... And that My friends, is super exciting. That gives me hope. Just keep moving! (Literally) Look for the sparkle in everyday. Find joy in simplicity, for simplicity is where true happiness lies. One day at a time -Chelle 

Wednesday, June 28, 2017

Just a quick medical where I am at, update

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.

(And as I got on my foam roller to strengthen my hip flexors and back and I didn't fall off of it💪 improvements folks! There was a fleck of glitter on the floor next to my roller... A sure sign from above that I am doing the right thing.) Eapecially when it is tough, Keep up your good fights -Chelle 

Tuesday, June 20, 2017

Bye J

Bye J! Thanks for a you have done for me... You fed me, gave me nutrition, & literally saved my life for years. When my stomach paralyzed enough to not even handle a sip of water. It was You who fed me through my intestine. You did the work of my stomach. For that I am forever thankful. Bye bittersweet friend. We had tough times when you coiled multiple times & hospitalized me. When you had to be replaced every few months under full sedation. Minus that one time they tortured me with twilight sedation that did not work on me. You're a good friend. My quality of life bettered thanks to you. Life You sustained me for years. For now we say goodbye because I am so blessed to regain my ability to eat by mouth. I pray this works out and I can continue to be stronger. That I can eat by mouth all the time.  Plus stay out of the operating room. And that the G tube covers your job now of nutritional backup. Gastroparesis I'm here to kick your butt! I'm so blessed to regain ability to eat. Heavenly Father has healed me and continues to. He has Me on a path and I have faith in him. Though I would not be cured, My quality of life would greatly improve. God told me that and it's been true. Today I put My Big Girl Panties on  & I literally Pulled out my own GJ tube all on my own. The whole two feet of it! (Yes, I am rather proud) I also replaced my own Gastric feeding tube by myself. Today I graduated upwards as a Tubie! That old GJ tube was coiled and last night had me doubling over in pain. I suspected the tube was coiled for a while now but it wasn't giving me issues until a few days ago. I was full very quick. (Like two bites) and I was having severe sharp stomach pain. My j tube had come back up into the stomach and coiled in a loop. This in turn made the tube press against the top of my stomach where the stomach and esophagus meet. There is a main valve there. It started actually injuring me and it gave me sores. But I have thought on it. That coiled tube was a blessing. We knew I would most likely be changing my own tube for the first time. (You see j tubes have to be guided under radiology for placement down into the jejunum. Gastric tubes stop at the stomach.) So I was going to have to pull the J portion out of my small intestines. But because of the coiled tube it was just in my stomach and could easily come out. I have had automatic releif of the sharp pain in my stomach I've had for days now. I truly feel it was a blessing. It's just one tube now! Here is to new beggings! "And I am Not My Body"- Stephanie neilson 
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

A year of Faith, Moving Forwards, & Heavenly Signs

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! 

Glory hallelujah! I was growing concerned. Though, I in fact knew I would be okay. When I fall I full fledge face plant. Life of the medically fragile. My POTS was very flared up to the point I was growing concerned. I even started thinking, "Okay what treatment can I start now? What study can I enroll into?" (There are some studies and treatments I follow that are new for Dysatuonomia.)  It takes nothing to turn my life upside down. But yesterday I started turning around. We pray to stay on this good  path. That said, I have a story...
Today I woke up and got dressed. I had labwork and appointments. I had to shove myself back into the world after 3 weeks. I haven't worn these shorts in a year. I almost took them off. I wasn't sure I still liked them. None the less I was sitting in the waiting room hours later. Something started stabbing my hip. So I reached in my pocket to find a feeding tube cap. It made me really think about how far I have made it this year. I had a backpack of formula hooked to a feeding tube the went into my small intestine fully avoiding the stomach. That's how I ate. I had IV fluids everyday. That's how I drank. This was because my feeds were too low to eat and drink and I was dehydrated or starving day to day. So they put me on daily IVS. 
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

Prayers for POTS

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

Late night divine interventions

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

New beginnings

I am SO excited I got my Gastronomy tube in the mail today!!
Isn't it so tiny? (It is smaller in than my current tube but the same size.) yay for that! A G tube is the next step of moving forwards. Scary and exciting. I thought some would like to see what a feeding tube looks like. (Add about two feet to this and another port and that's what my current tube looks like.)  It totally creeps my Dad out. This means no more surgeries for feeding tubes and I can change it all on my own. Growing independence! There is high hopes for the future for me to not have a feeding tube. But there will be no timelines. I am taking it one day at a time. If and when my body is healthy and can tolerate eating fully by mouth. When I am nutritional fully vey safe. Then and only then will I opt to remove feeding tube. Gastropresis You almost took Me but You didn't know how hard I fight back 💚Here is to new beginnings and moving upwards! Excited -Chelle