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 

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 

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 

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 

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 

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 

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