Thursday, June 29, 2017
I also took a simple luxury and bought sunglasses and some makeup. I made myself use up some of my 'ten year supply' of makeup and I haven't bought any makeup minus, foundation and mascara since last fall! (Yes I am proud of myself... That's hard to do for a Makeup Geek.) I am a proud makeup hoarder (as You probably already knew.) However, it was time to clean out the drawers of makeup and use some of it. (Mostly so I could make room for more right 😉😉) Maybe I'll find a new look since I've been on the same three smokey eyes for a year now. A little inspiration. I mean I used to have a new look every week... Haha. I have reserved my makeup skills due to tremors in my hands and weaknesses. What was therapeutic became frusterating. In what felt like overnight. Unsteady hands do make makeup applying harder. But as I have with everything else in life... I won't let disease take that away from Me... I won't let some slight wobbles of eyeliner get in the way of life! (Isn't that what q-tips And "fixing it"is for 😉) I simply just enjoyed My day today and I felt like Chelle again 🙌 (not the old Me... As in before sick... I don't need to be her. Just the regular Me I have become.) Today however, not some incredibly tired aching zombie person I've been for a week. I also woke up at 9am this morning!! That's a victory to my broken sleep schedule! Overall, I had a great day. I wore sunglasses in my house 😂 I loved on My doggie... I was a goofball. I was happy.
Wednesday, June 28, 2017
I'm simply physically tired. The heat is just too exhausting. I mean SO tired I let myself take a nap yeaterday. (You all know I don't let myself nap due to insomnia.) I have seen my pelvis specialist and Endometriosis is finally moving in the right direction. (Took a u-turn by accident post surgery last year.) after altering treatments we are in high hopes we finally are moving forwards though I have a long ways to go. My doctor is amazing and is working hard with Me. Endometriosis is no reason to live in pain. And that's the type of Doctor you should have! Also She doesn't think o have a hernia. My belly is now weakened from too much cutting and that's my pain and weird belly button soreness. (I've had 4 surgeries through that area.) I also had my nerve conduction study on My hand/arm. So, we will see what that brings. If no info we will keep searching. There are reasons. (It could be elhers danlos syndrome. With inflammation I am feeling, I wonder if it's autoimmunity striking up.) I have had a ton of inflammation and pain all over so again, I know something is going on and I just need rheumatology to figure it out. I do have autoimmunity. I have multiple autoimmune diseases... The biggest hang up is... I have been diagnosed with Sjogren's and undiagnosed. My last Rheumatologist left it at he couldn't say "no I don't have it" nor "yes I do"... Come back in a year. So I am going to ask my kidney doctor to help me as she sent me before to an amazing one who was known for dealing with complexity bit the move happened. I need to know definetly because they have just released to all POTS patients that we should if suspiciously are undetermined diagnosis of Sjögren's syndrome we must determine if I have Sjögren's syndrome (I can start IVIG treatments and it should be successful in treating sjogrens and my Dysautonomia.) they also really are starting to find information pointing that Dysautonomia is an autoimmune disease. (Which for me makes sense.) I also am still deconditioned. So I will be in the nearer future picking that apart and entering even more complex physical therapy (I don't think it ever ends, physical therapy.) I am sure this post seems like a downer in comparison to the others. I am still doing so well. I am SO very blessed. I mean I am eating folks! Those mountains I have climbed this year... They were still tackled. I did go to the top... but now it's time to keep moving forwards and keep climbing the rest of those mountains left. Because I do still have a ton of conditions that are contradicting each other. I am still medically fragile and I am physically weak even with my great progresses. So we will start tweaking care again. I just have to get through July and August (mostly July with the heat intolerance.) Due to heat intolerance physical therapy out of town has been paused. (Since it's so severely hot where I attend my treatments.) We all feel it's necessary to avoid the heat. I have to take care of my whole body as a packaged deal. I can not regulate my temperature so heat is horrific to my condition overall. So we will break and restart probably very hard in the fall. That's my update. From the few days of medical evals. After all, "mighty change is mighty hard"- Neal A. Maxwell. Though I am so fatigued and hurting. After a trip home I still got my cardio in because I know how important it is for my body.
Tuesday, June 20, 2017
G tube life here we go! Would You call this The secret life of the American Tubie? Gastroparesis Warrior mode on ✔️ Love -Chelle
Thursday, June 15, 2017
Today I feel like a whole new person! I feel full of life. Today was freeing after being so trapped in the house. I'm happy! I'm blessed!
This photo popped up on my memories today... One year ago my feeding tube broke and fell out. It was a crazy time. (The actual story is pretty funny you'll have to go look back to last year and read it😉) I had spent weeks with my GI explaining something was wrong. I couldn't feed without becoming very ill. I was tasting all my medications that I shouldn't have been but it was going into my paralyzed stomach. I ended up having a hole in My feeding tube so it really was feeding into my stomach. Which was avoiding the whole point of my Jejunal feeding tube. My GI felt horrible about it, He had been very busy and didn't stop and listen to my issues. They all pointed to the issue at hand. Due to that I was not able to eat all that time. I then had to have a full surgery to recut my stoma and replace my feeding tube. I ended up getting refeeding syndrome. Meaning I had to start my feeding rate from scratch all over again. I could only feed maybe 10ml per hour at a time. I was malnourished. It took Me down the whole summer. I battled hard to have my nutrition. The second I regained enough to be in the safe zone, I caught some flu like virus. (In the middle of summer) my neurologist panicked with concern. I will never forget him calling me. I then got over that with a week to spare before going into surgery. (I went back and forth on actually going through with the surgery.) but I prayed and I was told "to prepare." I mean I had been praying for what, 9 years? For healing and one night I was told to "prepare. I would not be healed fully but I would function again." And just like that I slowly regained the ability to eat and drink. I was able to better control my diseases. It was definite divine intervention. God was in fact healing me. The world threw me nothing but ways to become sicker and my body was in fact healing. My mysterious disease was back tracking. My crew of doctors were all stumped but of course we were happy. We all held hope but were nervous to see if this was truly going to last. I had faith. I knew what I had been told. This feeding tube cap (literally garbage in my pocket)...Was a sign of where I have been and where I am going. It was not a coincidence and I know Heavenly Father has a plan for Me. I am a survivor. I almost starved to death but I did not. That cap didn't make it through the day and the laundry to be found a year later in my pocket on just the right day for no reason. There was a definite reason. Divine intervention. Don't throw your garbage away! Just Kidding! but always pay attention to the little things You may stumble upon during your day. Someone might be trying to tell You something. Please never give up on yourself! Here is to a new year of mysteries! -Chelle
Sunday, June 11, 2017
Today has been rough a bit. Though I tried to push through it my best... My POTS is flared and has the upper hand today for the first time in a long time. I have had a virus. The past few days... Viruses are the worst thing for POTS it always has the potential to change the course of disease. (Plus I just had surgery) I'm very tachycardic to the point my lungs are having a hard time keeping up with my heart and my blood is thin despite my treatments to rebuild blood volume. I also noticeably can tell my blood is not circulating as well to my brain and heart. Leaving me so incredibly fatigued with any task. My stomach hurts everytime I eat anything. I keep going pale probably due to low blood pressure. I am dropping things because my hands keep going numb. Every step is like walking in mud it takes so much energy out of me. My legs feel heavy. Every movement in general is so heavy feeling it's like I have weights on me. My feeding tube is broken but okayish any day it's going to go. Luckily, I have my G tube on hand but it's going to be a big leap. This is POTS it's ugly and mean... I have a strong faith I will be fine. God told me so. But prayers never hurt anyone 💕 just have to fight this bad flare and put POTS back in its place. (I fight back) love you all 😘-Chelle #chelleshope #onedayatatime #fight #faith #prayers
Friday, June 9, 2017
I have not been able to sleep since surgery. Insomnia is a regular struggle for me. Thanks to Dysautonomia... But it's severe now. Obviously it is 1:24AM. But In the past 15 minutes I realized something... Maybe there is a bigger reason I can't sleep? I was not even on Social Media. But due to boredom I hopped on. Late at night you find several sick people. You find them because they too are suffering from insomnia or painsomnia. They are up worried. Or they are maybe in hospitals up trying to navigate the medical world. However in the past 15minutes I have easily managed to help 2 strangers. In rough situations. All I can think is maybe, Just maybe... Heavenly Father puts me in physical situations so I can be of help to others. Maybe I can't sleep just so I could talk to two strangers and help them along an already tough night. Maybe not sleeping has absolutely nothing to do with Me and everything to do with being available at the right time to help others. I also noticed tonight others weren't on like normal so it was pretty dead for advice. So I would like to admire that God puts us places at the right times. I'm lucky to be able to have the hard earned medical knowledge to help. It's not always fun or easy. But some days or nights helping others makes everything worth it in a sense. I guess it comes down to divine intervention and back to the helping others truly does fill your heart more then anything in this world. Help someone today -Chelle
Thursday, June 8, 2017
I am SO excited I got my Gastronomy tube in the mail today!!
Tuesday, June 6, 2017
I'm attempting to restart my vitamin regime. Surgery has pushed me off the wagon. With Gastropresis taking vitamins is a tricky task. (Though we struggle with nutrition so we really do need them.) They are rough on the Tummy. A essential trick for vitamins is to get them in a chewable gummy form. These are easier to digest then a pill. Also children's multivitamins are the way to typically go. They are easier to break down and a smaller dose so not to get your tummy too upset. (A smaller dose is better then no dose.) my current regime is children's multivitamin (with DHA as I don't get much of that by eating) the brand Smarty Pants donates profits of sales to women and children who are starving. That's why I bought these at Costco. They got me... After starving myself, I wouldn't wish it on anyone. It is a big deal! So if it helps a child somewhere I am glad to buy them! I also have the B-12, riboflavin, & magnesium for my Neurological issues. Specifically it helps reduce migraines. And I can always tell a huge difference if any of these 3 are stoped in my overall health. (Magnesium Glycinate is a form of magnesium that does not cause GI upsets) my neurologist put me and many of his patients on this two punch kick. He sees improvements and it's not going to harm you really it's a typical vitamin! (Check with your doctors of course though.) So POTSies those 3 are a win! And of course biotin for my brittle hair and nails! I am finally doing so much better with pain and going down on meds. I will finish out antibiotics and hopefully my mouth will heal completely! EDS causes slow healing. I am doing so much better though! My belly will be thankful to rid the antibiotics. They are the worst! I'm ready to start cardio again! It's driving me nuts not being able to do my cardio!! My body is slipping downwards a bit. It is truly amazing how important cardio is to POTS symptoms! I'm starting to move more but my body is icky and I am weak. I also can feel the POTS and the being up is not tolerated. It doesn't take much. This week is resting and working on good nutrition. Also hydration as I was dehydrated multiple times last week. (The worst thing a POTSie can do is dehydrate.) My body is struggling to drink still. It's a daily fight to get what I need in. It's also the week of starting to get this body moving a bit more and awake. But I will get there again. Hopefully next week I can start working towards getting back to my routine! I am missing my routine. But it's good to step away for a minute and see just how much that hard work I put in every day does pay off. Just keep pushing forwards you will get there. One day at a time -Chelle
Friday, June 2, 2017
I followed up with my oral surgeon today (he rocks) though I disagree oral surgery rocks lol... I have an infection that 2% of patients get. Oh yes, 2%. I know that sounds just like a Michelle statistic! Literally. I wish I could win the lottery with this good ole luck I have! More antibiotics, more time and healing. I am feeling the best today I have felt. Pain is so much more in control and going down. The hospitalist kicked me out (I knew) and told my surgeon I was out of pain and wanted to go home. (Well that was not true) my pain was breaking through on IV pain meds at rediculous high doses. So that explains the many days of excruciating pain. I should have been in patient for a few more days. Kinda frusterating but that's corporate medical care via hospitals these days. #awful! I loved the facility so sad the doctor failed. My surgeon was rad though and took good care of me! I'm sure if he was in town things would have been different because he took good care of me when the hospitalist refused to hospitalize me post surgery. (They changed their minds quickly) so more healing!