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 itπŸ˜‰) 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 πŸ’• 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 πŸ’šHere is to new beginnings and moving upwards! Excited -Chelle 

Tuesday, June 6, 2017

6/6/17

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

2%

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!
I do not think I have enough Ibuprofen! Literally this is not very much (wait it is very much but it is a regular amount) but due to having Gastropresis and the need to put it through my feeding tube. I must have it in liquid. Mostly kids take liquid so I take a lot of that liquid for a simple dose of regular for an adult... I just thought it was funny the pharmacist told my Mom, "this sucks she has to have liquids because it takes so much for her to just have a regular dose. It's so much space!" My Mom said she told him, "You should see my house." (True medical supplies are so space consuming!) Just a little chronic reality tid bit for You. Mom has said a lot this past week "She will gladly give me My job back and go back to work" haha. "She doesn't know how I do it." Or "how I keep track of it all." It is a lot to keep track of my treatments and organization of it is crucial. It's so much work to keep it all together and be prepared and stay on track of my care. Daily it's lists and phone calls. Multiple. It's pill calanders and constant dosing. And that's just one part of things. But it's worth it. Today I even put makeup on. not a sign that I am healed or even fine honestly... But a sign of improvements none the less.
(Gosh, I love contouring especially still with the little bits of cheek swelling! I have yellow bruises and We found today why my stinking chin hurts so bad. It's all yellow under it and now moving down my neck a bit. Bruises!) I can look wonderful, heathy and be super sick. I know how to use that concealer! Sometimes You do just suck it up and put your  "face on"! do your hair... It's good for your mindset. Some days it takes all my spoons but mentally it is so good for me. It's good to take care of your mental state living chronic. One thing I truly do NOT miss is not recognizing myself in the mirror. (No I didn't get distorted but I couldn't get out of my bed. I could not get ready for the day. I couldn't simply put my makeup on or do my hair. I couldn't do anything literally.) And I had tubes being shoved in my body and looking back I was so blessed because Heavenly Father gave me the power to be strong minded. I remember praying that I could not be ashamed of my tubes, that I could remember that tubes were good for me, I could remember beauty was on the inside, And That I wouldn't shy away from foods/people. Gastroparesis wasn't what didn't let me get out of bed that was Dysautonomia. But Gagsripqreais added complexity of getting tubes up my nose, in my arm, chest, stomach. He came through for me. Everyday was not easy but looking back He helped me through that with having that mindset I still own. But I didn't feel like me for a long time. I was too ill and Illness will never look like me. I never want to go back to those days and if a little makeup helps that and helps me feel like me... that's all there is to it. It's worth it all.  But looking good and being sick... it's a super power chronically ill brings me none the less.... That's why we rock the Wonder Woman Hat for good measure πŸ˜‰
Last night we celebrated my wonderful, sweet Grandparent's 60th wedding anniversary! So sweet! (Yes that cake is beautiful! My Grandma was admiring it and I told her,  "I baked it from scratch" jokingly! I always say I bake things from scratch to them when they obviously are store bought haha it's a silly between us. However I do bake well and pretty much only for them. Haha. It takes a lot of energy and effort for a POTSie to bake.)  I have the best grandparents literally! They are full of love always and life would definetly not be the same without them. They mean so much to me I just couldn't explain it if I tried! Too much love to comprehend. Now 60 years of mirage is something to be proud of and we are VERY proud of them❤️ such amazing examples! Mr. & Mrs. Woolford have built amazing lives together and work hard everyday!  Plus, You have a the most amazing redheaded Granddaughter named Michelle! (That's you know the really important part. Haha) Love You Two always and forever! Glad you are mine! -Chelle 

Wednesday, May 31, 2017

Bradycardia (seriously? Is this a joke?)

I'm finally home!! No place like home, truly. I also had a doctors appointment today. My heart rate keeps dropping to the thirties. (Yeah 30s) and after discussion we concluded its my POTS reaction to pain levels being oh so high. A normal bodies response would be a heightened heart rate nope. Mine is to slow. So now my condition that causes high heart rates also is causing low heart rates for me. I am not liking my new scary symptom! Hopefully now that pain is more in control this situation will line itself out! Low heart rate really!? (I can make it better by standing up πŸ˜‚ broken nervous system). One week down hopefully the next week will go so much easier! Surgery is not easy on a POTSie. Obviously tachycardia to bradycardia. I've missed my Wrecker and I am glad to finally be home with him! He brought me every single one of his toys as I slept today. Haha. He knows when I am sick and he always takes good care of me. 
Goofy dog, I love You!
My cheeks have turned a lovely shade of yellow and are healing (Mom says they look so much better. I have avoided the mirror as a general rule of thumb. It's been a good rule. I think I still look like a chipmunk face.) as long as the pain is better I will be just fine puffy faced or not!! I guess the deep bone pain is not really manageable despite the pain meds. You just have to wait it out. My jaw was pretty traumatized as well. I had a lot going on in that mouth apparently. They changed from nasal intubation to mouth last minute since my nasal cavaty is so small. (Anesthiaologist knew of POTS & didn't want to cause more harm than damage knowing how we are. I also bleed a lot so he had to take that into play.) Tummy is better for sure then it was the other day! GI just placed me on a long hold until after 5 and hung up on me... Classy. Maybe one day they will fix their own mistake and get me a tube. Maybe I need an attorney? I do not understand this. (Now I can't call back until tomorrow).
How many weeks have I been trying to get a G tube? I've lost count...  I will not quit trying. More rest and time. More soreness today. Let's heal!-Chelle 

Saturday, May 27, 2017

Hiding From My Cheeks Update

This is my last surgery update I shall be good after this! However I am going to try harder to post more posts in the future of things besides health related... My mind has been full of thoughts lately as realities have hit of how far this year has come for me. The blessings I have received!
Surgery is rough dudes! Not as happy this day. I think this has been harder on me then my Endometriosis surgery. Pain has been very difficult to control. In fact just barely got it back under control. (It's just not holding) That's been a major fight this surgery for me. Chipmunk Cheeks have only grown larger Haha. The ice has not come off this face since surgery. There has been a lot of sleeping for short periods but the second it hits 3hours my pain is out of control again. I'm hoping tomorrow gets easier. Tummy is of course growing angered with very high doses of pain meds and ibuprofen based pain meds too. Kidneys are not thrilled with Ibuprofen (they never like it) having a feeding tube has been nice to get good nutrients for good healing. But I won't. I can't stop eating my ice cream and things like that. Eventhough I can not chew or hardly get anything in my mouthπŸ˜‚ (I am being over protective of my eating skills. I have worked so hard to attain this year. If you don't use it you loose it. I will not let my stomach have a chance in any way to shut down!) the lady in the cafeteria crossed me twice yesterday. It did not work out for her so well, my nurse had to straighten her out a few times. My feeding tube has been leaking a bit I believe. Meaning it's broken I think. It's been in over two times longer then it should be.... We called GI to keep up the fight to get my G tubes. (they wrote the prescription wrong. Didn't put the tube size down. It's been 6 weeks of trying to get them to fix it... It consists of signing a faxed form home health pharmacy has sent multiple times.) prayers my tube does not bust! Literally. I need that thing! Hoping for more rest. Sleeping is the best but my body has been resistant as always. I don't even have to set an alarm clock my body is up and in pain before the next dose is due. Even when I sleep deep. I don't do things like regular bodies. Just need pain to stay in control. It runs rapidly before the meds do. So things up I'm simply recovering. Lots of love always! (I pray my cheeks never look like this again! This picture cracks me up literally you have to have a sense of humor in life!) ooh they got new heart monitors here and POTSies You will dig them! They are portable and tiny. You are not attached to the wall or any machine it's pocket sized and it also does not beep to you in your room it shows at the nurses station and beeps at them. It's like the best invention ever! Similar to a heart halter monitor....
Thanks to all who have been so supportive and kind to me. It never goes unnoticed! Love-Chelle with the Chipmunk Cheeks πŸ™ˆ (we have not taken ice off these cheeks. In hopes the swelling starts going down soon!) hiding under ice packs lol 

Thursday, May 25, 2017

Thursday Surgery, last one?


Wisdom teeth surgery went well. I was very impressed with my Surgeon & anesthiaologist. Both were kind and thorough. They took my conditions seriously and into play without freaking out over it. Very blessed. Heavenly Father watched out for me today and gave me many angels here on earth. Also very very clean facility! Never have been to such a clean hospy! Not once have I had to ask for my port to be swabbed or anything. (Wow!) Post surgery was fun for a few minutes (I guess I sang Miranda Lambert songs. Oh boy! But I truly am happy I woke up happy... Those poor surgical nurses's ears! Bless their hearts.) Too soon though the numbness wore off and ran my good fun! I can not have Epinephrine due to my POTS.... my pain was out of control for the rest of the day from that point on. I was so blessed with the best nurse ever! She was so kind and helped to do everything She possibly could to make me feel better. Overall good things happened today but the pain was not such a fun thing to have out of control. Bless the lady in the bed next to me in recovery we were on the same path... We hurt at the same times and our levels followed each other even when they managed to get it better for Minute or so here and there before we knew it, we both were hurting all over again. (Kinda silly, our poor sweet busy nurse though! My heart went out to her...So thankful for that sweet nurse. Kindness and doing your job correctly goes so far. So grateful for the real nurses out there!!)  This Evening has been much better. I got to my room and changed  back into my Wonder Woman T-shirt. (Maybe those super powers wore off on Me?) This day has been spend with lots and lots of ice on my chipmunk cheekies. 
They were concerned about the nerves on the lower side of my mouth being damaged but I have been hurting in those spots all day with no numbness. Which is a blessing because those nerves can have permanent damage... Blessings! This surgery to get My Wisdom Teeth out was not an elective surgery. They were impacted and had to be removed ASAP. It was a legit problem. There were no other options or choices. I should not need feeding tube surgery leaving me hopefully sugery free for a long long while!! That would highly decrease surgery for me. Mom was by my side as always! I sure am lucky to have such a supportive Mother in My life! She doesn't even know how special and amazing she truly is! Love you Mom!! Through all the Ups and Downs! Oh and Deers!
My cheeks though are hilarious! Currently up waiting on regular night time medications... The hospitalitst does not want to give me my regular potassium. (That I take every single day for a year now... prescription via my nephrologist? Otherwise it tanks and I truly don't know why He thinks I am dangerously making my Potassium high in his head. It's not high we monitor it always. It goes Low. Wish me luck here we don't want critical levels of low potassium to get our daily doses. Always a fight over stupid things no matter where I am. Just do what works for me... My doctors that know my case clearly  know what they are doing!) I am always explaining myself and it is tiring. There are More POTS patients then M.S. And just as many as Parkinson's... It's not a rare disease. It's rarely known of... Which makes the little things for me hard and sometimes dangerous. (Just a little Dysatuonomia awareness folks). I am so blessed today thanks for all the prayers! I am thankful! When I was walking my laps around the hall, My heart was so fully of gratitude not even a year ago I couldn't have done that especially post surgery. I have gained so much. I am improved. Not cured but improved. It's these little moments that tap on my heart strings and bring me joy in life. May everyone have Wonder Woman Stamina this weekend feeling as healthy as possible. Hope hearts are full of joy and peace! Xo- The Chipmunk Chelle (laugh always, even when you can't smile because you had oral surgery lol)

Monday, May 22, 2017

Wisdom

I am so smart I thought I could afford to get some of my wisdom removed... My Wisdom Teeth are impacted so I will be getting them out this Thursday. It's surgery and with surgery for me comes lots of risks and of course I could go out of what little remission I have gained. (If you would even refer to it as a remission)  I could loose every improvement along with my ability to eat by mouth. Hence why I through in a photo of me eating! It's such a blessing! Eat and be merry! However Gastroparesis is  part the the territory I tread with Dysautonomia. Every thing can change the course of disease for me. Lots of faith and prayers because Heavenly Father has a Plan for me. Let's get these suckers out! (They hurt) I also had a big scare last week with my port, they thought I had a blood clot by it. The  Emergency Department Doctor refused to treat me when my doctor called them. Even when that doctor knew how life threatening it was. All I can say is Shame on that doctor! I am glad to announce they found no clot but will be testing my port further. After two days of no sleep and lots of worry! (Very disappointed in the negligence of the ER here)  I also have lots of testing coming up on my neck. EDS is causing hypermobility and we will eventually do Physical Therapy in hopes to help the neck. GI says after recovery I can get my G tube and say bye bye to J tube. Moving forwards getting this daily pain away from the wisdom teeth... Hope, prayers, leaning on faith -Chelle 

Saturday, April 29, 2017

One Year & A Day! (Final tube decision)

A memory crept up on my timeline today...
What a difference one year can make! I was so sick and I never found help. I also never found answers. Now we think it is POTS that causes these fevers. As I still get them sometimes. That was a month long fever that wouldn't break. I also was on immuno suppressants so that meant thought the fever wasn't appearing super high in my case it was super high. I had my port all the time for IV fluids and j feeds... I had lichen planus all over my face. My immune a system was attacking me for sure. And was still just so sickly! I had been in over 4 hospitals and hospitalized. No answers.
No help. A lot of judgement because though I was clearly sick and I had a fever as well, that would not break... But all the tests were fine. I was sick and I was afraid. The healthcare system definelty failed me Multiple times at this point! This picture I hate looking at because I remember it! And I just don't look well... one Year Later...YESTERDAY my GI was on cloud 9 and He is very amazed with my improvements over the past 6 months. It's truly miraculous and I do look so much better! The whole office buzzed lol (I've never been seen with makeup nor hair there. Just emergencies/hospitalizations and surgeries) I am keeping the CURRENT tube I have in. (GJ) due to wisdom teeth issues. Oh yes they have attacked me and I'm getting them out ASAP but of course I have to do it in hospital and it's complicated to get set up! And my Endometrosis needs more weeks to attempt to improve with treatments. Surgery can't fix it all anymore it's now complex & I get to fight it again with treatments. So in the event that the current tube comes out because it's way past its life expectancy and can fall apart (like last year remember that?) in that case he has given me 2 Mic Key Gastric tubes that I will replace at home on my own and I will go to a G tube. Then we will see what time brings and he thinks I will be tubeless in time but also thinks we don't want ANY set backs like moving too fast and agreed as much as he said he wanted to just yank the current tube, I (pit of excitement) I did need a tube to bumper my nutrition still. So to sum this up I will be going to A straight Gastric tube AKA stomach tube. So we are loosing the small intestine tube that bypassed the stomach completely. Truly major blessing here. I am SO grateful and blessed! IT ALSO MEANS NO MORE RISKY SURGERY FOR ME every few months 😊 (J tubes have to be done under surgery because they have to be guided into the small intestine.) so no tube surgery, which will only allow my body to become stronger and it will be less risks for my Dysautonomia to flare severely. (Andy type of surgery, sickness, pain will cause a flare that could be permanent and put me back in bed daily like I have been for the past years. But I have a strong faith though I won't be cured, I will be so much better and functional. That's what God told me that's what I will remember. I know that doesn't mean I will be perfectly fine. I just had a little flare up last night but I'm feeling better today. I also know better and my specialist how my body works in my case and how to help it win. Faith not Fears)
moving forward!! trials to triumphs. Love love You all! -Chelle 

Friday, April 21, 2017

EDS?!

I've had a long day of appointments... (It's that time again ten hundred specialists to see) But I still got to laugh at this sign! "Healing is in the air." I stood there for a minute just to make sure! Lol Only at a Hospital will You find such a sign! P.S don't smoke! It's bad for You! No no! 
We Got stuck on the freeway (they ended up closing it and kicking us off after thirty minutes, prayers for the people involved. Must have been very bad to close down the freeway!) I almost missed my  second appointment #yikes! I get to take a week break from those treatments and start again because well it's tough and my doctor feels a break is needed. So I am taking  her up on My break and hopefully some horrible pain will go away for a few days. (I get a 7 day break) The treatment long term should have a really good pay off. It's simply getting there. Then my Neuro went well. He isn't sure of my hand but does think I could have a pinched nerve in my neck. He says let's wait and see what nerve conduction study shows and we will go from there. We may do another MRI (yay my millionth. I should be glowing from all the radiation I have had)  When I asked,  "If that was the issue what we would do?" he said, "the less we possibly can in your case. You finally have life to You we will not do anything to mess that up." He also reminded me how careful I must be to not get sick in anyway because of the possibility to change course of My wellness with Dysatuonomia. (Good idea) I just want to put a reminder out to everyone that if you are sick... Seriously stay home! So many people are chronically ill and a cold or the flu is a really big life changing event for us! And look at the photo above I look perfectly healthy and fine. You'd never know how fragile my future health truly is by looking at me! He examined my neck and I have been Re-diagnosed with EDS A.K.A Elhers Danlos Syndrome. I was diagnosed originally when I was diagnosed with POTS but current neurologist undiagnosed me when I started seeing him. I suppose I don't have so much going on now that other things are going to be more obvious and prevail. EDS clusters with POTS. I was skeptic I could have EDS so I am not super surprised. However I really don't know anything about it besides it is a collagen disorder. It causes hyper extension of joints and other issues but I know very little.(that's the part I don't like not knowing and having my answers to my questions.)   So um, well I honestly just don't know what to think yet. He said I've been living with it for a while so I know what it's like... (I guess I have research to do) He is putting me into physical therapy for my neck as well but he isn't sure when just because I am already in therapy and he wants to look it out more. I also am going back to follow with rheumatology to see if they can yet again figure out my untied ends to my tests reaults of SjΓΆgren's Syndrome. I put this all in the Lord's hands "Come What may and love it!" Faith. All is well minus some little things! That's the way we like it! Well! -Chelle 

Monday, April 17, 2017

6 Months

Today marks 6 whole months without ANY ER visits or hospital stays!!! And no actual vomiting!! And by no actual vomiting... I mean no wretching my guts out for hours on end making my throat, esophagus, nose bleed while breaking blood vessels in my face. Those vicious cycles are the worst. I make doctors panic. With no releif on all we can give. Not fits! (Nausea is life but hey I keep things in we are good)  What?! I'm blessed! Here's to another 6 months (fingers crossed) well I most likely will have a procedure for feeding tube soon but hey that's a short hospy stay for procedure! (Well maybe I shouldn't say that i aspirated during my last tube surgery and got phnemonia that three ER visits never could find... Then I found out a month later I had phnemonia from my nephrologist by accident. She got the wrong records! Boy was she upset!! No one ever told me that I aspirated during surgery!)  Hope ALL had a healthy Happy Easter Sunday! So thankful for my savior beyond measure-Chelle 

Wednesday, April 12, 2017

What You Aren't as Cool as Me?

What,You can not do tricks while typing?
I can eat hands free, a fully rounded meal folks! (Travels today left it hard to get all the nutrients in) but hey we bolus! I am so much better with my GP! I am eating well still and managing well. I see GI in two weeks to go over tube options. I'm a picky Tubie and I know what makes sense, oh and what I want! A G tube. I'm not ready to have no tube. That's out of the question for today. But I'm ready to step up to a G tube... So I will feed into the stomach and not the small intestine which has been bypassing my stomach completely all along the Tubie days. Making progress! I do a lot of mushy liquids. And I'm always feeling like I'm tweeting my diet to get what is needed in better. It's easy to lean on empty calories but it's not good for a GPer to intake empty calories we can't afford to loose the nutrients. So I am trying even harder to squeeze nutrition in me daily. Orgain is my game. And I do still have Gastroparesis it simply is being more manageable at the time. (I know there has been a lot of confusion on that. I am improved but not cured. I can prove it because I just found food in my stomach from 6plus hours ago. And your stomach should fully empty in two hours. Could be why potassium is dipping because nutrition dies off after spending so much time sitting in the stomach where food is not absorbed.) since I have neurological GP it can improve and also get worse so we pray and do the best we can... And enjoy the good times with faith they will lastπŸ’• The good times like today, eating at our "place".
I've been seeking the treatments of all kinds of kinds for many years now at St Joes. (And a bunch of other places but currently we have been at St joes for my Endometrosis & pelvis. If You are newer I don't speak much but my pelvis was a trauma case injury due to my disease being so bad and untreated. My body turned freaked out So injury occurred  and I Was in the same shape as someone crushed in a rollover accident minus broken bones. I had three years of physical therapy. And I am back into therapy again since my last surgery irritated the injury. #wompwomp. It will be better again though that's the good part! My Endometrosis had also gotten more severe they found in my last surgery making it harder to treat. It's treatable just more pain for me. I have the best doctor in the world no joke! and now one for my hand too. Anyways!  We always would go to the Park Place Deli. During the good, the bad, and the ugly times. We have to eat. And sometimes there are windows of time to kill... We like our place because it's cool and it reminds us of New York! Today we sat outside and I ate there for the first time in years. For a few years I couldn't eat there just watch. (But I still very much enjoyed the atmosphere) That place is near to my heart. It's dressed up some rough times for me. It's been a place of rest and distraction in some trenches of my battles. We just stumbled across it because the Hospital Front Desk lady gave us a list of places to eat near by one day... when we were newbies... And we were starving! It's really an amazing feeling to be able to eat there again...it feels so blessed in my heart. Today I saw my new hand doc/surgeon and I do NOT have to have surgery because my ganglion cyst has gone away (all while waiting to see a new doc, the old doc did not send my records to me after weeks and therefore I had to get new X rays... That showed my cyst is gone!) but the bad news is I have to have a nerve study on my neck because something seems wrong with my hand still. He bent and messed with my hand and wrist for a long while. (A good doc) He even cared that I fractured it once in my Dance days but he looked at imaging and that part looks perfect (more good news) I have some numbness and pain...  but I think it could just be my Dysautonomia. This doc was extremely thorough and thinks their is more to the story. (Which does follow all my other Heath issues). My pelvis surgeon sent me to him and he operated on her. So I figured if he could operate on one of the countries best surgeons ... Well, he could take care of this handful! He was not afraid of me. He also was really nice and answered my kagillion questions I always have. (He showed his students a few things so of course I needed to know what was wrong with me that we were showing others.... Lol. He graciously explained I have very odd weaknesses in places. I left it at that assuming it's Neuro related. Or Michelle related.) He was very good. I felt safe... I was thrilled to not have the need for surgery! But then about ten minutes after I left, I realized I probably have some weirdo nerve issue that will not be fixable and a pain in the neck! (Nice pun) we will do the testing and I will return for results. We will go from there. Luckily I see my Neurologist next week! I am intrigued on his opinion on all of this... I have been complaining of neck issues for a year or longer now. It's been brushed off. It could just be weaknesses. (Now this info is Dr Me.) My body has been fully deconditioned and I have reconditioned it but... You know maybe the neck didn't get the TLC it deserves. But I am having a hard time holding my head up. I have been feeling unstable in my neck. It also seems to be bending more then it should be able to. Maybe I'm loosing my marbles but I'm typically right when I think something is off... And continues to stay off. Hopefully it will all be easy to find some answers  and easy fixes. If not I will trudge along like always. One day at a time. "Im not medically complicated, I'm medically interesting" potassium I have upped and we will see what my labs show. Luckily the pills are allowed but I may not be able to tolerate them they warned. But I will.  I feel like things have been falling apart because I've been in a lot of pain and I've gotten to see doctors this week and my mind is at ease again and I'm feeling calmer. I have fallen backwards a little bit but it's temporal and not my Dysautonomia. I just have a lot of medical conditions that like to annoy me. Getting all my ducks back in a row again.  I just felt like updating everyone a good update will the info. Lots of love-Chelle 

Thursday, March 30, 2017

Invisible Pain Day Tasks

Today was rough around the edges but by looking at me you would never have known. I had painsomnia last night and probably fell asleep finally around 2 am. I woke up as late as possible this morning knowing I had a full afternoon. My Endometrosis/Adenomyosis  pain level is high. Too high. (I hate those pain charts. In a scale of one to ten they ask... My responses to these questions are normally 50 or 100) but I wanted to get dressed and do my hair and feel semi human despite the pain. So I did it. I was going to hurt no matter what I did today. I also could not take any pain meds because I had to drive and obviously you can't do both... So I trudged through! I went and had my labs drawn out of my port. 
We smile and give thumbs up when we get needles in our chest πŸ‘ Gotta check those electrolyte levels with these POTSie kidneys I own... I then trudged forward to Walmart (cover my eyes) I hate going to Walmart. It's always busy... I park Handicapped and there is always someone who has something to say about it! (I can hear you talking ever so purposefully loud two steps behind me. No, I am not lazy, nor am I borrowing someone else's handicap sticker)  Or they just glare at me... I get that I don't look sick... I truly do but in all honesty We hate being the center of a judge mental skeptical! Younge people get sick too. Most disabitlies are considered to be invisible disabilities which means, You can not tell by looking at the person. That person looks fine on the outside. But I had to get Orgain! And it's the only place I can find it... And I basically live off it. So to Walmart in between appointments I went.
I ended up having to climb in my cart to get my Orgain as they place it on the top shelf. I always look for a helper but they are never findable when I am buying Orgain lol so I improvised. I shouldn't be climbing in my cart. I know. But I got it and felt rather like Wonder Woman. With severe tachycardia.  (I'm contemplating asking a manager if they could move it on the shelf since I am most likely the main buyer lol)  I then got some more essentials... Ginger ale, juice, canned mandarin oranges, & bananas. That's when I realized I basically must be having a rough week to have a cart full of liquids. But I'm not sad or mad. In fact I am so grateful even when I basically go through phases of full liquid diets. It's all good! Like truly my heart is full. I eat by mouth. Some adjustments are made at times but I have not just overcome this challenge I have learned how to balance liquid nutrition. I also have been really feeling like finding and trailing more foods to eat. Especially drinks/smoothies/blendederized foods. Gastroparesis is truly a condition that weens and wanes You simply roll with it and you just ride the tide. Also going to the store to get some groceries made me feel normal again! (Like the little things folks) I also had to get gas in my car for my trip to therapy tomorrow and go to the pharmacy I think for the 3rd time this week! All with very high pain. My days are filled with a lot of medical things. And these things most people don't know or see. I have an invisible full time job taking care of my body. It's true I spent the whole day Monday on the phone all for medical. My GI did contact me back (well I contacted them back they never called me back) yesterday, and I will see him the end of April to go over options... I don't know what my options are with him. (I kinda question if he believes me because he didn't the last time I saw him) but I know I am the boss and I will do what I think is the best for me. (Which I think I already have that plan figured out) I am very concerned my current feeding tube is going to fall out like my old one did. I just keep having this instinctive feeling about it... I don't like that! I have been trying to get a g tube to have on hand at home for just incase...(tubes wear out. They have to be replaced regularly)  Because if I loose a tube I have to go to pheonix and then my stoma would close up and I'd need to have it recut. Which would mean surgery. Most people have G tubes on hand for this reason. People that only have G tubes also can change out their own tubes at home. Unlike a J tube that has to be surgically placed. I wish they would order it and get it to me because my GI agreed to this 6 months ago. But he is "busy" now and that's his answer for everything "I'm busy".  Hey I am busy too!! So this situation makes me nervous! If I do loose this tube and don't have a back up plan and get pushed backwards. It won't be pretty. I don't like fighting with doctors or being forceful to make them do what they say. Bottom line this tube is worn and needs to be replaced... Anyways just an update on the GI tube situation... Time will tell all.
In the meantime I will enjoy what I can and be happy. Bask in the sunshine! Despite the wind -Chelle 

Thursday, March 23, 2017

Gastroparesis choices?

Though its snowy and rainy today the past few weeks have been gorgeous! And this girl has been tolerating the heat! )you guys I couldn't even walk from the car into a building without getting heatstroke the past two years due to Dysautonomia! (Praying it lasts and I can enjoy the sunshine again like I used to) here are some of my good days away week πŸ’• I am so appreciative MY good days! The days I never thought I'd see again in this lifetime!! I am so blessed beyond measure... 
&
& This silly Dog and I 
 
Gastroparesis is having a kitchen full of food, feeling starving, & having no appetite at all... All at the same time. I started this hungry thing last night but nothing suffices. So I keep sipping Orgain. I had breakfast but I don't think it's absorbing fast enough. It seems to just be sitting in my stomach. It's always such a strange thing when you are starving but your body doesn't really want anything. Yet it wants food because it's telling you it's hungry. And then you realize your in the middle of a bodily fight.  Either way I loose. If I eat too much and give into the hunger, I will get pretty sick. If I totally ignore it and give into the lack of appetite I loose nutrition... That I clearly need. Hey body? don't you see my efforts today? Nope? These are the days a feeding Tubie isn't so bad... I can have formula and makeup the difference. With what is going on I am going to be talking to my GI. I want to have a Gastric mic-key button on hand. April is 6months of having my current tube. (G&J) At 6months my last tube literally broke and fell out. I had to drop everything and be taken 5hours away to a hospital equipped for me. I was hospitalized because I could not take any meds or eat by mouth then... I also took the whole summer to regain feeds and I got very weak. So the time has come for decisions. I've been thinking on this for a very long time & I think I have made it. Going to see if we can go from a GJ to just a G tube since I still use formula daily into my belly. I keep pushing forwards. I will get there. I've already made major strides. You guys it is truly miracles. I credit Heavenly Father. He told me he would make me better and He sure has stuck by that! He did too say I would not be cured & I am not. But what I am is very grateful!! Just what 7 months ago... I was drinking though my heart via IV fluids/Port daily. My J feeds were so low... And now I eat food by mouth and use a can of formula to supplement (but it goes into my belly) that's so huge! The formula is full nutrition that I struggle to get like veggies and fruits. I can't digest them. So I have to supplement those nutrients. We are moving towards just Orgain as its a replacement. But I am still formula weening.  I think the best option is to move to the G tube because it gets used. The j hardly gets used and I think it's time to take the training wheels off... Plus if I have a G tube on hand I can replace it on my own. J tubes have to be done under surgery as they go into the small intestine. So if this GJ I currently have breaks (the g tube would be a great backup plan that shouldn't push me backwards at all) and the G tube leaves me with a tube and keeps my stoma open if I need to return to a GJ in the future.(stomas close within hours) I think some time with a G tube is a good solid plan. I put the calls into my GI and we will see if He agrees. That was a big deal for me to make that call today. A very big move. Moving forward in faith not fear! I have some anxieties. I also scheduled to see another hand surgeon today (fingers crossed this one is the one. Surgery is so tiny My health conditions not so tiny) I'm excited to keep moving forwards. Prayers, faith, hope, & spunk will get you through -Chelle 

Thursday, March 16, 2017

Thinking spot

I had a rough & tough week. I had big POTS flare up. (I haven't don't this in 6months) but I have been praying for guidance and I took matters into my own hands and changed things up and it worked for me last night. (That sweater is so true #bless this #mess! Especially this week!) 
I finally slept. I woke up a whole different girl. I'm alive again!! (Phew, that was scary I won't lie. But I kept praying, I kept trying) so today.... One of my favorite things to do is enjoy a nice car picnic. (If you don't know what a car picnic is, it's when you eat in your car  in a simple spot.)  My thinking spot is My old stomping grounds. We grew up there. We spent summers there being free and happy as bees! Dirty feet, water, sunshine, fun.  It makes my heart smile. It was simple times and it's a simple place that always brings happiness. You can feel your childhood calling you! So I go eat my lunch there and enjoy the pretty outside. My body can't always do the old things. Sometimes I can't physically take a walk or go outdoors but I can always go back sitting in my car. I can still enjoy the view. I can still go there. I can still sit and ponder. That I am thankful for. I'm thankful for bites of food, iced tea, fresh air, sunshine filled blessings! It's the simple things in life-Chelle                     Oh yes, I gained a good pound and a half! I had my three week weight check and I gained!! So I am not technically underweight today! That's a happy ending dears!πŸ’• 

Monday, March 13, 2017

Scuffed boots

The other day sitting in sacrament meeting a new anology hit. (As I stared at the glitter felk upon my desk. Wait why was that there? I was having a good day? Oh my angel knew ahead of time I'd be feeling sickly soon enough. I quickly understood the need for glitter as my body took over the rest of my time there. But I got an answer I needed to know in my heart. Before havoc reached me... "Scuffed boots" it was a clear answer to my prayers. Sometimes when you are chronically ill or disabled, your instinct reaction is to cover it up. No matter what, where, or how I am doing there has always been a part of me inside that wants to erase it. I just want life to be "normal" again. I too want to be like everyone else. I don't think it's abnormal to not want to be ill. I think every sick person wants to be healthy fully. That's the goal. But sometimes it simply isn't attainable for all. Some of us come a little different or complicated. You may need a medical degree to know us. And that's okay. You know why that's okay? Scoffed boots.... I have a pair of cute black boots. I got them for Christmas. I loved these boots... I picked them out. And the very first time I wore these boots... I don't know how but they easily were scuffed. I was so mad! My new boots were permanently scuffed up after a few hours of use. Are you kidding me?! But then I laughed because those boots are just boots. I remembered how much I loved those boots and then I decided to wear those boots proudly. That scuff added character. I embraced the flaw, laughed a little & walked on proudly. Every single time I put My boots on I giggle when I think of the character I wear upon my feet... Those boots are more then boots they are a memory that brings me happiness. Happiness in simplicity. They are a reminder of how a little character is life changing. Those pieces that are hard to understand of me, My medical complexity just adds character. It's not all of me but it's a part of me. Sometimes we just have to except that chronic is a part of who we are. Yes, chronic comes with some baggage of some sort or another. There's a lot to construe. I have a lot of juggling in My everyday routine that takes up time and energy. Those are my attempts to fix the chronic as much as possible. To hide it away is my instinct but Heavenly Father doesn't want me to hide it away. What good would that do? What would I learn from My battles in life if I embrace them fully? If I didn't walk around with an arsenal of medical equipment in my purse... To combat my symptoms that are constantly changing from minute to minute. If I didn't have to think or plan every little thing ahead of time to my body's possible needs. Well I would be "Normal" I would be a lot more predictable! but those things are a part of me. The quirks make me a whole me. They keep me humbled among many things. But being different, has been a gift. Heavenly Father let these struggles in not just to build me. Nope, he knew I wouldn't be satisfied with just existing. He knew me. He knew My need to not just  fight my own battles but the will in my heart to help others in the midst of it all. If I didn't have battles of health I would know very little about life.  Oh no He knew I would find others. I wouldn't be able to take this knowledge and try to lend a helping hand without my character. Whatever that means. He knew I couldn't sit on the sidelines of anyone in the midst of a struggle earthly. That I would have to get up and try to help. And I'm glad I have character. Just like those "scuffed boots" a little character never hurt anything. So embrace your character no matter what it is in your life. When you kinda want to have new shiny boots but life gave you scuffed ones... Wear those scuffed boots with joy in your heart. Smile when you look at them. Don't kick them to to curb or wear the other pair. Wear them with dignity. Walk with your chin up confidently in those scuffed  boots that Heavenly Father gifted You to let life change you for the better -Chelle 

Thursday, March 2, 2017

Speaking Up Port 101

Today I had an unexpected event. I went to get my labs drawn via my port. My usually peeps were not there. I used to do my own port care as you all know... But my doctor as of now doesn't want to get me supplies through home health pharmacy for just a lab every other week. (You see, I can not do my own labs at home... I have to go get them done.) I can access my own port a cath. But it's been pointless since off daily Infusions. (Until today) So I go and I put my trust in others. But today really caught me off guard. My new nurse 
Put a dirty germy file on my "sterile field". I should have spoken up then. But I am tired of being the patient who is always speaking up. (You know the pain in the butt one) I knew that was not good nor safe. But I let it slide. Then my nurse brought all of my port supplies and opened them & sat them right on my now dirty field. (From where my dirty file was sat, opened, and roamed through.) She then proceeded to grab my sterile port needle with her bare dirty hands. She touched the needle itself with germy bare hands. Those needles are to be sterile for a reason. I asked her to put gloves on that very second... In hopes she would realize she was contaminating all of my supplies. She assured me she would. But first opened all supplies that are sterile with dirty bare hands. She touched everything. Then put gloves on? I should have refused. I should have left. But I did not. I did not because I am so tired of fighting with Heath care professionals to do their jobs right. They way to not endanger (Me)) the patient. It sounds simple. Just don't let them harm you. But it's not always that simple as the patient. Sometimes they let you second guess yourself. (I had spoken up a few weeks prior & it seemed pointless) Sometimes we don't want to be the bad guys for once. So I had a dirty needle stuck into my heart. Right into my bloodstream. (Dumb) I could go septic over this. It could kill me literally. But hospitals do not have to do these things fully sterile anymore. For reasons beyond me. Because it's dangerous. But the actions by my nurse today were completely inexcusable! That was not partially sterile at all! That was fully germ infested! Pure danger.  So I second guessed myself into thinking it would be okay. I was overreacting...But the truth of it is... It is so NOT okay! The nurse just put me at a huge risk. And if she did it to me... How many others are getting the same treatments? Not all patients know central line care protocols. They just trust those very same nurses to care for them safely. But they are not doing it safely at all. Not there. I can now become very ill. I pray I will not. I'm still mad at myself... So now I will report it so they can hopefully get the training needed to not kill future patients. I will also be more bold in the future & stand my ground. I won't care about the nurses feelings. I will argue my case. I will get eyes rolled at me. I will be scoffed at some more. However, I will be safe and not sitting here worrying I'm going to go spetic. I know what I know. What's the medical world coming to when you constantly have to force nurses to do what they should already be doing in a serious nature? This is my bloodstream... I always wonder in these situations, if that was your family member would you have just done that so carelessly? It's truly frightening. Don't let any medical professional harm you. Take a lesson from my mistake today. Speak up. -Chelle 

Wednesday, March 1, 2017

It's time again

It's Endometriosis Awarness Month.
I've been through many different treatments. I have gone through 3 surgeries to remove Endometriosis. I also have had the nerve that sends the Singal from uterus to the brain cut. That did not work. My pelvis is injured from the Life with Endometriosis. I have seemed therapy for years. I will have future surgeries for Removal of Endometriosis. I've also had Botox injections twice for hopes of pain relief. (Due to my now known case of Dysautonomia that's not an option.) I see top surgeons in the country who only specialize in pelvic pain. They have been true lifesavers! I suggest finding a pelvic pain specialist! They have a lot more resources and are so much more advanced them a typical gyn. (No joke these people changed my life for the better!)  The only option to "end this" would be to do a hysterectomy. I am 24. A lot of people think getting a hysterectomy is easy. It is not easy. In any circumstance. Especially at 24. I've had Endometriosis for ten years now. I'm not totally sure I believe hysterectomies are really a fix. Sure they help but is that really the best idea of a cure? Millions of females start this painful disease in their teens. I was 14, when my symptoms were unbareable. You can not have a hysterectomy until after a certain age. It's too dangerous. Teens shouldn't live with this mess of pain and symptoms. I don't see that as a treatment. The only other option is hormones. To regulate the bleeding. Women with Endo can bleed for months at a time. These horomones do not always fix that either.                
Today I picked up more "horror mones" aka horomones. To add to the ones I'm already on in hopes of future relief. I tend to do poorly on these and have a lot of side effects. Some unbelievable. I'm always nervous to start or try new ones. I mentioned after my last surgery in July that they found my uterus is enlarged and soft a clear indication it's full of Endometrosis. It's so enlarged it appears the early stages of pregnancy in size. (But it's simply just full of disease) On one note I now understand why ultrasound techs would be so mean to me when they ask the famous pregnancy question during ultrasounds to check for ovarian cysts... I always wondered why they were so harsh and glaring at me like I was lying? I was not lying... And I had these tests in high school and they were so much more calm. (Well that situation now makes sense) However they can't do anything about it... The only way to know for sure is to do a hysterectomy and send my uterus off to the lab. (One day that will be done) it's not dangerous nor does it effect pregnancy. But it does cause me pain.  Endo is no joke. It's painful. It grows on your organs. Yes my organs. Vital organs get covered in disease. It causes debilitating pain. The only way to remove the disease or manage it is to cut it out... In some cases that even means cutting out or removing pieces of organs such as the bowel. It's not just cramps. Learn the more @ http://www.endochallenge.com/2017 -Chelle 

Tuesday, February 28, 2017

We Can Change

I woke up to snow falling. Big beautiful feathery flakes! Me and snow, we have a thing. I literally opened the blinds and it was as if the snow had just started falling for me. The snow felt like a sign from Heaven to keep trying. (It was like a fleck glitter. I needed it.) Things do not happen on our time lines. But that doesn't mean what's meant to be won't happen for us in due time. Somedays, I truly wonder why I blog. Why I ever started this thing! Somedays I think, "I've officially lost my mind." And here I am doing it again! But it's always followed with a spirtuial confirmation that I am doing the right thing. So I continue to post about some times seemingly boring thing. Others I wish those days were seemingly boring for they were rough. My life has changed over the past few months. I've witnessed miracles really. I've come a million miles. I won't give up now. Things are really just starting. So what I had a bad week. Am I going to let a bad week defeat Me? No. I want my goals to be reached today. No, that's not true I wanted them to be reached yesterday! I get frustrated. I know these things about myself. I like to think that everything must happen on a perfect little timeline. Which is funny the past 5 years of my life have definitely not been put on a timeline of "life plans". The past 5 plus years were not in my plans. Are you kidding? I begged. I pleaded. I drug my feet. No!  But it was a part of my plan to grow and strengthen me. And when I realized that... I decided to embrace My life. Heavenly Father does in fact give us more then we can handle. Yes. Because if we could handle it... We wouldn't know how to problem solve. We would not know how to make lemonade  out of lemons. I doubt we would know true compassion for others. How lending a helping hand to another in life is life changing. How could we feel if we have not felt hardships? How would we know the good was so good? We would all be comfortable in our little comfort zones. And that my friends, that won't get us anywhere. So I'm going to keep moving out of my comfort zone. Because I have So much more to do, see, & experience. Life will constantly and consistently throw you curve balls. I prefer to dodge them. I don't like things thrown at me. Literally. My hand eye coordination is hilarious. I'm the same way with the metaphor. Satan wants us to doubt ourselves. He wants us to feel like we have failed. He wants to interrupt our Eternal plans. That's how he drives a wedge inbetween our paths to Heavenly Father... In hopes he will win and we will quit having faith in the goodness of life. If He can get us to quit  and give up on our plan eternal he has been victorious. We will quit turning to our Father in Heaven, piece by piece. He is a sneaky little devil! But sometimes you just have to be brave and keep trying, moving forwards. I know Somedays my head just spins but those are the moments we have to be the strongest. We have to put our feelings of doubt aside and just rely on plain old faith.  We don't know what's ahead but let's go forward in faith in Heavenly Father's plans for us, thinking it is a wonderful life. Because it is... Put your umbrella down and dance in the rain. Let's not block the blessings from falling upon us. Especially over worries that someone else might not think we are "good enough" or any thing else. We are! https://www.mormonchannel.org/watch/series/mormon-messages/shower-of-heavenly-blessings 
"Now it's time to finally spread your wings and soar to higher things you know the limit is the sky As you go if you sometimes fail when your spirit's frail remember you were meant to fly"
You can change. Don't give up ever on your goals! 
Chins up Dears-Chelle 

Sunday, February 26, 2017

Thoughts in My Brain from Yesterday

Before church my tummy was so angry. But I preserved  and church was great! I now am drinking some Gatorade to replenish. (I have seen many POTSies suggest using the Gatorade powder and add extra powder so you get more electrolytes) I tried it out and I have to say it is Wayy too much sugar! And I think I will stick to my unflavored pedialyte and juice. I personally don't recommended this Gatorade powder trick. I'm so fatigued. I do drink Gatorade and Powerade on occasion but I tend to always stick to my pedialyte. I did sleep last night (Saturday)  & when I woke up.. I was very disappointed to find an angry body. It was well rested, but the physical stress must be too much and has caught up. I'm tired but I'm happy. I feel so blessed to partake the sacrament no matter how nauseated. That was such a frustration for me, not being able literally physically to even go to an hour of church. It was hard and I felt guilty a lot of Sundays. But as I prayed Heavenly Father told me he understood My efforts. That it was okay & he knew I'd try to muster up some sort of Studies, and mostly conference talks on Sunday's. My efforts were not unnoticed. I don't think anyone ever thinks that one day Church could literally not be an option. Due to physical impairments... But it does happen. I can say General Conference gained a much bigger love during that time!  I feel blessed for the little but big simplicities in my life. Like attending Church. I had a trying week but a good week.
I restarted physical therapy, I had a VW picnic, I got some sunshine. I seem human again. My progress can be slower then I'd like at times but I just have to rely on My faith. Then that means I must work on My patience. Keep smiling, Life is good-Chelle                                                  (I would like to add a side note: sometimes I see some very disappointing posts on Social Media. Poking fun at people's weaknesses. I know memes are funny. I've spent many nights with insomnia reading them and giggling. But there is a line to be crossed. There is a difference between taking a photo off a movie or a clip, using a cat, and using a real person's real life post... as the tail end of a joke. Yesterday, there was a viral photo with a severe skinny malnourished teen. It poked fun at her anorexia. It called her "stupid". Anorexia is a disease. That's not funny nor okay. Her struggles to eat are not a joke. How do You think she is feeling after the photo she posted went viral as a joke on her illness? (Wether she is taking action of care or not. She is clearly struggling.) For all any of us know... it's not anorexia it could be a different disease. One she has no control over at all. I was called anorexic by many medical professionals. Meanwhile I was slowly and rapidly starving to death. I had a paralyzed stomach. No matter how hard I tried the docs wouldn't interviene. Thankfully Heavenly Father guided Me when I wasn't sure if I was really overreacting, or if My specialist was brushing me off. So after not eating for 3months. I went into my appointment and demanded blood work be done to put my worried mind at ease. (She claimed I was fine.) Heavenly Father warned me the night before in prayer to work fast. So I got upset and I remember begging for these labs. She refused. And I left in tears and promised I would never return. (I still have not returned) my PCP the next day started tube feeding me via IV. I was severely malnourished. I did almost die of starvation. So when I can see a physically ill sick person. Who is starving. To the point I can see death is too close for any comfort. It is not funny!! Starvation is truly miserable. It effects everything in you. I remember it felt like my brain wasn't even working. It was physically & mentally draining to put it lightly. It hurt severely in ways you couldn't understand unless you have been there too! And a lot of my Gastroparesis friends can look anorexic at times. What people don't see is under the clothes lays a feeding tube and/or an central IV line. But most importantly a very wonderful person who is struggling to not starve to death. And sometimes they do starve to death.... Many diseases cause weight loss and malnutrition. Anorexia and bulimia do too. They can result in death. So You think that young girl clearly struggling with body image is going to take this viral attack at her body well? (Assuming that's what's even wrong) Dont poke fun at illness in any form. Our laughter should not come from dragging another human being through the mud. We should not tear down to build ourselves up. That's bullying. Love one another. You don't know what you can't see on the outside. You don't know what battles people are fighting on the inside.. What if that was your Social Media post? Or your family members? Would it still be funny or hurtful? Let's just be kind to one another. I am going to work on this too. Kindness is contagious. I also believe being mean is contagious as well. Even unintentionally. Satan wants us to sin. So it's easy to laugh.  But be the light of this earth and the example to treat all with respect, love, and kindness. Online as well. It's easy to hide behind computers... If You saw this girl in real life would you go up to her and tell her she was stupid? Probably not... Treat people the same online as you would in person. I know if we all do these things our hearts will soon be filled with happiness and love. Thanks! Your Friend-Chelle 

Saturday, February 25, 2017

The end to a under slept, under kept week!

I've slept for the first time in a few days! πŸ™Œ I really needed that nap. Dysautonomia is no joke! I do not like it when I quit sleeping. It's torture. Literally they used to make war prison camp victims stand and not sleep for torture. (Yeah, a little fact I picked up from being sick from a doctor πŸ˜‚) I learn all kinds of things just being Michelle!
I did get to restart physical therapy this week and I am ready to heal! The phone saga continues... Still working on getting through to my doc. But she called me today but I was asleep! (It's Saturday. But what an awesome doc to call in Saturday!) She has not received a word of any of my messages. Her office even told me she took care of it... I was skeptical. Because nothing had been done... It clearly was not taken care of. So I got office blocked again. She will call me Monday. And I will be letting her know I did not forget and did MY part... And the things her office have told me over the past few weeks that clearly were not true at all... I've been calling for two weeks! Being chronic is relentless. I'm going to rant for a minute. If you work In a medical office. Some patients believe it or not... Know what they are talking about and doing! We exist. I know not all patients are like me. Some are foolish... But we who hold knowledge do exist.  My doctor really did tell me to find the name of a medication I previously was on, call her office, leave the message, & she would call me back to talk. She really did say She was going to call me... I did not make that up? We had a plan... But bottom line  I was blocked. Because my messages were not relayed to my doctor properly. But I was told My Doctor had taken care of everything. So therefore there was nothing I could do... Luckily my doc will be contacting me again it sounds like and we can straighten it all out. I am getting tired of phone sagas. If you live chronic don't give up. Because sadly this happens often and the doctors are not even involved but you think they are because that's what you are told in the phone.... So don't give up call them until they get so annoyed they put you through (if you have to) don't be afraid to stand up for yourself!                        On a different note, I am slowly continually loosing weight. I hit underweight this past week. It's official. However we don't know what this means. I am eating. I am eating well. So we are calorie counting. Ah! 😩 calorie counting hurts my soul. I start looking at all the foods and I start counting the calories. Before you know it you can't eat a chip without counting the calorie contents... But I am intaking more calories then we suspected so... I'm winning πŸ’ͺ My doctor thinks I may be actually burning more calories then normal...  We are running out of conclusions. So this should be fun to figure out... Dysautonomia is dysaregulation of autonomic bodily functions. I have tachycardia among many other things often. If I truly am burning more calories to maintain my weight... My gut tells me it's going to be interesting to find the bottom line of where and what is the target.  Wish me eating luck, and pray for sleep! Crazy hard week is almost over -Chelle 

Thursday, February 23, 2017

Temper Tantrums

My body has forgotten how to sleep.
Right now it's down right "throwing a fit" as I say. My body is detecting the weather change. Yes. The weather change has made my body mad. Yes when your autonomic nervous system busts... Nothing can greatly affect you!  My body it throwing up a fight. Literally. I have a fever. Even despite the Tylenol. I'm not deathly ill but I imagine tomorrow will be a trying day for me. In fact I just feel like my nervous system can't make up its mind. And that's truly the case. My brain thinks I'm in danger. It's sending the signals to my body. I have severe insomnia. And I finally threw in the towel. Sometimes you have to quit. Sometimes you let the toddler for instance throw the tantrum. That's what I'm doing. I am saying "okay body do whatever you are going to do... Because frankly you're not listening to a word I'm saying." I have no more tools for the night. I'm ignoring you! So I will be up having a POTSie Party! It is so fun. The tachycardia is setting in. (That's just great now I'm so super exhausted and I get to run a mile while I lay here. Well I probably won't have the energy to workout tomorrow anyways! So I guess I'll do it now while I lay in bed. #POTS.) and if you are thinking "wow how lucky She gets to workout while laying down. NO. It's like the cardio you can't quit. You don't get to stop after 20minutes. I am wasting vital sleeping time. You know when my Autonomic nervous system resets itself every night. Yeah, that's not happening. Fine body. Throw the fit. I'm done. Let's watch social media and Netflix. Sometimes it's truly crucial with chronic illnesses to just say okay. This isn't Burger King but tonight you can have it your way. You have to have a happy medium and the more you fight against it really you're just stressing yourself out further. (To a point) I can not make my body sleep tonight. So I am actually wasting energy being upset about it. So I'm going to quit being upset. I'm going to quit pushing this body to rest, and I'm giving in. For my sanity! You all know I'm a vivid fighter. I think that's been very clear. But something I want to share is, it is okay to just give in sometimes. It's okay! Don't stress over what you can't change. Ride the tide my friends. Ride the tide. Lots of love. Pray for spoons! I'm gonna need them!. -Chins up- Chelle 

Wednesday, February 22, 2017

How I am eating today? Do I Still have a feeding tube?

There seems to be a lot of confusion on why I still have a feeding tube... As well do I still have a feeding tube? So I'm going to straighten those questions out & explain what is now going on in my current situation. You have got questions. I have got answers!!                                                  So Yes I still have my GJ feeding tube. I also have my port a cath. (My port will be going nowhere. That option isn't even on the table.) But as far as feeding tubes I have a tube called a "GJ" tube. That means I have two tubes built into one tube. So the G stands for Gastric. It goes into my stomach. The J stands for Jejunal. That tube goes in through the same spot and continues down into the small intestine called the jejunum. Here is a good image:
(this photo link: https://goo.gl/images/sUdUxT )   People who are tube fed with Gastroparesis 99.9% of the time will need to fully bypass the stomach in order to sustain nutrition. So I always fed through my small intestine by a pump that slowly pumped in formula basically 24-7.
completely leaving my stomach out of use. Because my stomach was so paralyzed at the time putting anything into my stomach caused severe pain and nausea. It was so bad I couldn't keep a sip of water down for years. That's how I almost died in the beginning. So we leave the stomach out of the picture and put a tube in the small intestine the jejunum. The jejunum is where your nutrients are absorbed. So the stomachs job is to mush up the foods we eat. Then the stomach sends it all nice and mushed up into the jejunum (small intestine) to be absorbed. So for years putting a tube into the small intestine and pumpkin formula into that small intestine was how I ate. So why do I also have Gastric  "G" tube? Well my stomach is paralyzed. That meant I sometimes would need to drain bile out of it. I also liked the fact you could eat some ice chips or drink a little and drain it out of the gastric tube. It is a great tool. So my tube is two tubes in one.... And that's how it all worked..... Now skip ahead to today I am eating by mouth. It's been a long process and it's not over. I slowly gained ability to drink my fluids. I slowly built my way up to be able to get balanced nutrition. I then built up to be able to take medication by mouth. With Gastroparesis it's tricky because food or medicine will sit in my stomach a lot longer then normal because it's paralyzed. It can sit in my stomach for over a days time... But we seem to be doing okay. My diet is now mostly liquids. Which is okay! And a lot of Gastroparesis patients live on full liquid diets. I drink a ton of Orgain meal replacement drinks. 
But it's food! My diet is particularly liquids the past 8 weeks. I eat some solids but my bulk nutrition comes in from these Orgain drinks. (I can't eat fruit or veggies keep in mind. They are too hard to digest and I get sick)  Also if you remember a while ago  I had to go back on one can of formula a day... due to my body adapting to the special protein in my formula. The formula is made for Gastroparesis so it's "pre broken-Down proteins" So when I eliminated it and just had normal protien my body was not absorbing it right... My body was not used to regular food proteins. That was the start of another weening process. I've been on a can a day via my G tube since. That's huge! I had to pump formula into my intestine at a very slow rate honestly. I never hit goal. (Which is why IV fluids were needed. I was choosing between formula and fluids every day. So then we did daily fluids via IV through my port. We are currently off those IVS they were the first to go.) so now I put my formula not into the small intestine but into my stomach. It also is done via gravity... Not a pump... Which means I have a can in a few minutes tops. That's the same as drinking it! (Minus the swallowing.) 
I just put it on this big syringe and pour it into my stomach via the gastric tube.  I accidentally did not get my formula one day last week. And I normally always feel it if I don't get that can of formula but I did not feel it. So for a few days now we are on half can of formula. (Obviously if it does not work we will go back up to one can daily.) SO WHY DO I HAVE A FEEDING TUBE?! Well you guys, I could go sign the death papers. (You have to sign forms stating you understand that removing a feeding tube will lead to death and you basically wave the ability to sue your doctor for taking the tubes out. (Family as well would not be able to) because obviously if you need nutritional intervention to stay alive... You're gonna die or have severe complications by take feeding tubes out.) but I am taking my time to take it out to let my body get the fuel it needs. I don't want to drink the formula by mouth. I mean it's formula. I haven't had the gags in months. (Knock on wood) once I start throwing up I don't stop. So I also don't want to rock the boat of the pukies. I want my body to be in its happy place and stay there. (As do my docs)  I also have a little hand surgery coming up so I want that J tube For one reason... Pain meds slow gastric motility for everyone ... So they make you digest slower. That's why you get nauseated ect on pain meds. I want that tube for that surgery recovery.  I want to see how my body handles that surgery. Every thing down to a tiny cold or tummy bug can alter my course of disease. It has the ability to put me back in bed, change how my Autonomic nervous system is operating, it dysregulates it further. It could put me back to J feeds... So we want to have our tools for that and we want to make sure this body is ready to really take those training wheels off. Getting a feeding tube put in is very hard and most GI doctors do not even do them. In fact we have like three places in our whole state. They mentally have a hard time putting them into a person who seems fine. Also young... They don't like putting them in younger people. Basically babies and elderly patients will get them easily. But for some reason they find it mean to do it to someone like myself. I suppose nearly starving me to death in the beggining was a lot nicer?? I'm not sure how I feel about that stigma of an excuse. So feeding tubies are hard to get in the first place. My stomach is STILL PARALYZED it's just able to tolerate foods right now. It's a fight daily but it's worth it. Actually my small intestine is a little paralyzed as well, if we wanna get technical. My stomach paralysis comes from my neurological condition Dysautonomia. (That is also the reason we have this improvement in my GI function. My Autonomic Nervous System is sending the messages better to the GI tract.)  So I am doing super well with the feeding and now I hope you can see the difference in the way I use my feeding tubes. In the beginning I ate through my small intestine totally bypassing the stomach. The stomach was not used for anything! I had to drain bile out of my stomach because it would just sit there. Stomach was out of order. Now I am able to literally put formula into my stomach. And eventually I won't need the formula. We are weening off of it. So that's how I eat, the changes in feeding tube uses, and why getting feeding tubes removed isn't just so easy to do as far as the getting one back in if needed another one down the road. The goal is to remove this two in one tube but it's not hurting anything. We don't want to set me up for failure by moving too quickly. I do have to make the decision in April I believe to replace the feeding GJ tube. (As they need replaced regularly) if it falls out or gets pulled out in the meantime I will most likely choose to try to leave it out and see what happens. (Yes those things happen often with feeding tubes) but also its clamped into my small intestine so no also ripping it out on purpose is not an option either lol... so there is the update on my Tubie life -Chelle