New beginnings

I am SO excited I got my Gastronomy tube in the mail today!!

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

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 

2%

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!

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 😉

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 

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 😂 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 

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 mouth😂 (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 🙈 (we have not taken ice off these cheeks. In hopes the swelling starts going down soon!) hiding under ice packs lol 

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)

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