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