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 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, 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 Sjögren'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 last💕 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