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 ๐Ÿ˜Š (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 Sjรถgren'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 last๐Ÿ’• 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 ๐Ÿ‘ 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 ๐Ÿ’• 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!๐Ÿ’•