The Ugly Truth of a Sickie

This post is something not everyone wants to share....I honestly didn't...at first...but it is the "ugly truth" sometimes I can go days without makeup or running a brush through my hair. I do brush my teeth though, that I am sure I do! I don't even bother changing my pajamas... sometimes I even go days without showering...I know it's gross.... weeks are just that rough. This week was one of those weeks...where I don't leave my bedroom. .. I fear the neighbors will see me and cringe. I actually am just so sick During these days I physically can not do the basic task. I find myself on one side of the bed and all my important stuff (medication, bible, kindle,phone,remote) on the other side of the bed. I always wonder if other sickies live this way too and have piles of rubble on their beds? Maybe it's just something that I do... anyways I am glad to announce that I bathed, dressed, got ready for the day, and left my house. No one should stay at home so long... unless like me you have no choice...believe me people. I would be the first one out there working my bum  off if I had the chance at a normal body, day, life. I worked summers in high school. I have a work ethic and a strong one. I miss it. I am not one to be labeled "lazy" a lot of people tend to get that confused about sickies... we are sick and truly not capable... most sickies truly want to live "normal" daily lives. And if you are not sick and faking it you are taking from the  chronically ill community and should rethink your actions. That being said I collect zero from the government. I have been denied for about 1 1/2 yrs. I truly can't function or work. (For years) I have several chronic diseases. A complex little known neurological syndrome. Me and several others are being turned down daily. We live unbelievable circumstances that cost a ton. Our bodies fail us. We did not choose this. It chose us. This is not a poor me post either...it's a so now you know post... there is in my opinion a big problem with sick benefits. A lot of them. Just another issue that needs be fixed... but one problem people don't see is, you won't ever see this big problem until you are on the receiving end yourself and it is too late. Thankfully my parents are taking care of their 22year old adult daughter.  I would be sick and on the curb otherwise. Think of all the parents out there sick...not able to support their families. Did you know when you apply for ssi they have NO deadline to reply. Ever. It can go on for year's. just something to think about.- chelle

healing.

Tube is healing up nicely... this is my gj feeding tube. still on 10ml feeds... long ways to go  suppose to be up to125ml but I can do this! I suppose people are interested in what my tube looks like...i would be...Feeling tough -chelle

Part Two

Peace out Nasojejunal tube

Day after surgery.

The next day my pcp sent me to radiology to have my picc line removed and I again had my Nasojejunal tube yanked and a new one placed. So I could eat something. So desperately I kept trying to get into the wonderful Dr. Teodor Pitea who is an interventional endosopist and awesome! He got me in the following Monday. And viola my gastronomy jejunal tube was placed. No tubes in my nose or arm. I AM FREE!!! Well kinda. I did end up having to stay at the hospital overnight because my POTS flared.... of course. I was roomed at 2o'clock in the morning with what I found a burden.because I was unable to sleep at all due to my new partner's hallucinations. It took my whole stay to learn she was probably having a stroke. Breaks my heart... I have been praying for her. Will you please pray too? She was a dear lady I could tell by how she would get upset if I started hurting. A motherly nature.... I was sent home the next evening and we went to my grandparents in mesa. For a week... perfect weather made for great recovery spot!  I am far from where I need to be with feeding/hydration. Love my tube even though it's sore a lot. I have lost 8pounds this last week... but my doctor puffed me up. So I am still a good weight. Hard being bed ridden so much but God has a plan for me. That I must remind myself daily. Xox-healing chelle

End result gj tube

I'm Back. part 1

These past few weeks have been well crazy...
It started with vomiting up some of my Nasojejunal tube which ended up being E.R. trip numero uno. I also kinda dunked my pics line extensions in the toilet while choking and vomiting my tube. (Yuck).... a clogged Nasojejunal tube, a E.R. visit number two. Which ended in me leaving with a clogged Nasojejunal and getting by on half dose of TPN. Then just a few short days later E.R. trip number three. My arm was swollen, Throbbing, and getting worse by the minute. When my hand felt tingly I knew and dreaded it was time to hit the E.R. it started with a "jerk" of a "doctor" whose first words and concern to me where to ream me like a child who had done something wrong... over getting specialists outside of our tiny hospital..  my answers, A. They don't have these specialists...they don't even exist here. B. I have a very complex case that is very little known of. I need the proper help. He was also mad I came at night?. Then he told me he was going to give me something for pain....okay...my arm was hurting pretty well. But I was totally surprised when the nurse came back with dilauded a very strong pain medication. I denied the medication and asked for something else...less strong. So then he denied me any pain meds! The nurse finally talked him into giving me some different medication. I ended up with  a 4inch blood clot around my picc line (yikes!) From the stressful situation my body endured I of course had a POTS/Dysautonomis flare and ended up in excruciating pain. It made me cry and.scream. it was so bad breathing was painful and felt like a chore! Awful! Well I layed in that e.r. begging for help for an hour. The doctor just stood across the room arms.crossed and smirking... it was some sick game to him. A sick game I wish on no one. Ever! His boss even. Came and asked him to rethink what was going on...etc. he didn't for a good half hour. Then when mom who was upset but totally calm and sitting down. Asked him how his actions where exceptable on any level as a doctor. He s screamed for the poor s scared little nurse to witness I denied the medication when I first got there hours and hours prior.... and for my arm .... not my neurological disorders. He threw his clipboard and called for security as if my mother had done something wrong or to him in anyways. Nope she didn't. He just did not have a way to truly justify his wrongdoing. And I think looking back maybe he is abusing drugs or something. I don't know. But I know care was not there. Nor my safety. No one should ever go through what I went through that night! We have complained and taken proper car of this situation and the doctor did get in trouble and written up. My whole point of writing this us to tell you that you have rights as a patient as a human being. If you are EVER being treated wrongly in a hospital setting....you demand quality control.  If you have a certain doctor who you have issues with and do not want to be seen by him /her.... you have the right for the other doctor or Physician's  to take your case.unless no one else is there you do have to obviously leave..And never be afraid to be your own advocate.you and only you know you're body. I am ending here have much,h more stories to tell...xoxox recovery chelle

Disappear

I promise I did not disappear..... very long sick week. Ended up with 3 eventful E.R. trips and getting my surgery/endoscopy finally a gastronomy jejunal tube! In hospital no. Will post all about it a.s.a.p. hanging tough, lots of love-Chelle

tubes. tubes. tubes

Feeding Tube Awareness Week... My rant about the e.r.... My nasojejunal tube clogged majorily an I was sent to the e.r. bottom line... I exposed my suppressed immune system to everything under the sun(germs) for 3 hours to be told that the radiologist is not there at night. 3 hours for that!!! Oh I also got the I am "complex" lecture because they know. Nothing of feeding tubes. Which is truly inexcusable... Then the physician's assistant asks me what to do but has such a big ego he did not listen. Well he sprayed himself in the face with water while conforming my tube was indeed clogged. I was also told "you don't need to eat today." ... I watched him eat his dinner..... I did not choose my illnesses. I didn't choose a feeding tube. I really, really don't like it when I am treated less than a person due to the fact I am very ill. The attitudes lately from medical professionals have me concerned for the well-being of our health care system. So I am in need of some serious prayers for my new interventional endoscopist to squeeze me in and do surgery to move my feeding tubes into the small intestine and tummy.that will alleviate the pics line(TPN) as well as the Nasojejunal tube...-hoping chelle

Feeding Tube Awareness Week. Step byStep uclogging Nj tube

Today embarks a new beginning of a new week! Feeding Tube Awareness Week!  I am  a tubie (meaning I am tube fed) if you have any questions feel free to ask me :)
Tip # 1: how to unclog a Nasojejunal tube (effectively)
Step 1: get supplies;  you will need a hand towel, a 60ml syringe, a 5ml syringe, & really warm water in a cup. ( and an extra set of hands if possible)

Step 2: fill 60ml with 10-15ml of warm water from the cup.

Step 3: fill 5ml syringe with air by pulling back.

 

Step 4: stick the big 60ml syringe into the port where you connect the feeds (the biggest one) then put smaller 5ml syringe into the smaller side med port.

Then push both syringes at the same time and you should hear a whooshing in the tube.(that's the clog uncloging.) Now if ineffective water will go everywhere. (That's the reason for the towel)

 rehook to feeds

If it is ineffective  try, try again! It normally takes a few tries for me.