I got a new diagnosis

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I just got diagnosed with Mast Cell Activation Syndrome! This is cool because now they can start to work on treating my allergies!!! They started me on two mast cell inhibitors called cromolin and ketotifen. I have no idea if they are helping, but at least we are trying something!

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Update on being admitted

I was admitted Friday at 2 and discharged Saturday at 4.

I had a HUGE room!

The endoscopic procedure fell through because it didn’t get scheduled like we thought and it was already the weekend by the time we found out. We went through with the intestinal cleanout anyway, though.

My veins are getting increasingly more fragile and hard to access, probably do to the EDS symptoms. They did an IV on my right hand on the left side of my wrist by my thumb. I had it for about two hours and the whole time it sent shooting pain up my arm. They later concluded that it was touching the radial nerve. When they took that one out, they tried on the base of my left forearm. They couldn’t access that vein so they tried the right arm in the same location. It worked! I highly recommend getting IV’s in this area. Also, I am allergic to lidocaine, so they used something called bacteriastatic saline to numb where they were putting the IV in. It helped a ton! I normally don’t have any numbing and they have to wiggle the needle around a good amount, and this really helped. They gave me tons of fluid throughout the cleanout! My eyes got so swollen they were difficult to keep open.

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After they placed the IV, they started the cleanout. I am lucky to have a tube, because they ran GoLytely (super strong MiraLax) ramping up to 500 ml/hr from 6 or 7 PM on Friday to about 5 PM on Saturday for a total of 12 liters of laxatives! Granted it was the quickest cleanout I have ever done (I’ve done 4 in total (!!)) They gave me an awesome heating pad for my abdomen because the GoLytely made me so bloated I kind of looked pregnant!

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I had the WORST on call GI! He doesn’t even believe in motility issues and is so condescending!

When the cleanout was done, they did an X-ray do ensure there was no impaction remaining. There wasn’t so they sent me home.

I am now waiting to schedule the endoscopic  procedure outpatient.

So it was an insanely short but certainly not sweet admission.

I have to be admitted

I have to be admitted to the hospital tomorrow. They are going to do an IP cleanout, replace my NJ tube, and do endoscopic injections of Botox into my pyloric sphincter. I think I might blog about it, but I might forget.

The pool is my happy place

The pool is my happy place. This is for a whole host of reasons. They are as follows:

  • Swimming takes my mind off the pain
  • Swimming helps with motility so it helps with the pain physically
  • I don’t get dizzy in the pool
  • Exercise gives me energy
  • Swimming makes me feel free
  • Swimming has nothing to do with food
  • My joints aren’t as bad in the pool
  • Swimming is fun!

The pillow anyone with chronic pain should own

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picture from bed, bath, and beyond

This is the best pillow ever! It is the pillow that I curl up with when I feel horrible. I put it in the corner of my bed and then put my pillow over it. Laying on this pillow is the only way I can get comfortable. I have had mine for five years, and it has held up really well. I highly recommend it for anyone with chronic pain. Here is the link:

www.bedbathandbeyond.com/store/product/crystal-faux-fur-backrest/3310944?Keyword=bedrest+pillow

Hello World

Hi. Thanks for visiting! My name is Zoe. I am fourteen years old and I have several chronic illnesses. This is my blog to write about my life.

I have gastroparesis, which means my stomach empties too slowly. This causes the food I eat to literally ferment in my stomach, which causes a lot of pain, burping, and nausea. I currently have an NJ feeding tube to give me nutrtion straight into my intestines because I cannot consume enough calories orally.

I also have really messed up joints, which we suspect is either Ehlers Danlos Syndrome or Sjogren’s Syndrome.

When I stand up, I get so dizzy the world starts to turn black, so we are also suspecting POTS syndrome.

I am increasingly allergic to more things, so we think I might have Mast Cell Activation syndrome.

I am massively intolerant to gluten, and I might have Celiac.

I am severely lactose intolerant.

I have SIBO.

Also, my gallbladder randomly died so I had it removed in September.

 

There will be more explanation of these issues in further posts, I just wanted to give a quick overview.

 

I am going to use this blog to talk about what I am going through. I might talk a lot about what these issues are medically, how I feel about them emotionally, or coping strategies. I really don’t know, but I am trying this blogging about myself thing out.

 

So feel free to follow me and read my posts, maybe they could help you in some way. I certainly know other people’s personal blogs have helped me hugely.