Thankful but grieving

I’m grieving the life I once had. The life where I could eat anything I wanted. Where I could just go to the fridge and get whatever I wanted to eat or drink. It’s almost been a year since I got my first feeding tube, and although I love my tube and it has given me my life back, I still miss the days of just eating. 
I don’t like relying on a central line to stay hydrated, but at the same time, I’m thankful for it to, because it keeps me out of the hospital, 
I miss the life I had before needing these medical devices, but I’m also thankful for these tools that have enabled me to continue living my life to the fullest. Though there may be days where I don’t tolerate my formula like now, I hope and pray that eventually a solution will be found. I don’t like being hooked up to tubes all the time, but if that’s what it takes to keep me alive then that’s what I will do. I’ve had to learn to be radically excepting and just except that this is how things have to be. Oh how I wish there was a cure for my conditions, but until that day, I will be ever grateful for my feeding tube and central line as tools to help keep me thriving and surviving. 

New Mac from a friend

I’m so excited. My friend gave me a new MacBook Pro for editing my YouTube videos!! Yay! It’s an older one, but it will do the job.
So excited for this.
Ray

Nausea is so so frustrating!!!!

I hate nausea. It is o frustrating!!! I hate it so so much. It comes naturally with gastroparesis, but it is so frustrating. I had to vent my tube this morning because of it. Ugh!!!! I hate this disease!!!

Ray

Medical worries

Hello everyone.

I’m struggling with my feeds. I can only do 35ML per hour and my goal was 80. I’m far from that. We found out that it is just my body not tolerating the rate of the formula, not the formula itself. This is frustrating because I don’t want to have to do another admission to get things fixed again. Hoping we can avoid TPN because it has it’s own risks. Hoping I can get some relief soon and that my body will hopefully begin tolerating the formula at a higher rate. Hope everyone is well.

Ray

Gastroparesis tribute

Hello everyone,

So, on April 1, Amy Lee Fisher, a well-known YouTube or and chronic illness warrior/advocate passed away due to the complications of her conditions. Amy suffered with Gastro paresis, POTS, Ehlers Danlos syndrome, hypokalemic periodic paralysis, and she was TPN dependent due to her G.I. tract failure.

 

Amy will be greatly missed in the community, and her death has greatly affected me. She will always be remembered as the first person who’s videos I watched when I got my first feeding tube. She is the one who taught me to put on makeup with my nasal tube. She will always be out, and her legacy will always live on.

poetry from Ciara 13

Paralyzed by fear,
don’t move, 
don’t speak
don’t scream.
Let them do what they must
can’t escape so i escape into my mind
and then,
split, someone else comes to take my place.
he breaks me and molds me to what he wants me to be
i’m just laying there, alone.
is that all I’m worth?
to be used and abused?
Am I unlovable?

 

 

Thanks for reading.
Ciara 13.

angry and frustrated

It’s Melissa. I am so angry and frustrated. We were talking to Greg yesterday, and he said what if it’s mind over matter about our medical conditions. It’s not mind over matter! We have legitimate medical conditions but the problem is they are invisible! When will people get it question we live with pain every damn day! No matter what we do, there is no cure for our conditions. No, they are not terminal, but they might as well be! No one can truly understand what we are going through physically unless they’ve been through it themselves, and quite frankly, I wouldn’t wish any of these conditions on anyone, not even my worst enemy! And that’s saying something. Why is life so unfair! And I was just thinking the other day, what are people that knew us from before going to say when we get our wheelchair? They already think we don’t need a personal assistant. We hate invisible illnesses? We hate having them and the judgment of others! Sometimes, I just want to break things! I’m just so angry!
Melissa

Finally getting home health

Hello everyone,

So after months of waiting, we are finally getting home health services starting this coming Thursday. The nurse will be coming to change the port needle and dressing so that we don’t have to go to the clinic and face never ending fatigue. We are also in the process of trying to get a custom wheelchair for our postural orthostatic tachycardia syndrome and Ehlers-Danlos syndrome. I am also in the process of trying to discuss with my dysautonomia specialist the benefits of IV hydration and why it needs to continue and possibly be increased. We cannot get enough fluids through the feeding tube alone let alone sodium as well. Hoping all is well with everyone else, and have a great day. Always remember live to inspire.

I am not disabled, I am differently abled,

Ray