A Little About Me
My name is Tonya. I am a chronic illness warrior and am passionate about advocacy. I love to share my story with anyone who will listen.
I have been featured on my local news station and interviewer for our newspaper.
I have numerous conditions such as Gastroparesis (g tube, port, gastric stimulator and on TPN) . I have Primary Immunodeficiency and infuse Hizentra. I have Ehlers Danlos, Autonomic Dysfunction and Mast Cell Activation Syndrome. I have Chronic EBV and had an Acquired Hemaphagocytosis due to being immunocompromised and catching Covid-19 earlier this year. I deal with migraines, hypotension and hypoglycemia as well.
I'm currently writing for a migraine site and volunteer as an Oley Ambassador.
My goal is to bring awareness of little known things about my conditions. I am always bringing new information to my doctors. They appreciate it.
I hope to learn from you all and hopefully, you'll gain insights from me.
Are You Tired Too
I’m starting to think I might have Gastroparesis.
Ever since I was a baby, I’ve struggled with stomach issues. I’ve never been able to vomit normally - I literally projectile vomit EVERY time. I’ve been told it looks like I’m a cartoon when I do it. I end up with EXTREME stomach and throat pain. And over the years, I’ve noticed that I can sometimes not have eaten for 6+ hours but I’m still bringing up an excessive amount of what appears to be undigested food.
This past weekend, I managed to catch Norovirus - the “winter” vomiting bug. Between the hours of 3:30am and 8:30am on Sunday morning, I was curled up on the bathroom floor sobbing, unable to stop myself from bringing stuff up. But I hadn’t eaten since 6:30pm that evening. So, it had been around NINE hours WITHOUT consuming anything other than water.
TRIGGER WARNING - this part might be a bit gross…
When I started vomiting, I could SEE what I’d eaten for dinner. Very clearly undigested cucumber, cherry tomatoes, and stuff like that. I managed to fill a 2 LITRE bowl up twice in the space of about 30-60mimutes, then I continued to bring up insane amounts of bile (BRIGHT greenish yellow) for HOURS afterwards. This can’t be normal, surely? I thought the stomach was supposed to be empty after 4-6hours? But to have a FULL stomach after NINE hours? Jesus. I haven’t felt so ill in all my life.
From all the retching and vomiting, I’ve torn the muscles in my sides and my abdomen - it’s really hard to laugh and cough without crying. My fever was originally 39.8°C but is now down to 37.9°. I’m still achy, though. I imagine it’ll be a few more days before I’m back to my version of ‘normal’.
I’ve had SO many investigations for acid reflux, stomach aches and GERD in the past. All we ever found was the GERD, a hiatal hernia and VERY inflamed stomach linings. Surely gastroparesis would’ve been found before now…? How do I go about having this looked into?
Thank you all in advance, guys. And I’m sorry for the graphic description of my puke. 😬
In this day and age it's unbelieveable
Guess who managed to break her foot by WALKING!
I’m so sick of existing…
Hello, everyone. I hope you’re all doing as well as you can be. I really need to rant to people who may understand what I’m going through. On November 4tb my sister gave birth to the most beautiful baby boy named Oskar. I’ve never loved anything or anyone as much as I love my gremlin (my pet name for him).
Ever since my sister announced the pregnancy, I’ve been terrified that I’ll only ever be known as ‘The Sick Aunt.’ The aunt he will dread going to see because I can’t play with him constantly, I’d have to take several breaks.
And then there have been other things going on…
I’m so fed up with my body. I hate it. Constantly interfering with anything that makes me happy or feel good.
Wanna go to King’s Lynn so I can go shopping? Have a date and then go back to my girlfriend’s house? Nope. Not allowed.
You haven’t paid attention to your bladder today. We’re going to make you piss yourself, then start getting cramps…
Wanna go to the fair? SURE! Ah, oh no… I have to stop after one ride because I was going to faint.
Then, Oskar playing on the floor, he keeps looking at me and reaching out to me. I sit on the floor to play. 5minutes later? Nah. Can’t do that. My hips, back and knees betray me as I slowly have to get up and he’s left with no one to play with.. I’m just so fucking frustrated and so sick of being me.
I just.. I really don’t know what to do. I’m so physically AND mentally exhausted.. I can’t cope with this. I don’t want to exist.
I hate living like this…