Reactive Chemical Gastropathy, The Flu, And Me...

[Becia]

We make quite the person right now.

Heard back the results of my stomach tests and biopsies. Reactive chemical gastropathy was diagnosed with my stomach biopsies. The treatment? "Well, we are not sure, because you don't have gastritis." No, but I do have gastroparisis, and the RCG can be a result of that. How you plan on helping the gastroparisis, in hopes that this other thing can be better? "We are not sure at this time, just keep doing what you're doing." If I had a nickel every time I've heard that... Well, I wouldn't be rich, but I would be a little more cushy than my finances are now. Seriously thinking at referral to Ohio State for this, I think I've exceeded the limitations of the locals, like everything else.

I currently have the flu, thanks to a peck from my youngest niece when she visited me Friday. Talk about symptom upflare. I was just getting out of a flare up, had managed pretty decent throughout, and then bam...friend came to check on me Monday, couldn't get me roused from the floor, and I apparently didn't know who he was, how I got there, but every time he helped me up, I passed back out. spending hours at a time on the floor is not my cup of tea, even worse when I'm coming to and have no clue how I got there, etc. he suspects a major seizure made me the way I was Monday, but I was also pretty hot to touch, so no doubt a fever didn't help that. I haven't moved from bed unless it's to try crawling to the bathroom since Sunday, when I passed out at lunch out with friends, and couldn't stay upright. When I do get up, something that used to take two minutes, is now taking 45 minutes or longer. Upright and I are just not mixing.

There's talk of me possibly going back to a nursing home in times like this. I had a major freak out with my POA about this, as my last experience was a nightmare. I agree, it would be nice to have some extra help when im this symptomatic, but so far, I haven't qualified for anything, if things don't begin to get more stable in the next day or two, I will most likely be admitted, if he has his wish (he's on the board of a local nursing home as well...sometimes I don't know if it's helpful or scary how powerful he can be; he even got a U.S. Congressman involved in my disability case, because "Bob owes me a favor."). I admit, I hate being alone when I'm Iike this, it's scary enough to me as is. But I have been doing something very unusual, which is asking for help. Jsut seems to be met with a lecture about how I usually have it together, should be "fine" now, and met with "I'm so busy, I can't do that" a whole lot. it would be nice if home health could help out, but I keep being told I'm too independent. I'm sorry, I didn't realize being diagnosed with EDS and POTS meant I just gave up trying. I had hopes of going back to bike racing one day...right now, I just want to make it to bathroom and maybe kitchen for a brownie right now. And wait until I have surgery again, oh, I will be fit to be made, I'm sure. Not looking forward to that part again either.

In the meantime, I'm trying to keep myself busy with jewelry making and knitting/crocheting, trying to accept my current life on the couch/in bed. Doesn't help that the weather has been gorgeous lately, and I just wanna bask in it. Hoping by Sunday some of this has resided, and I can run slides for church. one can hope, it's all I've got.

I'm still reading along here about every day, just not saying much. Don't have the energy for it most of the time, but think of yall often, and hope everyone gets to enjoy some nicer weather and lesser symptoms.

[Sunshinegirl]

I am sorry you are so sick! It is a double edged sword to have such a powerful and pushy dr. in your life. It still is your life and you make your medical decisions. I always try to compromise with such people. Asking for help...that is always hard and I think I don't do it for the reasons you stated.

These conditions are very hard on ones sense of self efficacy. It is hard to come to grips with daily reality and thinking about the future when you are this bad off. I wish I could say something that could actually make you feel better...but the normal things people say don't suffice.

I read your posts and I find you to be quite a hero to me. I don't even know you but I find strength from you.

[Becia]

I always worry about letting people down, whether in making the right decision to go to a nursing home again, or by asking for help even. I typically ask my POA when I get this bad, as he has the key to my building and apartment, so I don't have to struggle to buzz him in. I asked twice this week, and when he came yesterday, I was crying from pain and frustration because I don't want to seem weak, for lack of better terms. He has said he would let me make that call if I needed to go, only excersizing the POA part if I was unconscious, which happens a lot, or if he thought I wasn't making sense (after apparently not knowing who he was and how he got in, and freaking out more on Monday, he thought he might have to). I told him as long as he respected my decision, I would be okay.

I hate admitting I cannot be alone, but I don't qualify for help in so many areas. Doctors just spent two years of my life try to fix me, for a 2 hour genetics appointment to completely debunk. I'm not gonna get better, I will only grow to tolerate it, be comfortable, and go from there. Last nursing home ordeal, I was there for intense physical therapy on my hips, as they had both dislocated, I was in a severe flare of symptoms, and needed more help than home could give. The therapy people and the nursing staff basically made a mockery of my conditions, and made things so much worse. I'm not a google article, sorry folks! Definitely not looking forward to going there if I'm required to do the physical therapy again, because it didn't do anything for me. What I do need, is someone to help me prepare food safely. To help me to the bathroom and back safely. To let me rest, instead of expending the energy i don't have right now, to garner my energy back up. If they plan on doing this said stuff with me, then I'm all for it. And I call the shots of when I leave, easy as that. three days, three weeks, whatever it may be.

Other than my friends, I am alone. I have no husband, I have no children anymore (I raised my nieces, but they are now back with their mother now), it's just me. For the most part, I've figured out ways to do things safely, conserving energy as I can. The assistance groups see that, and think it's all peaches and cream, smooth sailing, she's fine, and for the most part, I guess I am. I've self taught myself how to manage tasks like this. But flares this severe, yeah, makes me wish I wasn't so independent. Also makes me wish more people had a key to my place too...

Thank you for your kind words honestly that made me smile.

Fever is back again, so I'm crawling to the bathroom one last time, and hopefully making it back safely to get some more zzzz's. I'd like to think I might be able to buzz a friend in later to deliver some dinner, since the miso soup I had last night was the first time I ate since Sunday... Don't wanna eat, but know I got to.

[Sunshinegirl]

If I may??? What caused your hips to dislocate? There are conditions that are not able to be found via genetic testing that can cause this and many of your symptoms.

It is my opinion that nursing homes are not good places. I don't blame you for not wanting to go or even refusing to go.

[Becia]

I was diagnosed with Ehlers Danlos Syndrome earlier this year. Nothing seems to stay in place anymore.

[Katybug]

Becia! I'm so sorry that you are still so ill. You deserve a break! Keep your chin up.

[Becia]

We all deserve a break. Sometime I wonder if I got about 12 good solid hours of sleep, if that would help, I hadn't been getting much.

Trying to get around and doing things, but dragging my pillow and blanket with me. so far, still at home.