My body hates me, and the feeling may be mutual

Long time, no post.

A couple things have been going on, none of which have been very fun. I'm now between 4 medical centers, local, MCV, Duke, and Wake Forest. Thankfully they are on the same records system so everythingzz needed is right on the computer. Plus-I go to different centers for different issues. Duke is immunology and rheumatology. WF is for their motility clinic.

I had a week of testing not too long ago, and I'm thankful for good friends to help with the drives. It was exhausting and I'm still waiting for the gi results. I had a test repeated for the 4th time-ick. It's a manommetry(sp?) where a tube goes through Then you swallow saline water and the results are graphed. Not my fave activity. WF will decide on the next steps gi wise

Feeding tube sight is still a nightmare. I've been vacationing at my local medical resort a few times due to infection and pain control. Still at a loss as to what can be done to prevent the acid breaking down the skin. If/when the tube is ever pulled, then some sort of bag over the site can be used to help pull the acid away from the skin, but for now it has to stay open for feeding tube to be accessed. I do have miracle cream to help with the irritation. Right now the plan is to visit the wound clinic to help prevent future infections.
The stomach acid Is still a killer.
I've also needed the feeding tube replaced due to it taking a field trip. While in there, the surgeon sees the tube to the stomach wall in a hope
that'll stay longer-ummmm not working.

Currently I'm inpatient in MCV which is about 3hrs from home. I came up here to have all the molars pulled since my immune system is attacking the gums. That procedure went ok, but then my body decided to express it's hate for me in every single way possible. I'm not tolerating tube feeds, and I'm swollen all over. Chest is super tight, but for now the images show pleurisy and not advancement of my lung disease.

So here I sit for now. The staff has been great and pain is being managed well. My sweet oral surgeon comes by daily to checkup and visit, even though on his end, everything is all good.

So there's everything in a nutshell. Lots of other stuff going on, but it's just so incredibly frustrating to even go into.

I have family in town back home because my dad's birthday was on the 30th and my brother's and sister's were April 6th and 7th. Nate had a soccer game yesterday and was so excited to have a cheering section. He called me so happy-they won 4-1 and he made a ton of really difficult saves.

Wish I'd been there

I apologize for any typos, I think I caught most of them. I'm just worn out and tired.

Hello Rocckyd,
It has been a while since I have posted here but I read the threads every day! And I must say you and Seashell, along with others, are the reason I keep going every day! You have to be one of the strongest people I know (figuratively speaking of course)! How you find the strength to go on every day is simply amazing to me. You as well Seashell. I pray for you every evening asking God to bring you some comfort in any form. As I find I am being extremely selfish asking for my own comfort when there are people such as yourself going through so much worse than I am.

I would love to be able to talk to you in detail if you can find the time. I know this may not be easy for you with your health and currently having problems. I am in need a friend that understands pain and I am in such a very dark and lonely place at the moment. Not that you need to hear my problems when you have a host of your own, but I think it would do me a lot of good.

And I would love to hear from you as well Seashell. You both inspire me so much!

I hope they can find a fix for your feeding tube to make you more comfortable. I will pray for this tonight. They tell me God doesn't give us more than we can handle, but oh my goodness he must think you guys are rock stars....LOL! And I mean that in a very loving way! My issues are so small compared to what you go through every day I actually feel silly. But non the less I would love to chat with the two of you. How can I do that? Do I send you my email or something??

I hope you have a comfortable evening and God bless you (both)!!

Gentle Hugs.........BIG Hot Mess

rocckyd, I think of you often and I say a prayer for you when I do. You Are An Inspiration !

Hey roc,

Been a while. Good to see you checking in. Sucks about the new/ever present complications. Can def relate to the circus. Isn't it so odd how for some people, sense of self and our physical bodies are so separate and at odds?

Sometimes I wonder how kickass I would be as a whole if all the effort and energy I have to put into keeping this junker body going could be put to other things!!!! Lol

Hi Rockyd, sorry to hear of the current problems.

When I worked as a certified geriatric aide, the nurses would 'paint' the skin around the g-tube with Maalox and mercurichrome, mixed till it looked the shade of bubble gum. Since mercurichrome is no longer on the market, perhaps betadine would be the closest substitute.

I used the mixture on one of my dads' wounds on his ankle. He was diabetic and had atherosclerosis. He had been in the hospital and while getting him into his wheelchair, his ankle was injured. Foot wounds on a diabetic with bad circulation? Usually leads to amputation. His podiatrist was amazed that this concoction helped the wound to heal.

The Maalox keeps the wound at a good ph and I imagine the mercurichrome dealt with bacteria.

I hope you find something that helps.