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Posted By : rocckyd - 4/9/2017 2:30 PM
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.
Single mom to my little man 11yrs old
39yrs old. JRA since a kid. Chronic Uveitis, pleurisy, pericarditis, intersticial lung disease, sjorgrens syndrome, Cushing's Syndrome, gastroparisis
Bilateral TMJ replacements due to bone fusion, port-a-cath, g/j feeding tube, antiphospholipid antibody syndrome(my blood fights itself) epilepsy, MCTD, dysphagia(unable to swallow correctly)

Posted By : (Seashell) - 4/10/2017 6:19 AM
I was wondering about you, as you have been "missing in action."

We both share auto-immune dysfunction, so I try to follow your posts and offer support where I can. When the body sees itself as a foreign enemy, illness takes on an entirely new meaning.

I am glad that the molar extraction is successfully behind you, but less thrilled that pulmonary fluid overload followed as an unexpected consequence. The necessity of taking corticosteroids suppresses the immune system, in ways both small and large. Recurrent infections are a problem of Increasing magnitude for me. It looks like your immune response is routinely weakened, as well.

My mother sometimes asks of me, "when is it that I can expect that you will be better?" She asks with true inquiry in her heart. The inherent problem in my mother's line of inquiry is that there is no "getting better" for me, no unicorns nor rainbows. My mother is 84 years of age and has no acute or chronic health problems. She takes not a single prescription medication. My mother could run laps around me, and does.

All to say, RocckyD, that I can appreciate the disconnection and isolation that accompanies loss of health. Even in the company and presence of family, we can be alone as we sit on the sidelines.

I hope your chest congestion clears and you are on your way home - soon. Home is where true healing begins.
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Post Edited ((Seashell)) : 4/10/2017 6:33:53 AM (GMT-6)

Posted By : HotMess89 - 4/10/2017 2:01 PM
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

Posted By : Sunny13 - 4/16/2017 9:12 AM
Hi Rocckyd,

Good to hear you are still alive and kicking, but so sorry you are not doing too great! I had the manometry done too, and it's not fun! Hopefully it will help you though.

Just wanted to let you know I'm thinking of you and sending positive thoughts and gentle hugs your way!

There's always HOPE.

Many challenges & lot to be thankful for.

Spina Bifida dx age 20; chronic back pain (tethered cord release, CSF leak), spinal cord re-tethered
neurogenic bladder (augment, urostomy, sling)
neurogenic bowel (colostomy)
chronic migraine, TMD
bulging discs etc. C3-C6
bipolar 2, anxiety
chronic nausea
total hysterectomy/surgical menopause @37

& more.

I'll be ok.

Posted By : Mercy&Grace - 4/16/2017 2:28 PM
rocckyd, I think of you often and I say a prayer for you when I do. You Are An Inspiration !

Posted By : (Seashell) - 4/16/2017 9:25 PM
There is no competition as to who has the worst or better health situations, at least from my perspective. Anyone with a chronic health condition is suffering.

While I am faltered that you find my perseverance inspiring, my resiliency is nothing other than trying to make the best out of a less than good situation. I was an accomplished professional and a marathon distance runner. I never saw my life's trajectory being consumed by serious, chronic ill-health. But ill-health found me.

But I will admit that I, too, am often overwhelmed by my body's frailty. I may be engaging at the computer keyboard in writing and composing posts, but I am quite limited in my day-to-day life. It takes my full allotment of "spoons" each day to attend to the small existence that I live (the concept of "spoons" comes from an article called "The Spoon Theory" that describes personal energy when living with chronic health).
My mother was diagnosed with metastatic cancer last week. I am completely lost and adrift.

While I understand that you would like to chat via e-mail or PM, I simply do not have any energy to expend outside of for caring for my mother. My mother is my top priority.

This forum is a caring medium to share and to receive and to give. Feel free to share with the larger community. My sense is that you will be embraced with care and empathy.
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : LexiRae - 4/23/2017 4:14 PM
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

Posted By : theHTreturns... - 4/24/2017 2:55 AM
the turtle sends strength and healing thoughts your way.

Posted By : pitmom - 4/25/2017 6:37 AM
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.
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, wrist ganglionectomies/denervectomies/tenolysis, multiple herniated discs, tarlov cyst, whiplash, bursitis of hips, tendonitis, torus, 3rd degree shoulder separation, torn labrum, ovarian cysts, fibroid tumors of the uterus

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