Good Thoughts Requested...

My wife was recently diagnosed with Systemic Scleroderma which is an autoimmune disorder that can be similar to Lupus. She has been having issues for almost 2 years and it has taken this long to get a diagnosis. In the past 6 months she has started to suffer severe gastrointestinal issues and lost 40 pounds. She is now down to 85 pounds and obviously cannot sustain this type of continued weight loss. Any good thoughts, prayers, or other moral support would be greatly appreciated.

Steve

You got it!

In reply to SkinnyG: Thanks!

What skinny said.

Prayers and good thoughts for the wife.

I know what thats like. Prayers that they get her on a good treatment plan quickly so she can bounce back.

If you are dealing with gastro issues, consider looking at your dietary options. Gluten and dairy free seemed to help me, as well as avoiding processed foods and stuff with a bunch of preservatives.

Keeping a food log for a month was helpful to help figure out what foods dont sit well with me anymore. I am back to the point where I can eat mostly what I want, but still moderate a few things and avoid a few others completely.

Sorry, I know you didnt ask for advice. Sounds like you have more pressing worries at the moment.

sending 'em your way

Steve, I hope that an effective treatment can be found quickly so your wife can recover soon! We went through a similar situation with our 2nd son. After 2 or 3 tries the doctor was able to dial in medication & dosage to enable a full recovery. It's a journey, but hang in there!

Correct diagnosis is good. Sending good thoughts for a successful treatment plan.

My hopes and prayers for a meaningful recovery.

Sorry to hear that it took so long to obtain a diagnosis, but hopefully a good treatment regimen will turn things around quickly. Sending lots of good vibes your way.

Thanks everyone!

In reply to failboat: She has gone gluten free, but it's only been about 8 weeks. We generally try to avoid processed foods as much as possible. She's been largely sustaining herself on protein drinks, milk and gluten free cereals, because that is about all she can manage to keep in her system long enough to extract any nutrition from. The inability to get and keep food/nutrition in is the most urgent problem at this point.

I really expected once we had a diagnosis things would turn around, but it doesn't seem to be making any noticeable difference. It also doesn't help that when she gets admitted to the hospital the Dr's there change up her meds. This whole thing is very frustrating and I wish that there was something I could actively do other than be her support system to make this go away.

Thanks everyone for letting me blow off some steam and we really appreciate your well wishes & good thoughts.

Tried juicing? It's a great way to pack a ton of nutrients into a small serving and easy to digest since you are removing the fiber.

I have also recently tried the low FODMAP plan to help with my own gastro issues. It has helped me a lot and makes it easier to identify trigger foods that cause flare ups. Might be worth checking out if you have not already. Best of luck!

We're with you both!

Hoping for great things for your wife. You would think the experts could unlock the mystery to autoimmune diseases.

Would any of the biologic medicines help her?

Sending prayers and happy thoughts your way...

I will keep your family in my prayers.

Keeping good thoughts for you guys. Proper diagnosis goes a long way to getting the right care.

Best of luck and medical science to you guys. My thoughts are with you - finally getting a diagnosis is a great milestone.

Good thoughts requested; good thoughts sent.

Thanks again everyone! We've found some "subject matter experts" within a few hours drive (Duke & MUSC) and will be pursuing referrals and treatment options. Hopefully, she gets released (from this visit) tomorrow and can come home for a while.

We had a lengthy conversation regarding short & long term planning today and it was draining for me. I prepped for it and worried about it a lot before. I hope she went all ADD and blocked it out or forgot it afterwards.

Hang in there. At least now that there is a diagnosis, the correct course of treatment can be followed.

Sending positive thoughts!! When I was dealing with my small intestine fibrosis and constriction after my car wreck the local Dr's I dealt with were almost no help. My wife and I both did a ton of research on the condition and found a surgeon who listened, took all our data and did the surgery that needed to get done.

Use the subject matter specialists asap. In my case I found I had to be my own advocate and push for changes and tests to be done if I didn't think things were happening fast enough. That amount of weight loss over that short a period is a horrible feeling. No energy, none. If she can handle protein shakes, keep em coming. Try bone broth protein powder (over whey based) and bone broth based soups. The toughest thing I found with most protein shakes is that they are all so sweet. I longed for savory food and the soups helped with that.

Keep your energy up as the support person and make sure you get some time for your batteries as well.

Done.

+1 on finding the best docs. Hang in there and push them to get what she needs.