topic Re: Connective Tissue Disorders in Wellness

Connective Tissue Disorders

hick — Mon, 29 Mar 2021 10:33:15 GMT

I'm in the process of getting diagnosed with some type of connective tissue disorder. It's not rheumatoid arthritis. Some skin thing.

Just wondering if any of you are dealing with this and what your experiences have been.

Thanks

Re: Connective Tissue Disorders

Nonametoday — Mon, 29 Mar 2021 12:33:29 GMT

@hick

Is it lupus erythematosus? Systemic lupus erythematosus is the kind that involves other organs but just plain LE involves the skin but there is more than one connective tissue skin disorder, so once you have a specific name, you can be more specific and so can those responding.

Re: Connective Tissue Disorders

SilleeMee — Mon, 29 Mar 2021 13:04:08 GMT

I was diagnosed with scleroderma almost twenty years ago. It has affected almost everything in and on my body, not to mention the emotional and psychological effects which have also happened to me.

Scleroderma means 'hard skin'. But it is more than just an autoimmune skin disorder. It involves everything which has connective tissue....and that's almost everything.

I have heart valve, lung and kidney involvement. Malnutrition and low vitamin levels from malabsorption issues. Incontinence (comes and goes) with both #1 and #2. My hands are permanently in fists where my fingers can't move and cutting my nails has become a huge problem...my rheumy suggested I get my nails permanently removed. I have chronic joint pain everywhere, my neck especially. I have dental problems....lost 6 teeth and gums have receded so much that now I need work done. I have extreme hair loss. My skin is so tight in areas, including my face, that it hurts and itches all the time.

There's more. I know! I sound like a complete mess but that's what it is. It's taken a long time to get along with living and there were times I thought I couldn't do it any more. But I'm still here and doing okay.

Re: Connective Tissue Disorders

skatting44 — Mon, 29 Mar 2021 12:58:19 GMT

There is a demonstrative rash with Psoriatic arthritis .

Re: Connective Tissue Disorders

fthunt — Mon, 29 Mar 2021 13:04:20 GMT

@SilleeMee Read your post twice - I can't imagine going through what you have to endure daily. My heart goes out to you - - truly.

Prayers for you...............

Re: Connective Tissue Disorders

SilleeMee — Mon, 29 Mar 2021 13:07:38 GMT

Thank you @fthunt

Re: Connective Tissue Disorders

NicksmomESQ — Mon, 29 Mar 2021 13:17:28 GMT

@SilleeMee OMG! I'm so sorry for your pain & discomfort.I had no idea you were going through so much.Your're my new hero!! 💐

Re: Connective Tissue Disorders

Terrywu — Mon, 29 Mar 2021 13:30:07 GMT

@SilleeMee , I have a dear friend with scoloderma so I will send an extra prayer for you.

Re: Connective Tissue Disorders

jlkz — Mon, 29 Mar 2021 13:32:37 GMT

@SilleeMee

We never know what life is like for any of the posters on this board. I am so sorry that you have to endure so many difficult ailments. My thoughts will always be with you: no more complaining about my truly minor aging issues !

Don't know how you came to choose your nickname here, but I will think of you as " CourageousMee " !!!

Re: Connective Tissue Disorders

SilleeMee — Mon, 29 Mar 2021 14:42:34 GMT

In my wreckage I've found hidden treasures in myself. Things like being more humble, being more compassionate and learning to live for today...in the moment! Everything happens for a reason, good and bad.

Re: Connective Tissue Disorders

BlueFinch — Mon, 29 Mar 2021 14:57:38 GMT

Having worked in the medical field, I've seen a couple of patients' struggle with this awful disorder. I'm saddened you're one of them, as well.

You come across as very strong, carrying such a burden. And, you're always willing to step up to offer caring advice to others here.

You've not allowed this illness to poison your lovely spirit. You are the light we'd all hope to be, in facing serious challenges.

I'm glad you felt comfortable enough to share your journey here. Everyone has trials, but they're made easier when we don't feel alone with them. Best to you always. {{{hugs}}}

Re: Connective Tissue Disorders

phoenixbrd — Sat, 10 Apr 2021 04:30:27 GMT

@SilleeMee

@SilleeMee wrote:
In my wreckage I've found hidden treasures in myself. Things like being more humble, being more compassionate and learning to live for today...in the moment! Everything happens for a reason, good and bad.

Beautifully said. I've always enjoyed your posts and had no idea of the challenges you face daily. The way we deal with the trials we face, is the true merit of a person. I admire your strength. Wishing you the very best that is possible every day.

Re: Connective Tissue Disorders

BirkiLady — Mon, 29 Mar 2021 16:50:26 GMT

@SilleeMee From previous posts, I was aware you were not healthy and often suffering. However, you had never (to my knowledge) shared the extent of your medical problem. Your strength and resilience keeps you a charming and friendly person who contributes well to any conversation. It's a pleasure to "know" another person who doesn't let their health ruin their personality. You live with a devestating disease with grace and dignity.

Thanks for sharing what your life is really like. It was painful to read, but so beautifully written in such a positive attitude. Your physicians must find your office visits a joy in comparison to their other patients! Keep up the great attitude. Gentle air hugs.

Re: Connective Tissue Disorders

SilleeMee — Mon, 29 Mar 2021 16:58:08 GMT

Thank you so much everyone!

But this thread is for @hick and not about me. I hope the OP comes back and gives us an update of their diagnosis. In the meantime I wish the OP the best of luck.

Re: Connective Tissue Disorders

Jersey Born — Mon, 29 Mar 2021 18:53:37 GMT

Thank you, @SilleeMee, for letting us know what you must deal with every day. You are a very strong person and a very lovely one, too. I wish you the very best possible day every day. I had no idea of your daily struggles until now.

You did not hijack the post at all. You simply reminded all of us that we must be kinder to everyone who posts at this forum, because none of us have any idea of the types of personal challenges, experiences, illnesses, or intense issues others face, unless or until a person elects to reveal them. Thank you for that reminder.

Re: Connective Tissue Disorders

Drythe — Thu, 08 Apr 2021 22:26:20 GMT

@SilleeMee

Sending you {{{Soft Virtual Hugs}}}.

***I may not be able to do a certain thing today,

Perhaps I will be able to tomorrow.

I will do what I can today,

And appreciate what each day brings.

💙💙💙

Re: Connective Tissue Disorders

alicedee — Thu, 01 Apr 2021 17:05:03 GMT

@SilleeMee 🌷❤️🙏

Re: Connective Tissue Disorders

goldensrbest — Thu, 01 Apr 2021 17:39:56 GMT

@SilleeMee wrote:
I was diagnosed with scleroderma almost twenty years ago. It has affected almost everything in and on my body, not to mention the emotional and psychological effects which have also happened to me.

Scleroderma means 'hard skin'. But it is more than just an autoimmune skin disorder. It involves everything which has connective tissue....and that's almost everything.

I have heart valve, lung and kidney involvement. Malnutrition and low vitamin levels from malabsorption issues. Incontinence (comes and goes) with both #1 and #2. My hands are permanently in fists where my fingers can't move and cutting my nails has become a huge problem...my rheumy suggested I get my nails permanently removed. I have chronic joint pain everywhere, my neck especially. I have dental problems....lost 6 teeth and gums have receded so much that now I need work done. I have extreme hair loss. My skin is so tight in areas, including my face, that it hurts and itches all the time.

There's more. I know! I sound like a complete mess but that's what it is. It's taken a long time to get along with living and there were times I thought I couldn't do it any more. But I'm still here and doing okay.

I am so very sorry, as you know my dad had this, it is very scary.

Re: Connective Tissue Disorders

Drythe — Thu, 08 Apr 2021 22:27:37 GMT

@hick

Have you gotten any additional information from your physicians?

Wishing you Well

Re: Connective Tissue Disorders

on the bay — Fri, 09 Apr 2021 07:55:39 GMT

@SilleeMee ,

Oh I am so sorry all you are going through. We just don't know do we what each of us goes thru every day. My heart goes out to you.