emmie

Hi Everyone!

8 posts in this topic

Just checkin' in to say hi to all my old friends and welcome to my new friends. I've been reading and staying up to date on everyone. It's great to see this new format and how about Barb's blog?? She is too much!!!

 

For my new pals, my official diagnosis is sclero, lupus, overlap with sicca syndrome (the sjogrens dry eye and mouth thing), autoimmune thyroiditis (Hashimoto's thyroid disease), degenerative disk disease (cervical spine) and autoimmune encephalopathy (antibodies of some sort are attacking various neurons in my brain) etc etc.

 

Anyway with my sclero I have the limited variety with Raynauds. Mainly the skin on my hands and wrists has been affected along with 2 spots on either my face and the lines around the mouth thing. I have gerd which was bad a couple of years ago, got quiet and is acting up recently. My hands have improved greatly over the last few years. So yes, that horrible swelling and tightness and hardness can improve.

 

I have some very mild lung involvement and my last PFT showed a slight decrease so I will have another test in 6 months rather than waiting a year. I think a lot of the success in managing my disease is due to the fact that I see a scleroderma "expert". My rheumatologist is also the person who steered me in the right direction in getting my neurological condition diagnosed and it is a very rare disease. I am grateful for that.

 

On the other hand, communication is difficult due to the many obligations and research activities my dr. is involved in. I also think that since sclero is the total focus of my doctor's research, my other connective tissue issues are not as important and fall by the wayside. For that reason, I am looking for a "local" rheumatologist to deal with my arthritis, dry mouth/eye issues etc.

 

I haven't been around much b/c I'm not feelin very well right now. Insurance company is playing doctor and not paying for my ivig infusions which cost lots of $$$$$. Between no treatment and the stress of trying to appeal this silly desicion and applying for SSDI, I am barely keeping my head above water.

 

Even when I am not active on the board with "words", please know you're all in my heart and I always wish all of us strenght and laughter and love.

 

xoxo emmie

PS sorry sooooo looooooong (guess I saved up lots of words!)

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just noticed this down here on the list with no responses. I am pretty sure I read some of your comments on the other board, so I feel like I know you a little even though I never got around to posting over there.

 

I am sorry you are not feeling very well at the moment. With your long list of personal problems, it is so thoughtful for you to be wishing everyone strength, laughter and love. Without those things, it would be hard enough to cope even in much better circumstances.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi emmie,

 

I'm with jefa... I'm glad you posted such a nice thread and I'm glad you're here.

However, I'm sorry you're being stressed with worrying about such things :( Stressing sure doesn't help with our wellness at all. Please take care and I'm sending warm wishes that you begin to feel better soon!

As for the other... everything always seems to work out, so please... try not to worry.... at least so much?

Hugs, Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Wowsers! Sounds like you have a very busy life goin' on. I can't imagine dealing with all that. I have never heard of the autoimmune brain disease one (I forgot what it's called but I looked it up after I rad it to see what it was...I remember that part.) That sounds really tough to live with. I'm glad you have a Sclero expert handling the disease, goodluck to you in finding a near by rheumatologist to deal with the other stuff. Nice to hear from you!

 

Hopw you're able to get on more often soon.

-luvbnmom3

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Hi Emmie,

 

It is so good to see you hear and posting. I am just sorry to hear all of what is going on with you and especially the frustration with the insurance company! If the people making the insurance decisions could just spend a day in your shoes, perhaps they would rethink their stance!

 

Please know that you are in my thoughts. I hope you will post as often as you can and keep us updated on your progress.

 

Warm wishes,

Heidi

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Hi, Emmie!

I am sorry for all you are dealing with. I hope your doctor or doctors are going to bat for you with the insurance company and that you win! I agree with Heidi that the insurance people would change their tune if they had to spend a day in your shoes! Good luck!

 

Mary in Texas

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Hi Emmie,

I'm glad you are here! Keep fighting that insurance company! I know it is stressful and you want to give up, but don't. I had to fight mine last year because we took our daughter out of network to an expert. Inthe end it paid off, because they approved the visit and they paid. Don't let them win, you pay them to get services.

 

 

Please keep us posted on how you are doing. Keep smiling...... :lol:

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Thanks, friends! Your support and encouragement are just the things I need when dealing with this kind of nonsense! I appreciate it. I know once it gets settled and we can resume the infusions, I'll start perking up again.

 

And I'm starting to think that if it doesn't seem like it's going to settle soon, I"m going to talk to my neuro about any alternatives he might recommend. I want to feel better sooner rather than later!!!!! Dont we all??

 

Can you believe Thanksgiving is around the corner? It is sneaking up on me. I think I am going to write down at least one thing a day I am thankful for between now and then. A good counter-balance for my aggravations! Take care, everyone.

 

xoxo emmie

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