Author Topic: New to board  (Read 1975 times)

Gonavy629

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New to board
« on: November 15, 2011, 01:40:35 PM »
Hi all,

I was diagnosed with Sjogren's in March. John's Hopkins diagnosed me after 5 years of searching for answers. I have a lot of involvement and from what they tell me, not a typical Sjogren's patient. I have dry eye, mild dry mouth, non length dependent neuropathy, myopathy, respiratory problems, digestive problems and now it looks like I have RA on top of it. I have joint pain, muscle pain, extreme fatigue, brain fog and all around feel like I was hit by a truck every day. I struggle to just get through the day sometimes.

This has forced me to retire from the Navy after 27 years and I have started a new job a couple months ago but honestly not sure if I can continue to work. I am glad that there are others out there that can empathize with me.

Has anyone had to stop working and claim disability as a result of this disease?

Thanks for being here!

Carolina

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Re: New to board
« Reply #1 on: November 15, 2011, 02:23:04 PM »
Dearest GoNAVY!

Welcome to the board.  You sure have a LOT on your plate, so to speak.

You asked about working and disability.

What I have seen here is that this condition affects each person differently, and even varies from time to time for the same person!

Many have claimed and received disability, it is a lengthy process most of the time, but I don't see how anyone can work with the list of conditions that are plaguing you.   You will get lots of ideas, advice, support and attention here from people who know lots more about everything than I ever will!

It will be helpful if you list your conditions, treatments and medications with your signature at the bottom.  You can do that in your profile setting.

That way you don't have to keep explaining things, and people will have a sense of what's going on and what has worked for you.

One key is that what works well for one of us, does nothing for another, and send a third person right round the bend!   This is a long process of finding what works for YOU.   

Again, welcome to the forum.

Keep us posted.

Hugs

Elaine
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Cricket

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Re: New to board
« Reply #2 on: November 15, 2011, 03:36:03 PM »
Just wanted to Welcome you the board!  :)
Female 64 yrs. old with:~Lymphoma ~SJS~, Fibro, Neuropathy, Spinal  Stenosis, Degenerative Discs, Shingles Arthritis, Hypo-thyroid.
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Babs659

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Re: New to board
« Reply #3 on: November 15, 2011, 03:39:27 PM »
Hi, Gonavy, and welcome.  I sure hope you've put in a service- connected claim for Sjs with the VA.  (I'm a Vet Rep).  Mt co-worker put in a claim for a vet and he got 100% based on a lot of your same symptoms.  PM me if you want more info.

Joe S.

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Re: New to board
« Reply #4 on: November 15, 2011, 03:40:24 PM »
Welcome to the forum Gonavy. I hope that you took disability from the navy. I hope to see you post more. You look like Sjogren's to me.
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Duchess

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Re: New to board
« Reply #5 on: November 15, 2011, 03:43:04 PM »
Hi GoNavy,

Welcome!

For I have only been here for less than a month and it's a fantastic place to be.

You will find the people here very caring and helpful.

I don't think that you are an atypical Sjogren's patient. Most symptoms that you mentioned, I have also. 

It is quite an adjustment. I was diagnosed this past winter and I am learning my " new normal".

Some folk are able to work. I guess it depends on the type of job and how Sjogren's affects your body. You can't compare yourself to someone else in that respect because it affects everyone differently.

I had to leave my job. That hurt me so much. I have applied for disability and was denied the first time. I have hired a lawyer and now we are awaiting a court date. It is a lengthy process. Get copies of your medical records. Let your doctors know that you have applied for disability. Their documentations are important. Journal your symptoms and feelings etc.

Have patience with yourself.


Duchess
58 y/o, Sjogren's, Lupus, Raynaud's, Mitral Valve Repair, Asthma, Myofascial Pain. Plaquenil, Inhalers, Ibuprofen,Exovac, Vitamin D, Vitamin B-12, Omega 3, Eye Drops, Quinipril, Massage therapy.

Pisces24

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Re: New to board
« Reply #6 on: November 15, 2011, 04:15:54 PM »
Yes Sjogrens symptoms seem to vary with the individual.  I think the only basic thing is the dryness.        I got cousins in every branch of service. One is retired but at Andrews AFB in CA, another in a sub in the pacific, one in Afganistan, etc.  Glad you do have your 25 in for retirement from the Navy. BTW: Thank you for your service!  8)

I work full time and "so far" my symptoms are terrible teeth, easily gotten infections, and some fatigue. But I have three -ologists who are monitoring a bunch of stuff so basically I could stay the same or the &#%* could hit the fan tomorrow.  I am taking a Probiotic, vitamin d, doing sinus rinses (really cut down on infections) and using a humidifier regularly - per dr's suggestions so doing what I can and listening to my body.

But I do have an FMLA paper on file at work. I would recommend everyone have that. I didn't want an FMLA but my gp insisted when I got the H1N1 and work threatned me w/a reprimand if I didn't come in. You need to protect yourself.

All us here have been through so durn much with doctors, friends, family, etc. you name it. I took 6 yrs to be diagnosed. Everyone here is very understanding and empathetic.  Chances are that someone has dealt with the situation/symptoms you have or is in the process of doing so.

Feel free to post on the boards anytime. We are all in this together.
Welcome to to group!

KellyG999

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Re: New to board
« Reply #7 on: November 15, 2011, 04:30:29 PM »
 ;D

Welcome, GoNavy! And thanks for your years of military service.

I work FT at a stressful job and got myself so worked up and run down that I had to take a 10 week FMLA leave. I am back to work and struggling through the days. If you have an opportunity to get disability through the navy or VA, I'd suggest you do it.

It doesn't solve everything to be away from work, but it sure helped to rest when I wanted or needed to...plus, I drink SOO much water I am at the batroom every 20 minutes it seems. That is way easier to manage at home.

Good luck and keep us posted. We love new members but hate that Sjogrens keeps striking innocent people...

KellyG

A66eyroad

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Re: New to board
« Reply #8 on: November 16, 2011, 07:15:26 AM »
Welcome, goNAVY! I'm glad you found us, but so sorry you had to look.
Female, 61
Sjogrens, UCTD, and subacute cutaneous lupus. Flu-like symptoms, mouth & nasal ulcers, itchy rash, high cholesterol, headache, earache, tinnitis, dizziness. Hangover-like nausea, especially in the a.m.
Plaquenil, Atabrine, DHEA, Aleve, Evoxac, Allegra/Benedryl, esomeprazole.

Gonavy629

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Re: New to board
« Reply #9 on: November 16, 2011, 09:54:35 AM »
Thank you everyone for the welcome. I believe that I will like here...but I won't like this disease.  I have put in a disability claim with VA but I don't have my rating yet. Probably won't for months.

Everyone is very nice for the well wishes. I was doing well up until a month ago and then went down hill again. I'm heading to the hospital now because I'm having issues with my chest and pain through my body. Last year I had thousands of PVS and some tachycardia. Feels like that again. All the plumbing is good but they say my electrical is messed up.

I do think I'm going to end up have to quit my job though. Its just too hard lately to push through. Seems like I have lost my will to push through all the crap I feel. I just feel beaten down and honestly it's not like me.

Thanks again for all the kind words!

Chris

Patze

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Re: New to board
« Reply #10 on: November 16, 2011, 10:42:37 AM »
Hi Chris,

Let me also welcome you to the SJS World and family!  Please do look around the board and use the search engine as you'll find a wealth of information there (located in the upper right hand side of this page).  If you can't find what you're looking for, please do ask away as there is usually someone about that just might be able to help.

I understand the exhaustion, the brain fog, and the pain....oh gosh, the pain and I sure feel for you!  I too work full-time and there are days that I just want to cry because of the pain or the brain fog gets so bad.  On those days, I sometimes have to take it one hour at a time to make it through; not a fun way to live.

Again, welcome and I hope that you find this board as welcoming and friendly as I do.

Take care of yourself -

Patze
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