Author Topic: New to the Community  (Read 2960 times)

hblake73

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New to the Community
« on: August 01, 2010, 10:39:30 AM »
I am a 37-yr-old mother of a 4-yr-old boy. I was diagnosed with Sjogren's almost two years ago. I went in for a routine physical in which my ANA was elevated and further tests were ordered where a posititive SSA prompted a visit to a rheumatologist. He was old and very gruff and scared the crap out of me. I ended up on medication for depression and anxiety. Everything about Sjogren's scared me. He gave me pilocarpine for my dry mouth, but I can't take it - it causes heart palpitations. My dry eyes and mouth are only a minor bother at this point. But every pain sends me into "what if I have..." this or that. I went to a second rheumatologist and he looked at me and said maybe it isn't Sjogren's. You are young and healthy and I suggest you forget about it. So I'm a little confused as to what I should be doing! If anyone knows a good Sjogren's doctor in Houston I'd like to know. I hate going to doctors and taking medicine and am open to natural remedies, although skeptical of them at the same time.

I have pain in my parotid gland area whenever I suck on candy or sunflower seeds - bad enough I spit out whatever is in my mouth. My jaw gets a little sore sometimes. My eyes are driest in the morning. My joints are sore occasionally.

I feel like a burden to my husband who has to keep a "regular" job in order for us to have medical insurance. He'd rather be in the golf industry, his passion, but most often those jobs do not offer health insurance.

Sorry for the long post, but it's me in a nutshell... which is exactly where I belong  ;)

~ Heather

Alana

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Re: New to the Community
« Reply #1 on: August 01, 2010, 11:03:44 AM »
Hi Heather!  I am new to this forum as well.  I am 39 years old and I have been diagnosed with  SJS since 1996.  SJS is very confusing and unpredictable!  I wish I knew of a good Rheumy in Houston to help you out.  A good doctor is key to understanding and dealing with your condition.  I have been blessed with a very compassionate doctor who always listens.  I was on a list of medications for the first 10 years.  I, against doctor's orders, stopped them all.  I did not find they gave much relief and caused other problems such as the steroids contributing to my osteoporosis.  But, that's me. Lots of people benefit from the long term treatment of meds.   I take meds when I have to address a flare up and then get off once feeling well.   I still go 4 times a year for blood work and "the lecture" he lovingly gives.    Just listen to your body!!!  Don't freak out at every little thing (been there and done that) it will drive you batty!!! Keep your head up and take it in stride!!!  YOU WILL BE FINE!!! Deal with each problem as it comes.  Oh-the internet sites that diagnose problems will truly mess with your mind!!!!! Avoid them and you will be much happier!!!   Eat well, exercise, let go and let God!

Be well~~

Alana   

Scottietottie

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Re: New to the Community
« Reply #2 on: August 01, 2010, 11:18:37 AM »
Hi Heather  :)

Welcome to Sjogren's world.

Sjogren's is a very individual disease. It's interminable rather than terminal. Some people have it mildly and some people get really ill with it and there is no predicting who will do what. There is no point worrying about what may never happen! Take each day as it comes.

Often to begin with people are prescribed Plaquenil (hydroxychloroquine) because it is meant to slow down the progression (which is usually slow anyway) of the disease, as well as to help with aches and pains and fatigue.

Otherwise symptoms are treated as they come up. You may find that you collect more 'ologists' than you want to!

Hope you find the site useful.

Take care - Scottie  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

lynnmarie219

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Re: New to the Community
« Reply #3 on: August 01, 2010, 12:31:06 PM »
Hi Heather and welcome to Sjogrens World!

You mention that you eyes and mouth are your main concerns right now....have you tried some of the over the counter preservative free eye drops or the products for dry mouth? Many of here use the Biotene products such as the mouthwash, toothpaste or gel for the dry mouth symptoms but there are others out there as well......a lot of this is just a trial and error to see what works best for you!

Read all you can here and feel free to come back as often as you want to ask questions, get information, make friends, vent and laugh. This is a safe place for all of that.

Carolina

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Re: New to the Community
« Reply #4 on: August 01, 2010, 01:00:52 PM »
Hi, Heather,

Welcome to Team Sjogren's.  Take it easy, relax, we all learn as we go along.

This condition touches everyone differently, and many of the people here have a bunch of different conditions, as well.

You will read here about things that may never ever happen to you, so don't worry.

One of the big studies in Japan found that when a large study group was tested, 97% of the people in the study had Sjogren's and didn't even know it!    They were much older people with other problems, however. 

When I was diagnosed, I read up on Sjogren's, and since the dry eyes and mouth were OK when treated, I was just fine for a very long time.   And I don't even really test positive for Sjogren's, never sero positive.  but my Rheumatologist felt that the symptoms are more important than the test results.

The Rheumatologist who told you not to worry was responding more to your symptoms than your tests, as well.  In general, Sjogren's is part of a bunch of autoimmune conditions which are mostly treated symptomatically.  And it doesn't help to worry about any of them, Heather.   

You will deal with stuff as it shows up, IF IT SHOWS UP.   Having that Sjogren's diagnosis in your 'back pocket' as it were, gives you something to reference if and when anything changes.

I don't think anyone likes going to doctors (just the time is a burden) or taking medications. and Skepticism is healthy.   Medications for autoimmune conditions tend to mostly treat the symptoms, AND to affect everyone differently.   You will know WHEN you want to try something, IF you do, and you will check it out.  anything can be tried out and then stopped if it isn't right for you.

You will be able to use this forum to sound off, ask questions, share concerns, and generally touch base with people one or two of whom will know exactly what you're going through, and all of whom will willingly listen and support you.

Again, welcome.  Live your life, enjoy your family.   :-)

Keep us posted.

Kisses

Carolina  (Elaine)



Female-Elaine,78-CVID-pSJS-IC-PN-CAD-Osteoarth-SFN-Knee/Shoulder Degeneration-SIBO-Act.Purpura-Tinitus-Meniere's-Hiatal Hernia-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Omega 3-Naltrexone-Esomeprazol

hblake73

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Re: New to the Community
« Reply #5 on: August 01, 2010, 07:27:56 PM »
THANKS so much to everyone for the kind words and advice. It really helps! Especially coming from people who also have Sjogren's. Family and friends are great, but don't always understand.

SLEEPY101

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Re: New to the Community
« Reply #6 on: August 13, 2010, 06:00:42 PM »
Welcome!

Whenever I come home from a disapointing Dr appointment I run straight to the computer. I get encouragment and advice from my SJS friends that helps me explain my situation better to my friends and family. They don't always understand but there are a lot of friends on this site that do:)

Take Care

Joe S.

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Re: New to the Community
« Reply #7 on: August 13, 2010, 06:46:07 PM »
Welcome. You will find a lot of information here. Some of us have posted what meds we are on and what Dx's have been given us in our signatures.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism