Author Topic: Hello from a Newbie....  (Read 1603 times)

Sleepy In Seattle

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Hello from a Newbie....
« on: March 13, 2012, 12:46:59 PM »
Hi folks!!!

I just wanted to introduce myself - I am a 43-year-old mom and part-time horse trainer who lives in the Pacific Northwest.

After having all sorts of lingering health issues for many years, this last fall I was diagnosed with Sjogren's (which I had never heard of!), Lupus, Raynaud's, and APS. I also have migraines about 10-15 times a year. They're all in the mild-to-moderate range so far - except for a few bad flares - and I'm hoping that Plaquenil, NSAIDs, and careful lifestyle management can help them stay that way. My Rheumatologist thinks that my immune response is partially triggered by gluten (wheat in particular), although I don't have Celiac - so I am on a wheat-free diet. It does seem to help, though I MISS MY DONUTS!!!!  ::)

I joined a Lupus forum to learn about the lupus stuff, and recently found this forum on Sjogren's. I don't know how to tell my Lupus symptoms from the Sjogren's - and I'm not sure it even matters...but the more I know about both of them, the better off I'll be, I figure.

So thanks in advance for help and information....I have read through some of the forum posts and I think I will find good company here - and hope I can return the favor. I wish none of us were sick at all, but it does help to know I'm not the only one going through this stuff.  8)

So anyway - HELLO!!!  ;D
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc
GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day

A66eyroad

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Re: Hello from a Newbie....
« Reply #1 on: March 13, 2012, 01:13:33 PM »
Hi, Sleepy in Seattle! What a fun screen name!

I want to welcome you to this wonderful group of people! I'm glad you found us, but sorry you had to look. The good news is that you've got a diagnosis and can now get treatment. That's a really good thing!

I understand about never having heard of Sjogren's --- I actually happened upon the diagnosis when I was reading the Merck Manual of Nursing because I thought I might have Lupus. I'm the one who brought the diagnosis to my doctor's attention. Now I find that the folks on this forum know more than both my PCP and my rheumy!  :)

A favorite feature in this forum is the search box in the upper right-hand corner. You can plug in any kind of term and get a wealth of information! Of course, you're always welcome to ask anything. No question is too big or too small! 

It won't be long before you'll see a question someone else has posted and you'll be able to reach out and help someone yourself. That's another great thing about this forum -- always someone to help you, and always someone you can help. Since we're from all over the globe, there's almost always someone logged in.

There's lots of good info on the web about Sjogren's. You might want to start here:  http://www.sjogrens.org/. (If you decide to buy a book from Amazon, you can buy it through a link on this forum and Sjogren's World gets a portion of the proceeds.)

Are you taking any medications? Some of us post our dx's and meds in our signature. (You can click on your profile --- the little person on the left-hand side of your posting under your screen name -- and add stuff there.) I love my Plaquenil, and my cauterized tear ducts have made my life so much better.

One of my favorite quotes is from Ayn Rand:   "If you don't know, the thing to do is not to get scared, but to learn." It sounds to me like you're already doing just that!
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.

Joe S.

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Re: Hello from a Newbie....
« Reply #2 on: March 13, 2012, 02:30:30 PM »
Welcome Sleepy,

While I am glad that you found us, I do not like it than anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogren’s – Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read “Spoon Theory” on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Don’t Panic – Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book “Feeling Good” by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe – For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate – Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think “I am” as you breathe out, think “calm”. Repeat as needed. Meditation can be as good as sleep.

With Sjogren’s we tend to have a lot of infections so wear your “polar fleece mumps scarf” to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three S’s of Sjogrens.
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

Bucky

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Re: Hello from a Newbie....
« Reply #3 on: March 13, 2012, 02:33:51 PM »
Hi Sleepy In Seattle - welcome!   ;D

We have several members who have a combination dx of Lupus & Sjogren's.  From what I can gather, the treatment for both of them is pretty much the same.

As A66eyroad mentioned, we're a worldwide community of predominately female, but we do have male members too.  We come in a wide range of ages, backgrounds, degrees of Sjogren's, etc. - yet, we are all connected by our desire to learn more about Sjogren's and to connect with others who are experiencing living with Sjogren's or those who are still being tested for "possible" Sjogren's.

There's a lot of non-Sjogren's related threads in our Social Board where we celebrate birthdays, anniversaries, new babies, new jobs, new pets, jokes, laughter and occasionally tears.

With any disease, I think the better outlook we have on life and all it throws our way - the better we are equipped to handle the disease.  Knowledge is power, so learn all you can about Sjogren's - but, don't let everything you read discourage you.  Sjogren's affects each individual differently - some have only minor symptoms, yet others have more involvement.

You have to be your own health advocate - no one cares more about you and your health, than you!  If doctors aren't listening or offering you any solutions to your symptoms, keep looking until you find someone who will listen and treat you.

If you are lucky to find doctors who work WITH you as a team . . . they're keepers . . . hang on to them!   ;D

Again, welcome.

Bucky
Come sit a spell and join in live chat - we serve non-fattening, zero calorie goodies while discussing all kinds of things.  ;D

http://www.sjogrensworld.org/chats.htm   (find our chat times here!)

Sleepy In Seattle

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Re: Hello from a Newbie....
« Reply #4 on: March 13, 2012, 03:01:06 PM »
Thank you, folks!

I do take a bunch of vitamins - some on the advice of doctors and some because of my own research - but I always make sure to tell my doctor what I am taking, and why. He seems really good - he'll tell me if something might be harmful, but is willing to let me try things just to see what happens. He readily admits that A-I disease is still largely a mystery, and affects everyone differently. So basically - if it's not contraindicated and it seems to help, he's all for it!

Each day I take an excellent multivitamin, 2000-3000iu Vitamin D (I was on prescription strength for a long time to get my levels up, but they seem to be staying steady with this level of daily supplement), 1000mg Vitamin C, a B-vitamin complex plus extra B12 (my levels on that tend to be pretty low).

On the advice of my neurologist, I take CoQ10, no-flush Niacin, Magnesium Glycinate, 25mg DHEA, and several fish oil (Omega 3& 6).

On my own research, I take a good probiotic and several Zyflamend capsules (herbal anti-inflammatories such as tumeric, ginger, rosemary, etc).

If I feel like I am getting a virus, I gargle with elderberry syrup, which seems to help a lot.

I chew a lot of xylitol gum, and use non-drying toothpastes and mouthwashes. If my dry mouth problem is flaring up badly, I use an oral lozenge like Xylimelts when I sleep. That really helps a lot, and doesn't seem to upset my stomach ever, even though apparently it does that to some people.

If anybody has any other suggestions, let me know! :)

I have been on the Plaquenil for about 6 months now, and it definitely IS helping. I hate taking drugs, and "forgot" to take it for a few days on several occasions, and started to flare up just in those few days - so I know it's working to supress the autoimmune disease. (By "forget" I don't mean that I deliberately didn't take it - I really did forget - but I think it was sort of a "motivated memory lapse" because I hate, hate, HATE being dependent on a drug!!!!).

Oh - and I take 325mg aspirin once a day for the clotting problems that come with APS. I have had some clots in my retinas, and we're hoping that if I drink lots of liquids and take that aspirin, that'll be enough. If not, I'll go to 2 aspirin a day and see how my stomach does. So far so good. I would REALLY like to avoid taking Coumadin or some other pain-in-the-neck, scary blood thinners.

Thanks for the input...I do hate having these things, but it's WONDERFUL to finally know what's going on, and to get some help. I feel MUCH better about life now than I did 6 months ago!!!!!:D
« Last Edit: March 13, 2012, 03:04:38 PM by Sleepy In Seattle »
Sjogren's, Lupus, Raynaud's, APS
Fatigue, Brain Fog, Autoimmune Hearing Loss, joint/muscle pain, dry mouth, clots in retina, etc
GF, "semi-Paleo" diet, Supplements, Plaquenil 400mg/day, Aspirin 325mg/day (for APS), Methotrexate 7mg/2x per week, Prednisone 3.5mg/day

eye2dry

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Re: Hello from a Newbie....
« Reply #5 on: March 13, 2012, 06:15:07 PM »
Howdy Sleepy in Seattle.

Sorry you've been given the diagnosis of sjogrens, lupus and APS.
Glad your getting help.

I hear you on the prescription part, I too in the very beginning resisted the Plaquenil but it helps me.

sjogrens is verrrrrrry interesting and mysterious.

eye2dry

Meld256

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Re: Hello from a Newbie....
« Reply #6 on: March 13, 2012, 08:31:52 PM »
Hi Sleepy in Seattle (cute name)  ;)

Let me also welcome you to our little group!  Actually, it's a world-wide group, but it's warm and welcoming like a small family.

You've received such excellent responses from Abbey, Bucky and Joe there's not much I can add. I'll agree that it can be such a huge relief to finally know what's causing our symptoms.  When we know, we can be treated and sounds as if you're doing all you can along with your docs.

As said, treatments for Lupus and Sjogren's can be very similar, and many people have an overlap of both along with a little of this and that. We say that these diseases like to bring along their "friends" like RA, Fibromyalgia and the like.

We discuss all kinds of things here, we comfort, encourage and support one another, and have a cry and a laugh.  We respect everyone's opinions, and feelings.  So it's a pretty cool bunch!

We look forward to hearing more from you; feel free to jump in anywhere you like.
Again, Welcome!

Melinda

Patze

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Re: Hello from a Newbie....
« Reply #7 on: March 18, 2012, 04:29:41 PM »
Hi Sleepy in Seattle,

Let me also welcome you to the SJS World and family!

I also hope that you find the board as wonderful and welcoming as I have all these years.



Patze
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