Author Topic: Hello everyone! (newbie) :)  (Read 2480 times)

Lyswood

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Hello everyone! (newbie) :)
« on: March 19, 2012, 07:30:18 PM »
Hi all -

Just wanted to introduce myself. I found your wonderful group last week and am happy to be a part of it. Great information!

I'm fairly new to Sjogren's, though I suspected I had it for probably 7 years or more before official diagnosis five years ago at 37. The diagnosis came about in a strange way - I had what turned out to be cutaneous amyloidosis, and in trying to figure out what the heck that was, they came across the Sjogren's indicators in the blood tests. I wasn't surprised.

I've since learned that this kind of amyloidosis often occurs with Sjogren's (or at least it's not completely uncommon to have the two together), and that it's unlikely to convert to the systemic - and fatal - version. It took more than a few visits to Mayo Clinic to convince folks I was in the clear, but I'm quite happy I have the simpler version. :)

Anyhoo, my Sjogren's has been pretty straightforward and simple to manage thus far, though new "features," as I like to call them, are creeping in and I feel I need to start paying more attention to things. Had a Raynaud's episode last week and am currently on day 14 of some fairly obnoxious and icky arm/joint pain, but I'm on a good path with diet and supplements with my naturopath and hopefully will continue to manage symptoms well.

I think it's wonderful to have a group like this, where folks can gather for support and answers, and I look forward to participating.

Malyssa


WildThing

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Re: Hello everyone! (newbie) :)
« Reply #1 on: March 19, 2012, 07:34:24 PM »
Hi Lyswood lovely to have you aboard I hope yo will find it useful.  I am not great at giving advice on Sjogrens as my diagnois is a bit of a mess at the minute but I offer support whenever I can.

Meld256

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Re: Hello everyone! (newbie) :)
« Reply #2 on: March 19, 2012, 10:54:01 PM »
Hello, Lyswood

Welcome to Sjogren's World!  ;)

I think you'll find us a group of diverse people with many of the same symptoms, feelings, struggles and joys in common.  There is also a huge amount of information here about nearly anything and everything.
I'm glad to hear your symptoms have been simple to manage and you have a good neuropath to help you.

Please forgive me if I misunderstood you, but I feel I should mention that persons who have a systemic involvement of Sjogren's don't necessarily have what would be considered fatal.  Some us have very mild symptoms and go on with life very well.  Another group have more pronounced issues that affect our daily lives quite a bit. Granted, there are a few who may have serious complications at some time, but just because Sjogren's is systemic doesn't mean it's fatal.  I'm not a medical professional, but that's just my opinion and what I've learned in a few years.

We look forward to hearing more from you. We encourage and support one another. We may not always agree, but we respect each one's opinions and feelings. 
Please feel free to jump in and participate in any way!  And again, Welcome.  ;)

Melinda

cargillwitch

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Re: Hello everyone! (newbie) :)
« Reply #3 on: March 20, 2012, 04:42:04 AM »
MELD256 I believe she was referring to her amyloidosis.
 Not fun stuff for sure!
welcome to a great place to learn and share! I have enjoyed having a dedicated area for all things Sjogrens might through my way.
47 female, Sjogrens ,Raynauds,degenerative disc disease.Rheumatoid Arthritis, gastroparesis.

A66eyroad

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Re: Hello everyone! (newbie) :)
« Reply #4 on: March 20, 2012, 08:39:12 AM »
Welcome, Lyswood!
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.

Lyswood

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Re: Hello everyone! (newbie) :)
« Reply #5 on: March 20, 2012, 09:49:51 PM »
Melinda, there is definitely a misunderstanding - forgive me if my writing was unclear - it was late. =)

What I was saying is that I have a cutaneous version of Amyloidosis, a disease which has a systemic version that is fatal. I was referring to Amyloidosis, not to Sjogren's - I know Sjogren's is not fatal and was by no means implying that.





Please forgive me if I misunderstood you, but I feel I should mention that persons who have a systemic involvement of Sjogren's don't necessarily have what would be considered fatal.  Some us have very mild symptoms and go on with life very well.  Another group have more pronounced issues that affect our daily lives quite a bit. Granted, there are a few who may have serious complications at some time, but just because Sjogren's is systemic doesn't mean it's fatal.  I'm not a medical professional, but that's just my opinion and what I've learned in a few years.

We look forward to hearing more from you. We encourage and support one another. We may not always agree, but we respect each one's opinions and feelings. 
Please feel free to jump in and participate in any way!  And again, Welcome.  ;)

Melinda

Meld256

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Re: Hello everyone! (newbie) :)
« Reply #6 on: March 21, 2012, 01:15:34 AM »
So sorry, Lyswood.  It was late for me, too, and I definitely misunderstood you. 

I try to comprehend totally before I post, but apparently didn't this time.  :-[  It's good to hear your Amyloidosis isn't the systemic type. Thank you for clarifying.

Please keep posting with us, and I hope you enjoy being here.  We're glad to have you.
Melinda

Joe S.

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Re: Hello everyone! (newbie) :)
« Reply #7 on: March 21, 2012, 02:56:55 AM »
Welcome Lyswood,

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

Scottietottie

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Re: Hello everyone! (newbie) :)
« Reply #8 on: March 22, 2012, 08:08:31 AM »
Hi Lyswood  :)

Welcome to Sjogren's world. I hope you find the site useful. It's definitely friendly and supportive.

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!

Lyswood

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Re: Hello everyone! (newbie) :)
« Reply #9 on: March 28, 2012, 06:23:00 PM »
Thanks so much everyone - great group! =)