Author Topic: Yet another newbie  (Read 2887 times)

connie50

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Yet another newbie
« on: August 24, 2012, 03:12:44 PM »
Hello all, 

This is my first post although I have been lurking around for over a year now.

As many others have said before me, I am very glad to have found this site.  It was actually my Rheumy that told me about this site over a year ago.  I have learned so much from all of you.  Thank you.

My story:  I am a 50 year old , female living in the Pacific Northwest.  A little over a year ago , when shaking hands with an older gentleman at my church my ring finger ached.  My thought was how could such an old man have such a strong grip.  It happened again 2 weeks later by that time my finger ached steadily just letting up slightly and if I knocked that finger even slightly, OUCH!  Saw my PCP and she thought of the possibility of arthritis which would not have surprised anyone given the work I do.  I make custom slip covers and upholstery.

Off I went for an X-ray and blood test, good news was no joint damage bad news positive ANA, next stop a visit to my Rheumy.  No diagnosis yet however, probable Sjogren's.  What's that I thought... you guys have taught me a lot in a year.

My symptoms are still mostly annoying, joint pain that comes and goes, tendinitis first in my left shoulder and now in my right elbow, mildly dry eyes, mouth and nose, the fatigue gets to me as I am not to be able to keep up with my work as I used to.

Last week had appt. with Rheumy for another blood draw, this time ANA negative but strongly positive IgM,
reference range 0-20 mine is >150, now watching for APS too ( anti-phospholipid syndrome).  Through all I have learned on this site I know that it is not uncommon for your ANA to go positive and then negative and also that autoimmune disease like to bring their friends.

Also just started on Plaquenil this last week and a baby aspirin just in case I have APS... I was offered Plaquenil
on two other occasions and finally the Rheumy asked me why I keep refusing.  He said he thought I was in denial and not to let my denial get in the way of treatment (gotta love this guy) I told him I was waiting to hear them say they made a mistake on my blood test and I don't have an autoimmune disease, or that it's just peri-menopause.  The look on his face said it all.

Thanks for all you do, I probably won't have much to offer at this point as I am still learning myself.


iraisin

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Re: Yet another newbie
« Reply #1 on: August 24, 2012, 03:33:40 PM »
Hi Connie, Welcome.

Yes, denial is bliss...until it hurts.

It is great that you can learn so much here. The place is a Godsend for sure.

stay strong and diligent!

Carolina

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Re: Yet another newbie
« Reply #2 on: August 24, 2012, 03:35:24 PM »
Hi Connie,

The key is getting the proper meds, treatments, rest, and support.  The diagnosis?  eh?  sometimes it helps and sometimes it doesn't.

Welcome.

Keep us posted.

Hugs

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

jazzlover

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Re: Yet another newbie
« Reply #3 on: August 24, 2012, 05:21:18 PM »
WELCOME!!!! Glad you have a good rheumy! :)
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

EllaBlue

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Re: Yet another newbie
« Reply #4 on: August 24, 2012, 05:30:44 PM »
Hi Connie WELCOME!! My Rheumy of 30 years retired and I was a year without anyone in hopes that just maybe he could come back. He was so sick, so that did not happen.
I met my new Rheumy this past Tuesday. BRILLIANT and he took forever with me.
His words were this. "Your plaquenil is your life insurance policy."
Where before (Ella bows head) I would stop and start my plaquenil because of some side effects (NOT A GOOD IDEA) I am not ready to listen!  Never will I stop it again!

Please, please Connie, listen to your doctor and do as he says. Early treatment can mean SO much. For instance with my autonomic neuropathy, that can do great damage to the periphiel nerves. SO why do I want that right? The plaquenil is MY FIGHTER!   I hope it is not too later.

Please again, do everything you can to take the BEST care of you that you can. Listen, and yes of course ask questions and always be your own health advocate. BUT always come out of denial cause that just is NOT a river in Egypt!  LOL  Seriously, we want you around for a long time...so do as your doctor says.

This is a GREAT place for support. And everyone is SO smart here. I am fairly new myself and I feel SO blessed to have found this site and to have new friends that understand!!!!
(((Hugs)))
EllaBlue

shellthebell

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Re: Yet another newbie
« Reply #5 on: August 24, 2012, 08:12:55 PM »
Welcome Connie!

Bucky

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Re: Yet another newbie
« Reply #6 on: August 24, 2012, 09:24:17 PM »
Hi Connie - welcome!   :D  We're always glad when "lurkers" decide to join the forum and become active members.

Your Rheumy sounds like a keeper.  The key is always to have a doctor that works WITH you as a team.

In my experience with Plaquenil, for some reason, when I have milk with the pill or shortly after, I get a lot of gassiness.  When I just take it with water & food - no problem.  Some people find taking their pill and yogurt works for them too.  Everyone is different and you have to find what works for YOU.

As you've probably read here in the past, don't be surprised if it takes six months or so for you to start to feel the benefits of Plaquenil.

If you haven't seen an Ophthalmologist, I would suggest you see one.  Your eyes might be dryer than you think - you might have just become use to it.  That will also give the Optho a baseline exam for you since you are starting on Plaquenil.  Preservative free eye drops (OTC) are very soothing to dry eyes.   :)

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!)

susanep

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Re: Yet another newbie
« Reply #7 on: August 24, 2012, 09:35:08 PM »
Welcome Connie, and this is a wonderful place to be. I am glad your Dr. takes time with you, and is on top of it. That means so much.

You have already added a lot here by just coming by, and telling us where you are with all of this.

Our experiences help each other.

Take Care, and hope to see you again.

susanep :)
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

connie50

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Re: Yet another newbie
« Reply #8 on: August 26, 2012, 10:02:23 AM »
Thank you for the warm welcome.

I think I was/am in denial is that I have always been so healthy, never had to go to doctors
For anything, not even a cold.  It's hard for me to accept that something isn't right.  And also worried
About whats next.

I am scheduled to go to the opthomologist next month for a Schirmers test and Plaquenil monitoring. Thanks for the advise Bucky.

I wish my husband understood better.  He is one that does not know what to do if he can't fix it.
In my opinion he is in bigger denial then I am,  he thinks one should not take medication until it's
Absolutely necessary or almost too late.  We will have to disagree there.  I have learned in the this short amount of time not to tell him more then he can handle.  He knows I'm not a whiner, lazy or
A wimp to pain.  So if I say I'm too tired or my feet hurt he knows I mean it.



Joe S.

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Re: Yet another newbie
« Reply #9 on: August 26, 2012, 10:51:46 AM »
Sorry I missed you. I thought I had provided my standard post. Spoon theory will help you and those you know what you are going through.

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: Yet another newbie
« Reply #10 on: August 26, 2012, 11:49:28 AM »
Hi Connie  :)

Welcome to Sjogren's world. There is no point expending energy wondering what MAY happen - because it may not. Sjogren's is incredibly individual. There is no definite pattern or progression. With some progression is very slow and others become really ill but there is no predicting it so it is important to take each day as it comes and Joe has some good advice! I've had the condition for about 30 years now and am still working. I had periods of remission during that time.

Take care - scottie  :)
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star723

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Re: Yet another newbie
« Reply #11 on: August 26, 2012, 02:20:56 PM »
welcome to a great place~  :)

artistangie

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Re: Yet another newbie
« Reply #12 on: August 26, 2012, 02:59:28 PM »
Hi Connie  :)