Author Topic: 26 yrs old/recently diagnosed; looking for support  (Read 1790 times)

jenny7

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26 yrs old/recently diagnosed; looking for support
« on: August 19, 2012, 02:32:45 PM »
Hello All,

So happy to have run across this page and looking forward to connecting with others who share the same experiences.  After about a year of testing, I was diagnosed with Sjogren's Syndrome about 6 months ago with the help of continuous blood tests and a highly positive lip biopsy.  Since diagnosis, I've been on Plaquenil and have experienced much relief to the symptoms I had before; immense swelling and pain in knees, feet, hands, etc. which made it difficult to even walk some days, tingling in my right leg and arm each night, extreme fatique, etc. 

I still have dry eyes and mouth, and still am tired most days, although my doctor told me that the Plaquenil could still kick in and help this over time.  So overall, the medication has seemed to help.  I also take a dietary supplement each night that I ran across at a health food store: New Chapter Supercritical Omega-7 softgel capsules.  The store owner said others with SS said they help with dryness in the eyes and mouth.  It could completely be in my head but I feel they could be helping some, as when I don't take them in a few days I can tell a difference.

I've started considering doing a gluten-free diet to see if it helps at all as I've seen a lot of posts by others talking positively about it.  Does anyone have any feedback on this?

Also, on a more personal note, I haven't dated at all over the past year and a half and I'm wondering if subconsciously, dealing with this all has effected my willingness to do so.  Any others experience anything of this sort?

This has definitely been an emotional journey and I'm still trying to adjust, but I always try to remain as positive as possible!  Looking forward to connecting with you guys!

Jen

iraisin

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Re: 26 yrs old/recently diagnosed; looking for support
« Reply #1 on: August 19, 2012, 03:49:03 PM »
Hi Jen,

Welcome. Glad you're getting some relief with the Plaquenil - any little bit helps right!

Diet mods do help, but I think just because it's healthier living anyway. There are a few diets to research if you're looking to make a change: vegan, anti-inflamatory, gluten-free, juicing, etc. Good luck with whichever one you choose. I think the biggest part and largest hurtle with any of them is the mental aspect and just accepting this is a new way of life.

I understand your dating issue. I have only recently learned about my SJS. Before that, I wanted to focus on raising my boys - they are raised now. Then it was, I couldn't keep up with anyone else in my life. I still feel that way actually. Then I went thru the "why would I invite someone I actually liked into this mess?". Still kinda feel that way too.

But I'm softening up to the idea. We should all be/feel loved. This is a lonely disease and it's hard to get by without love, affection, understanding, and support. So, I am now accepting applications. HA!

Just decide what kind of person you want, what compromises you are willing to make, and what you want your future to look like (realistically). Then spread your wings.

I am taking my sweet time - which I'm learning to do in almost every aspect of my life - unless it's about earning money. And even then, I may reject a job or renegotiate the deadline.

The journey is emotional. It takes a lot to get your head around it - then it changes on you.

Be merciful to yourself. Pace yourself appropriately. Don't punish yourself for what you can't do anymore and try to find the new things that make you happy that you can keep up with. You are not being punished - sometimes bad things happen to good people randomly. Love the new you, once you figure out what that is.

Stress management, self acceptance, self love, forgiving others (as you will get frustrated with their lack of support and understanding for your plight), and enjoying the little things you are gifted with each day - start looking for those little things - they matter.

And come here, whenever you need. We'll be here.

Take care,
iraisin

Katybarstool

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Re: 26 yrs old/recently diagnosed; looking for support
« Reply #2 on: August 20, 2012, 01:19:52 PM »
Hi Jen

Yes, SJS can be life changing - and can make you re-evaluate what you want from life. But, although many of us on the forum are older than you, there are several others your age. I'm sure they'll pop along and welcome you soon. And, of us older ones, many of us can track our symptoms back to our teens or younger. Yet, we have had fulfilling lives, so keep that in mind, and enjoy yourself as much as you can.

Welcome to the family.

Hugs
Kathyx

Joe S.

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  • Fibro, Sjs, RA, CNS, Diabetes, TIA's, ADHD, ptsd
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Re: 26 yrs old/recently diagnosed; looking for support
« Reply #3 on: August 20, 2012, 03:55:50 PM »
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

valene2009

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Re: 26 yrs old/recently diagnosed; looking for support
« Reply #4 on: August 20, 2012, 06:32:17 PM »
Jen
im 37 and single.. finally had a few dates this summer..yeah!  nothing great but still 3 dif guys..all setups but still...anyway.. i hadnt dated for over 4 years -since i had gotten sick so it was a big deal to me..

i right away told them what i had--mostly sensitive eyes in case i needed the drops etc... my sis who is a social worker said so many people have illnesses and not to let it stop me..she said if i have to put drops in so what--if someone has an issue with it they are not for me.also.. she said not to make a big deal about my illness esp at first and then things should be fine...

it is hard... esp todya i was in my pjs and robe all day.. so sick..but other days i am fine and can do things....
good luck.hang in there. i was diagnosed at 21 but didnt think i had it..it came on stron at 32...

keep us posted.

Sleepy In Seattle

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Re: 26 yrs old/recently diagnosed; looking for support
« Reply #5 on: August 20, 2012, 06:34:40 PM »
Hello and welcome!

Being gluten-and-dairy-free helps me quite a bit (I have Lupus as well as Sjs), unfortunately....LOL...I LOVE cheese!!!!! But it does make me feel cruddy. I do okay with goat and sheep products.

Going gluten-free is not easy, especially at first - but you do get used to it. if you are super-sensitive, you may notice a difference after only a few days GF - for me, it took closer to three months. It happened gradually, but then when I tried eating gluten again, WOW - did I feel horrible! Same with dairy. The symptoms subsided so gradually I didn't really notice, but they came back with a vengeance when I ate wheat or cow's-milk-dairy.

The trick with GF is to use the specialized GF products (breads, pastas, etc) to kind of wean yourself off...but they are expensive, and not very good. I have now found that I basically eat a "paleo" type diet - not because I try to, but because it's just what makes me feel best. I feel best not just when I eat gluten-free, but when I eat mostly grain-free - ALL grains - though obviously wheat is what I am most sensitive to.

I refuse to give up sugar. Or coffee. I am afraid they also make me feel crappy, but it's hard enough to give up wheat and dairy and I need SOME vices, LOL....

Maybe someday....

As far as dating, I dunno. I have been married for 19 years as of tomorrow! But look at it this way - lots of people have issues that are FAR more serious in their effects on a relationship - alcoholism, drug use, emotional instability, STD's, you name it....! Would you discriminate against somebody who had diabetes, or allergies? Probably not - probably you'd say "if it's the right person, I'd support him/her through whatever crap they have to go through with it...", right? Well this stuff is no different. I think it's always good to be cautious when dating, but don't let the Sjs stop you....you are still YOU. :-)
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

valene2009

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Re: 26 yrs old/recently diagnosed; looking for support
« Reply #6 on: August 20, 2012, 07:37:28 PM »
hey Jen

i just reread what u wrote.. i am going to try those omega 7 supplmeents.. i know omega 7 is in cocounut milk which is sup to be great for u! i may try... do u take omega 3 as well??  good luck with the boys... i am there with ya.... dating in genernal is just hard! 

val :)