Author Topic: How do you cope?  (Read 252 times)

Deseree

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How do you cope?
« on: November 05, 2018, 10:54:18 AM »
Hello again, I recently just had my early Sjogrens test sent in to IMMCO and am awaiting the results. Everyone I know is convinced that I have health anxiety and not Sjogrens, but today I woke up with dry eyelids that stuck closed and my nose and sinuses we bone dry despite my use of a humidifier every night. My skin had started to get dry on my nose lately too. I am terribly afraid that I have Sjogrens, and I just don't know how I will be able to go on with my life if this test comes back positive.

I am only 30, and I had so much more I wanted to do in life and if I have Sjogrens, it's progressed rapidly in just three months. I fear I only have a few years at most before it disables me. How do you guys cope? I can't stand this. There are days I literally want to die to escape this heck. I'm not on any prescriptions yet as my doctors want to know what's going on first. I want relief so bad. Do you guys still enjoy your lives? Can you still have fun, function normally, etc? I am constantly aware of the dryness and it's interfering with my life. I just want to know that I can still have a good life if I have this condition, but I'm afraid that is not possible. Sorry to be so depressing, I'm just so tired of this.
30 year old female
No diagnosis as of yet. Dry mouth, nose, throat, and eyes. Currently taking ubiquinol.

jazzlover

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Re: How do you cope?
« Reply #1 on: November 05, 2018, 01:10:12 PM »
Get some help for the symptoms and see how much your life improves!

I'm 67 and I know I've had this for about 10-15 years. I do very well .. but I have other health problems that are worse than Sjogren's. I guess it's all relative.

I get great relief from eye plugs.

Be sure to check for side effects of any meds you are on. Dry mouth is usually listed on most drugs.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

bclark18

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Re: How do you cope?
« Reply #2 on: November 05, 2018, 06:04:36 PM »
i am 17 we caught it when i was 13 i recently have been getting joint pain but i think if you keep good heath and do all u can ( Natural remedy's and so on ) sjogrenes shouldn't disable you to the point where u cant go or do anything but keeping physically active will also help alot try not to just sit around which sounds silly but it really does help

Joe S.

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Re: How do you cope?
« Reply #3 on: November 06, 2018, 02:37:53 AM »
When I was in boy scouts at 11 I knew that I had dry mouth and dry skin (family issues). I am 65 now and can tell you that you can have a long and full life. Yes, things are a bit harder. I have used supplements to manage the symptoms for many years.
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Maria3667

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Re: How do you cope?
« Reply #4 on: November 06, 2018, 04:44:38 AM »
Do you guys still enjoy your lives? Can you still have fun, function normally, etc? I am constantly aware of the dryness and it's interfering with my life.

Hi Deseree,
I was also around 30 when this disease struck. After a while you're prepared: always have your emergency kit on hand: eye drops, pilocarpine, Vaseline, band aid, pain killers, umbrella (against direct sunlight), etc.

Being prepared makes it more manageable. Looking back I can say I have had wonderful years, but also some detrimental moments (eye infections, dental problems due to drying issues, etc.) As profit to your own health, try to find supplements or drugs that will aid you. For every patient it's an individual approach.

For me, the secondary effects like anxiety and depression are hardest to bare. However, it's comforting to know that 'healthy' people can also endure hardships. No life isn't fair. The best approach is to accept the facts and make the best of things!

P.S. The support of this forum is worth it's bytes in gold...

Good luck!

Maria
50. Lyme's (1998), Sjogren's (2003), hypothyroidism (2004), osteoarthritis (2016), DES-daughter, GAD. Pilocarpine, natural thyroid hormones, 25mg quetiapine, low dose testosterone, 2.5 mg dhea, supplements. Endometriosis, cherry angiomas, macules. Allergies: nickle, methylisothiazolinone, latex

Carolina

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Re: How do you cope?
« Reply #5 on: November 06, 2018, 05:24:51 PM »
Dear Deseree,   I read so much fear and thinking the worst can happen in your post.   We all experience that to some extent.  Some times deep breathing and relaxation, listening to music, reading something pleasant, will help.

1.  So my first thought for you is that when I find myself going over and over the past, or the present or even the future and creating scenarios full of fear or regret or pain, I have a hard time realizing that I don't have to do that!  It is worst at night, of course.  It is interesting that when my mind is exploring internally, I am really in what I call the 'squirrel cage', where my mind is going round and round on the spinning wheel in the cage.

I have to realize that thinking NOTHING, which is meditation and relaxation or focused breathing, is preferable to staying in my head.  That is hard for me, because I like to stay in my head, even when it is really not good for me.  But as soon as I focus on my breath....I come into my body and leave my frantic mind to rest.

2.  And a second thought for you is that the majority of people with Sjogren's deal with the dryness, find meds, lotions, spray, lozenges, humidifiers, and other remedies, and go on with their lives.  Dancing, gardening, working, marrying, raising children, pursuing work they enjoy, or perhaps work necessary to support their life.  Most people with Sjogren's Symptoms don't have a diagnosis for years, and sometimes never.  Sjogren's Syndrome is NOT usually a sentence to dire health issues.

3.  Deseree, when you read our posts, you are reading the very small percentage of those with Immune Disorders who do indeed have progression and complexity in their health. It would be good to take a break from reading all the posts every day.

4.  I assume you are seeing a counselor.  I have always had a counselor in my life: psychiatrist, psychologist, trained social worker.  I have seen my current counselor for 8 years now, every week.

5.  In addition I  take an antidepressant.  I have taken various antidepressants with almost no break since the late 1980's when Prozac came on the market.

6.  I also have a medication, Salagen, to increase my saliva and tear film.  There are two such medications to choose from, and I always carry a bottle of water, and preservative free eye drops.

7.  When you must approach your symptoms, the key is not to worry about diagnosis, but to find ways to relieve the symptoms.

8. We all react differently to medications, so a period of trial an error is how to find what works.
Most medications are started at very low doses.  And remember you can always stop most medications with no complications.

9. Exercise is crucial.  It helps both mind and body.  I even have one condition that disappears when I do mild exercise in the water.  Find something you LIKE and do it gently and lovingly.

I believe that these suggestions could be of use to you.  As always take what you need and leave the rest. 

Regards, Elaine
« Last Edit: November 06, 2018, 05:31:19 PM by Carolina »
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Deseree

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Re: How do you cope?
« Reply #6 on: November 06, 2018, 09:14:55 PM »
Thank you everyone for your responses. It helps so much to connect with others and know I'm not alone.

Carolina, thank you so much for your kind words and advice, this helped me feel much better and calm some of my anxiety!
30 year old female
No diagnosis as of yet. Dry mouth, nose, throat, and eyes. Currently taking ubiquinol.

Bigleyj

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Re: How do you cope?
« Reply #7 on: November 07, 2018, 03:02:42 AM »
Hi Deseree,

This forum is great, I'm glad you found it.  It's terribly frightening I know, you are not alone. We are here.

Try to relax as much as possible, it's hard. If you are like me you will mourn the old you but then you will come to terms with it. I had lots of different feelings and still do. Take your time and yes a good counsellor would be good. 

I find that I now relish in the small good things in life. The things that healthy people don't notice so much.

This forum is the perfect place for venting, asking questions and feeling supported.

Take care and keep smiling,
Jo 😊

Female, 44 Yrs, Victoria, Australia. 
Diagnosed SJS Nov 2014, diagnosed skin-only Lupus Dec 2014, overactive thyroid medicated since 2011.
 plaquenil, carbimazole, escitalopram (esipram), second generation oral saliwell stent, vitamin D.
Came off low dose Valium mid-2015 😀

Ohiocat

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Re: How do you cope?
« Reply #8 on: November 07, 2018, 03:46:44 AM »
Go and read spoon theory.   You learn to figure out how many spoons you have to spend and then allocate them to what is important to do.   

You also learn not to compare your activities to others-- and do what works for you

female 50+, no thyroid - levthyroxin 125mcg; Primary Sjogrens:  Dry mouth; Dry eyes-thera tears, Restasis twice daily;