Sjogren's Syndrome Support Group
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.
I am so discouraged. I just got diagnosed with shingles again. The PHN isn't gone from the last time, and this episode was caught late. My body changed so much when I got shingles the first time. I am young and appear so healthy, and I see others around me who are active and productive. As soon as I tried to increase my work hours, my body revolts and gets shingles. I really thought I was ready to step up. And now I am just dreading the inescapable fact that my body is simply not like other 27 year old bodies. I am getting married in less than two months. What if the pain and fatigue is so bad that I cannot enjoy my wedding day? Will I be able to withstand being without medications in the future when I want to get pregnant? I feel defeated, and that my efforts to eat well and take care of myself haven't been effective. I worked really hard to graduate, to maintain a job, and foster healthy relationships. Having shingles again really feels like mother nature is slapping me in the face. I am so thankful I have this forum to vent, expose my worries, and read others' stories. Thanks for existing.
First off, congratulations on getting married and graduating from college(?), grad school(?) Great accomplishments with all the health problems you have been dealing with.
You're right- your body is not like that of other 27 year olds...it's tougher, and you are more resilient. I do not know many 27 year old people with Sjogren's and shingles who can manage an advanced degree, maintaining a job, friendships, and what sounds to be a an upcoming healthy marriage.
For many of us, friendships or work fall by the wayside, b/c our bodies just don't let us push hard enough to keep plans with friends or not take too many sick days.
So, you have been doing a great job...it's OK if you can't up your work hours right now. It would be OK for any healthy woman not to increase her work hours two months before her wedding :)
Shingles and Sjogren's are no doubt painful diseases...can they be managed? Sometimes. Will you feel pain and fatigue on your wedding day? Well, there's no way to know that. I would take some time to enjoy the planning and dress fittings, and rehearsal dinners (if that is the kind of weeding you are having) and I would take some time to rest and relax, and focus on your future with your new spouse.
Worry about increasing work hours after the wedding. For now, just think of all the good things leading up to your wedding day, and take time to rest your body.
Yes, there is a chance you may feel pain and fatigue on your Wedding Day, but I'm not sure you'll notice it all that much once you start walking down the aisle :)
No need to be so hard on yourself-you are successful, well adjusted and about to get married. Congratulations!
Best, LuLu
If/when you're shingles free for 3-6 months, you might consider getting the vaccine. I'm absolutely going to get it - if I can stay shingle free for 6 months.
I'm on suppression therapy right now. I assume you are too?
I know it's hard - accepting that you're immuno-compromised, but it's a life-challenge, not a life-sentence.
You're alive! That counts for ALOT. You've graduated college! Good for you! AND You're getting married! Whoo-hooo. Good for you. Look at all you've accomplished WITH your life-challenge! That's something to celebrate.
I know it's hard, but the best thing I can do for myself (and this took more time than I'd like to admit to learn) - is to take it one day at a time.
You've got 2 months before your wedding. That's 2 months to be on suppression therapy and heal. Be good to yourself during this time and reduce stress where-ever possible. Either way - you're getting married! And that's wonderful.
As to getting pregnant - I'm sure they can find something that works for you when that time comes,but unless you're planning on getting pregnant right now - focus on healing and one day at a time.
Congratulations for being a immmuno-compromised warrior who's winning!
I swear if I didn't see your name next to the post I would have thought I wrote it! I can relate SO MUCH.
I am 25, getting married next year, and just graduated PA school and started my dream job ( with 16 hr shifts ) - so believe me, I feel you. And the constant worry that if I don't make it in this high stress job because of sjogrens - I will default on my student loans and be thrown in jail HAHA.
I am at constant battle with my body every day. Mornings are torture, I limp around my house until I loosen up. My hands are the worst part. I learned to stop shaking hands with people I meet because the pain of someone shaking my hand would literally make me yell. And then there's the dry eyes and cotton mouth part that is obnoxious.
I've been gluten free for about a month and i'm cutting out dairy this week. Haven't noticed that much of a difference but I'm willing to keep going because I'm desperate. I'm seeing an allergist who is helping me with dietary changes.
Just know and trust there are others out there who feel like you and who are there to listen. You are stronger than you think. :)
Nickle - Thanks to you as well! It's definitely comforting to know there is someone out there whose life is much like my own. I wish we could meet up for coffee! :)
www.nadinecohen.thebiomatcompany.com
Effective Home Remedies for Shingles That Work
Shingles are caused due to the viral infection of Varicella zoster. This same virus is responsible for the outbreak of chicken pox. Commonly known as Herpes Zoster, the infection appears as rashes and blisters on the skin quite similar to the chicken pox but is not contagious as chicken pox. The symptoms are generally observed in the aged people but the young people too get affected by this disease. The painful blisters appear on the face, head and limbs. Sometimes the eyes are affected too and if prompt treatment is not administered it may result in blindness or facial paralysis.
Symptoms
The symptoms almost resemble the chicken pox which can be listed as
1. Appearance of painful blisters and rashes on the face and limbs.
2. Feeling of intense pain, itchiness, burning sensation and numbness.
3. Pain and tenderness may develop in some parts of the body before the outbreak of rashes.
Causes
The virus Varicella zoster is the causative factor of shingles. Other important causes are
1. Weakened body immunity system, especially in the elders.
2. Stress
3. Certain medications
4. Injury
Home Remedies for Shingles
Home remedies are quite effective in reducing the disease within seven days after the blisters get ruptured. The scars also disappear with the prolonged home remedial measures.
1. Application of a paste of 2 powdered aspirin tablets and 2 tablespoons of chloroform on the affected area helps in alleviating the pain.
2. Applying cold compress on the affected areas also provides a soothing effect. A solution of baking soda and water can be very effective as a cold compress.
3. Avoid food rich in amino acids like cereals, grains, nuts, seeds and chocolate.
4. The blisters should not be scratched and should be kept open and dry.
5. Moisten a cotton cloth with a mixture of half cup apple cider vinegar and 2 cups of water. Dab the cotton cloth on the affected areas. It will provide some relief from the painful condition. One can also use Vitamin E oil, cool golden seal, mugwort or peppermint tea to dab on the blisters.
6. Dab the infected blisters with hydrogen peroxide.
7. Application of colloidal powder on the blisters reduces the itching and pain.
8. Apply a mixture of aloe vera gel, raw honey and leek juice on the rashes. This with reduce the pain and help in drying of the scars.
9. A mixture of yoghurt and zinc oxide is applied on the particular nerve few days before to curb the outbreak of the shingles.
10. Eat ample amounts of pear as its juice is rich in antiviral caffeic acid.
Read more about Home Remedies for Shingles. Also know effective Home Remedies for Sterility. Read useful Home Remedies for Sunburn.
Suppression therapy means that the doc (usually a rheumatologist) rx's meds to keep you from contracting shingles AGAIN.
As I said, this is my 8th bout with them, and I've had it. Lupus and Sjorgren's is hard enough!
My doc rx'd 5mg of steroids WITH anti-virals (and its important to take the anti-virals WITH your steroids otherwise you have a greater chance of contracting shingles). In my case I take acyclovir with low dose steroids to keep the shingles at bay.
Just fyi: I took large dosage of valtrex to get over the shingles, but once they disappeared we started with acyclovir in a lower dosage along with steroids.
Make that appt! :)