Archive for the ‘autoimmune disease’ Category

Today is World Sjogren’s Syndrome Day. Most people probably had never heard of this disease until Venus Williams was diagnosed with it last year. Even then, it probably passed through minds without another thought.

Unless you’re one of the people struggling with an undiagnosed illness. Maybe reading about this strange syndrome made you perk up a little because your symptoms seem similar. Maybe it took you to your doctor who might have only heard about Sjogren’s Syndrome on passing in medical school and thinks it only has to do with dry eye and dry mouth. Maybe you got lucky and your doctor does know some things about it.

It takes an average of 6.5 years to get an accurate diagnosis of Sjogren’s Syndrome, according to the Sjogren’s Syndrome Foundation. It took me almost 10 years to be diagnosed. My complaints were of hand pain. There were days my hands hurt so badly that I would just let them lay limp in my lap because doing anything else with them hurt. My internist sent me for a nerve study where the neurologist said I didn’t have carpal tunnel as suspected but that I might consider finding a rheumatologist.

At the first visit with my rheumatologist (if you’re in Chicagoland and would like his name and number, I’ll be happy to provide it!) he spent nearly an hour asking questions. Then there was a blood draw. When I returned I discovered that I had Sjogren’s Syndrome. I am SS-A and SS-B antibody positive. Also, females in my family seem to have autoimmune disease issues.

Honestly, I was only concerned about the joint pain. My hands were the worst and what I complained about most, but most of my other joints hurt too. I wanted that pain gone. I never considered my dry eyes or mouth an issue. I thought I was “normal.”

Why am I sharing this with you? Because I know someone is experiencing the same thing and I want to encourage you to get answers. Research your symptoms. Talk to your primary physician. Talk to people you know.

How am I living with Sjogren’s? Better than some, worse than some. My dry eyes and mouth are manageable. I make sure I have plenty to drink when I eat and talk. I take a lot of medications to help improve quality of life. Some people think meds are evil; I think they let me be mobile. A few years ago I had to make a choice if I wanted to continue with constant pain. I made the choice for medication. Someone else might make a different choice.

I encourage you to be vocal and proactive in taking care of your health. Ask questions. Become informed. Do your research. Share your findings with your physician and dentist.

This is the only life you get, so you want to live it in the best way possible!

I’ve been thinking that thought a lot lately. Lots of things in my life have made it a multi-times a day appearance. That’s not the way it’s supposed to be…

Today I had breakfast with my friend Sue and we were talking about our arthritis pains. When I got in the turbo minivan to leave, I thought, “I’m too young to have this much arthritis. That’s not the way it’s supposed to be.”

It hit me–literally an eye-popping moment–that maybe this is exactly as it’s supposed to be. One of the things I really liked about Buddhism when I looked into it a few years ago was the idea that things just are. Identifying them as “good” or “bad” comes from our egos and are meaningless in the grand scheme of the Universe*.

A small piece of me is a control freak. I want to be able to guide things along the way I want them to go. Buying a house was one of the most stressful things for me because I controlled none of it. I was at the mercy of the realtor, mortgage broker, insurance agents, attorneys, etc. As much as I tried to keep everyone on the path I needed them to be on, it never worked as smoothly as I thought it should. In the end, everything turned out as I wanted, but at what cost? Lots of lost energy trying to control the uncontrollable.

I actually thought I had truly gotten past that phase of my life. My mantra is “it is what it is.” Doesn’t that sound so advanced? So zen? But while I was thinking it repeatedly, there were still areas of my life I was trying to control.

I think the last six months have been the Universe’s way of teaching me a valuable lesson. The only thing I can control is my reaction to things.

Every one of my children has made poor life choices recently. I don’t love them any less. I adore them completely. I don’t hold the poor choices against them. What I do feel is a deep, overwhelming sadness that they have let Opportunities out of their grasps. They had things that would have made their lives easier–in my thoughts any way. (As I typed that last sentence, it occurs to me that there was no guarantee that their lives would have been easier. Another wrong thought on my end!)

Yes, their choices are not ones I would have chosen for them. But they are what they are. The wise thing to do is accept that and move on.

However, as a parent, I will continue to wish for the smooth path for my children. I want them to lead blessed, charmed lives free of angst and regret. I wish they could learn from my mistakes (some that are similar to choices they have made). Unfortunately, as the parent, I am not really a valued resource for my children. Just as my parents weren’t for me–because I didn’t let them.

I’ll accept this message from the Universe. I will try my best to accept that it is what it is. As is my nature, I will forget that simple message over and over again, having to relearn it each time.

As for my arthritis? It still pisses me off.

*To me, the “Universe” is like a giant corporation with God as the CEO. I don’t think he has time to worry about me and my petty problems on a day-to-day basis. Instead, he has assigned me an agent–like my State Farm guy.

I’ve written before about having Sjogren’s Syndrome. It’s your typical autoimmune disease where you don’t always look sick, but you often feel like crap. What makes an invisible illness hard to deal with is the incongruity between how you look and feel. Aches and pains don’t always show themselves physically. That’s why I jumped at the chance to participate in Wego’s Invisible Illness Meme! This is also an event being run through Bloggers Unite.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Sjogren’s Syndrome

2. I was diagnosed with it in the year: 2007

3. But I had symptoms since: The early 90s; I was constantly complaining to my doctor about my sore and aching hands.

4. The biggest adjustment I’ve had to make is: Realizing I can’t do everything I want.

5. Most people assume: Most people assume that Sjogren’s is all about dry eye, but it’s so much more than that. Autoimmune diseases tend to overlap, so I have symptoms of several: lupus and rheumatoid arthritis.

6. The hardest part about mornings are: Getting my body to move. Luckily I am now taking methotrexate so it’s not as bad as before. At one point I had to keep all bottles in the shower open at all times because I couldn’t get them open with my sore/stiff hands and fingers.

7. My favorite medical TV show is: House. Hugh Laurie is dreamy!

8. A gadget I couldn’t live without is: Well, I am a techno whore, so I am particularly fond of all my gadgets. I like to think my keyboard keeps my fingers nimble!

9. The hardest part about nights are: Getting comfortable enough to fall asleep.

10. Each day I take __ pills & vitamins. (No comments, please): 11, except on Fridays when I take 17

11. Regarding alternative treatments I: I take a lot of supplements to help increase the moisture in my body: fish oil, flax seed oil, etc. I take probiotics to help with digestion because you need moisture to keep your digestive tract working.

12. If I had to choose between an invisible illness or visible I would choose: I would pick neither!

13. Regarding working and career: I’m lucky I don’t have to work right now.

14. People would be surprised to know: How tired I get from the smallest things.

15. The hardest thing to accept about my new reality has been: Trying to explain things to acquaintances. I always think they don’t believe me when I tell them I can’t go in the sun or walk long distances. Plus, I imagine that they are always thinking, “well, if you lost some weight…”

16. Something I never thought I could do with my illness that I did was:  Ride a horse. I ride one at my brother Kurt’s farm last year. It wasn’t easy (or pretty!) getting up there, but it was worth it!

17. The commercials about my illness: There are no commercials. Hardly anyone has heard about it.

18. Something I really miss doing since I was diagnosed is: Being in the sun. I like swimming and gardening. Now I garden early in the morning or in the evening.

19. It was really hard to have to give up: Substitute teaching. It’s really stressful and really hard. Stressful: dealing with the sub caller, because I felt completely and utterly guilty when I had to say no. Hard: being “on” with the kids the entire day. I would do so well if I got called the night before and worked half days!

20. A new hobby I have taken up since my diagnosis is: blogging

21. If I could have one day of feeling normal again I would: Do a fun family activity with my family outside.

22. My illness has taught me: Not to take anything for granted, not to be too judgmental, and be grateful for what I have!

23. Want to know a secret? One thing people say that gets under my skin is: When I say something about being tired and the other person says, “I’m tired too!” I wish they knew the level of tired that I feel. It’s not the kind of tired you get from actually doing something physical. Where you know climbing into bed that you accomplished something worthwhile. It’s the kind of tired that is there when you wake up and gets worse through the day. It permeates your entire body and mind.

24. But I love it when people: When someone told me I looked healthier than I had in awhile. I’m not sure how bad I was looking, but it’s good knowing I’m looking better!

25. My favorite motto, scripture, quote that gets me through tough times is: Will this really matter in five minutes, five hours, five days, etc.?

26. When someone is diagnosed I’d like to tell them: Find a good doctor and listen to him or her. Try supplements. Try meds, even if you are afraid of them. I know some people think taking methotraxate is crazy, but it has improved the quality of my life so much!

27. Something that has surprised me about living with an illness is: That it hasn’t beaten me. I deal with it, try to explain it, and take care of myself.

28. The nicest thing someone did for me when I wasn’t feeling well was: When I visited my Aunt Darlene, she didn’t even question my need to nap. Afternoon came, and off we went to nap. That was the nicest thing: not having to explain to someone…just being able to do it.

29. I’m involved with Invisible Illness Week because: I want other people to know that not everyone is as healthy as they appear. And there is nothing wrong with taking care of yourself.

30. The fact that you read this list makes me feel: Validated and happy!

Tomorrow, July 23rd, is World Sjogren’s Day 2010. Here are some things about Sjogren’s Syndrome.

• It is an autoimmune disease: your body’s immune system malfunctions for some reason and begins attacking your own body instead of the foreign bodies it should be attacking. In the case of Sjogren’s, your white cells attack your moisture-producing glands.

• It affects an estimated 4 million people, making it one of the most prevalent autoimmune diseases.

• It’s not just dry eyes and dry mouth. Dryness can affect all body systems, including digestive tract, joints, organs–pretty much everything! Personally, I have mildly dry eyes and mouth, but have joint pain mimicking rheumatoid arthritis, sun sensitivity, fatigue, and digestive problems.

• It is a progressive disease, meaning there is no cure and oftentimes continues to worsen.

• Because the symptoms of Sjogren’s are vague and widespread, it often takes years to diagnose it. It took me over 10 years to get a diagnosis! No one could figure out why my hands hurt constantly. Finally, I saw a neurologist who performed a carpal tunnel nerve test and said I needed to visit a rheumatologist.

• The majority of Sjogren’s sufferers are women, and a majority of them were diagnosed in their late 40s. I was officially diagnosed when I was 41, but had had symptoms since my early 30s.

• There is no medication available that primarily treats Sjogren’s. Most patients live with a cocktail of prescription drugs, over the counter drugs, and supplements to treat their symptoms.

For more information, please visit the Sjogren’s Syndrome Foundation. And pass this along so that others will become familiar with Sjogren’s!