Appearances can be deceiving with a chronic illness.  Looking at a person you usually can’t even begin to see what they are going through.  Sometimes even your doctor can’t see what’s right in front of them.  Sometimes you have to spell it out for them.  Especially when you have a lot of symptoms and medical problems, I’ve found it extremely helpful to bring your doctor a printed list summarizing your medical history and list of symptoms broken down by category.

This serves another purpose as well.  When you have an unexpected and most unwelcome flare of autoimmune pancreatitis pain, you can distract yourself by making it into art while you wait for your pain meds to kick in!

Head over to Wordle to try it out for yourself (and feel free to link me in the comments).

1. The illness I live with is:  Sjogren’s Syndrome, but I also have Autoimmune Pancreatitis, Autoimmune Hepatitis, Hashimoto’s Thyroiditis, Fibromyalgia, and Arthritis.
2. I was diagnosed with it in the year: 2007
3. But I had symptoms since: I was a small child.
4. The biggest adjustment I’ve had to make is: to life in a wheelchair.
5. Most people assume: that I’m too young to have this many health problems.
6. The hardest part about mornings are: waking up way to early in pain and never getting enough sleep.
7. My favorite medical TV show is: House, I suppose, but I don’t really watch it anymore.  I have a hard time concentrating on TV.
8. A gadget I couldn’t live without is: my mac.  It is my connection to the rest of the world.
9. The hardest part about nights are: trying to get sleepy despite the pain.
10. Each day I take 28 different medications. (No comments, please)
11. Regarding alternative treatments I: am only open to trying ones that have been shown to work in some sort of clinical trial.
12. If I had to choose between an invisible illness or visible I would choose:  an invisible one.  Since I’ve recently started using a wheelchair, my illness has become move visible and I long to look “normal” again.
13. Regarding working and career: I am currently on disability.
14. People would be surprised to know: that I don’t remember what “no pain” feels like.
15. The hardest thing to accept about my new reality has been: that I can’t just push through the pain and exhaustion without making myself sicker.
16. Something I never thought I could do with my illness that I did was:  travel for pleasure, but I recently went to an alternative reality gaming conference in Portland.
17. The commercials about my illness: don’t exist (which could be why no one seems to have heard of it).
18. Something I really miss doing since I was diagnosed is: hiking and other physical outdoor activities.
19. It was really hard to have to give up: my independence, but I’ve had to learn to accept a lot of help from others.
20. A new hobby I have taken up since my diagnosis is: scrapbooking.  I’m completely obsessed and even do it from bed when I can’t sit up at the table.
21. If I could have one day of feeling normal again I would: backpacking through Australia.
22. My illness has taught me: that happiness is where you make it for yourself.
23. Want to know a secret? One thing people say that gets under my skin is: “You just need to exercise more.”
24. But I love it when people: Call or email me out of the blue to let me know they are thinking of me even if I haven’t been up to hanging out lately.
25. My favorite motto, scripture, quote that gets me through tough times is:  Everything might not happen for a reason, but you can make a reason out of everything that happens.
26. When someone is diagnosed I’d like to tell them: that life isn’t over and that they will find ways to cope and adjust.
27. Something that has surprised me about living with an illness is: how much opening up and sharing about my illness has given me the opportunity to meet new people who in turn share about themselves.
28. The nicest thing someone did for me when I wasn’t feeling well was: lug all my scrapbooking supplies to me in the hospital, so I could take my mind off being there with my favorite activity.
29. I’m involved with Invisible Illness Week because: I hope by raising awareness people will have more sensitivity and empathy for the people in their lives with invisible illnesses.
30. The fact that you read this list makes me feel: hopeful that my sharing about my experiences will make positive difference.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

April is Sjogren’s Syndrome Awareness Month, and since it is currently my main diagnosis I thought this would be a good opportunity to explain more about what it is and what living with it is like.

Most people I encounter have never heard of Sjogren’s (pronounced “show-grins“).  It’s hallmark symptom is extreme dryness – mainly of the eyes and mouth.  I’ve had severely dry mouth my whole life.  As a child, before I was diagnosed, I would constantly complain that food was too dry.  I would try to swallow it and it would stick to my mouth and I’d feel like I was going to choke on it.  At the time, it got me pegged as a picky eater.  I wasn’t diagnosed until I was 23.

My Autoimmune Pancreatitis, Autoimmune Hepatitis, and neurological problems are also complications that can come with Sjogren’s.  Combined they’ve caused me the most problems ranging from not being able to eat for months at a time to temporarily losing the ability to move my legs.  I’ve spent months in the hospital from these complications of Sjogren’s.

Below is an excerpt from the Sjogren’s Foundation website.  Please visit them for more information.

From the Sjogren.org website:

Sjögren’s syndrome is a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands. Today, as many as four million Americans are living with this disease.

Although the hallmark symptoms are dry eyes and dry mouth, Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma.

With upwards of 4,000,000 Americans suffering from Sjögren’s syndrome, it is one of the most prevalent autoimmune disorders. Nine out of 10 patients are women.

About half of the time Sjögren’s syndrome occurs alone, and the other half it occurs in the presence of another autoimmune connective tissue disease such as rheumatoid arthritis, lupus, or scleroderma. When Sjögren’s occurs alone, it is referred to as “Primary Sjögren’s.” When it occurs with another connective tissue disease, it is referred to as “Secondary Sjögren’s.”

All instances of Sjögren’s syndrome are systemic, affecting the entire body. Symptoms may remain steady, worsen, or, uncommonly, go into remission. While some people experience mild discomfort, others suffer debilitating symptoms that greatly impair their functioning. Early diagnosis and proper treatment are important — they may prevent serious complications and greatly improve a patient’s quality of life.

Since symptoms of Sjögren’s syndrome mimic other conditions and diseases, Sjögren’s can often be overlooked or misdiagnosed. On average, it takes nearly seven years to receive a diagnosis of Sjögren’s syndrome. Patients need to remember to be pro-active in talking with their physicians and dentists about their symptoms and potential treatment options.

Since the disease was first identified in 1933 by Dr. Henrik Sjögren, it has been proven to affect virtually every racial and ethnic group. General awareness about Sjögren’s syndrome is still lacking and increased professional awareness is needed to help expedite new diagnoses and treatment options.

Please take a moment to share this with a friend, twitter about it, and etc. to help raise awareness about what Sjogren’s syndrome is (the buttons at the bottom of this post make sharing with different sites like twitter easy).

So I got a call from my doctor on Monday.  Apparently some lab tests had come back and my liver enzymes are elevated.  It could be from being on Prednisone for so long and the over 100 pounds of weight it’s made me gain in the last year.  It could be from the new medication that I’m on that supposed to be helping slow down my autoimmune diseases but isn’t helping (another story).  Or it could be my autoimmune hepatitis flaring up.

All of the possibilities are not very good.  So I have an appointment with my gastrointestinal doctor on Tuesday to do some more tests and decide what to do.

In the meantime, I’m unsuccessfully trying not to worry and wondering if this is why I’ve been feeling so lousy the last few weeks…

My name is Lauren, and I’m a 25 year old with an unusual collection of autoimmune diseases that includes Polyarthritis, Autoimmune Pancreatitis, Autoimmune Hepatitis, Fibromyalgia, Hashimoto’s Thyroiditis, and IgA Deficiency, and Sjogren’s Syndrome with neurological involvement. I write about my struggles dealing with sometimes dangerous new treatments, balancing relationships with family and friends, my difficulty adapting to life in a wheelchair due to debilitating arthritis, and most importantly my quest to maintain hope and faith in myself through it all. I am also an avid scrapbooker, alternate reality gamer, and an aspiring novelist writing my first book – a coming of age story set in a dystopian future.