Today is the first day of National Invisible Chronic Illness Awareness Week, and it has me thinking about thinking about both the visible and invisible aspects of my illnesses.   Nearly a year ago now my invisible illnesses became a lot more visible.  The pain from my arthritis became so severe I could no longer walk or even stand.  I was forced to use a wheelchair for my mobility.

Before the wheelchair (and the walker that came before it), my illness was completely invisible.  At the time I found it completely frustrating that no one could see that I was sick.  People assumed that what they couldn’t see couldn’t possibly be serious.  Sometimes people assumed that what they couldn’t see wasn’t even real.  Now I wish I could ditch the wheelchair and still pass myself off as “normal” when I wanted to.  I feel like now my first impression always inevitably includes my wheelchair.

But despite this very visible symbol of my illnesses, I feel more invisible than ever.  It is very hard to go out in a wheelchair, and I am usually too tired and in too much pain to do so.  As a result, I am mostly home-bound.  I am literally invisible to the people in my life I used to see in person.  Out of sight.  Out of mind.

But though I am invisible to most people in the physical world, I am very visible in the virtual world.  Through this blog my illness is not invisible at all.  It is there for people to see plain as day.  Through this blog the invisible becomes visible.  Here I can let you see the things that most people can’t.

Here the joint pain, the numbness in my left side of my body, the severe dryness, the low grade fevers, the debilitating fatigue, the pain when I swallow, the nausea, the stomach pain, the rib pain, the muscle weakness, the tremors, the migraines, the involuntary muscle moments, the memory and concentration problems, the seizures, the sleep apnea, and the obsessive compulsive disorder all become visible.

Here too, the emotional toll is no longer invisible.  The worry, the loneliness, the anxiety for my future, the grief for how things once were, and the sadness for the friends I’ve lost along the way all become visible.

And I especially hope that lessons I’ve learned, the inner strength I’ve found, the faith in myself, and hope for the future are not invisible here either.

National Invisible Chronic Illness Awareness Week is held annually in September and is a worldwide effort to bring together people who live with invisible chronic illness and those who love them.

A virtual conference in held at www.invisibleillnessweek.com and the blog is updated a few times a day during August and September.

Bloggers are welcome to participate anytime, but are encouraged to unite efforts during August and September to increase awareness online and share their experiences as well as encouragement. A badge is available that says you are blogging during the actual awareness week.

Start a blog on Novel Patient Community today and blog about your chronic illness in support of the awareness week!

I have a huge passion for scrapbooking!  I do it almost everyday.  I even do it from bed to conserve energy which is in short supply lately.  My caregiver Melissa is also obsessed withscrapbooking , so she helps me with the things I have trouble with.  Cutting straight when my tremor is bad or my the arthritis in my hands is acting up.  Not only doesscrapbooking give me something to do, it’s extremely therapeutic to exercise my creativity.  I’m also making something I will treasure forever.  It can be bittersweet looking back on times when I was healthier and just plain sadscrapbooking pictures from long hospitalizations, but its a part of my life and it’s good to remember.  The good and the bad and the in between.

[View with PicLens]

I spend a lot of time in my room being ill, so I also enjoy making items to decorate it with.  Over the last few days Melissa and I decoupaged my lapdesk I use to put my keyboard and mouse on while I work at my computer from bed.

Finally I enjoy painting.  I usually use watercolor-colored pencils because they are neat enough to do even from bed.  I like to paint things that symbolize my internal process.  It helps me process the experience of living with a chronic illness.  My often abstract and surrealistic art makes it more tangible.  I think this one I did earlier this week speaks for itself.

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

I just need to vent.  Feeling a bit sorry for myself.  I’m just so frustrated and tired of how things are going!  I’ve been in the hospital a total of 2 weeks with this kidney infection now.  I’m only 25 years old but my health is just completely in the toilet.  I’m so ill I need a full time caregiver and am in a wheelchair.  I can hardly get out of bed most days.  I feel like the example for every possible complication of Sjogren’s!  Between the AI pancreatitis and the AI hepatitis and the brain inflammation wreaking all sorts of havoc.  Then there’s the arthritis which has me in a wheelchair that I wonder if I’ll ever get out of.

I’d say I’m too young for this, but obviously I’m not.

I’ve lost most all my friends to being sick.  None of them wanted to deal with it.  They are busy leading their lives and don’t have time or the desire to see or talk to me.

I’m tired of being such a financial and time burden on my mom.  I feel so physically helpless and I miss my independence terribly.

Most of the time I put on a cheerful face and make the best and even find the positives of this bad situation, but right now I just am feeling really angry and frustrated and needed to let it out.  So thanks for listening.

It’s easy to believe that it is who you are inside that matters when you like the person you are on the outside.  I spent most of my life as a thin and able bodied person.  I was often told I was beautiful or that I looked like a model.  And though I enjoyed those compliments (what girl wouldn’t?), I never placed that much importance on my appearance.  But over the last year or so I’ve gone through major changes that have affected the way I perceive my body and myself, and the way I looked on the outside started to take on an increasing significance and meaning.

About a year ago I was put on Prednisone, a steroid my doctors hoped would get my autoimmune pancreatitis and other autoimmune diseases under control.  One of its many side effects was rapid weight gain that caused me to put on over 100 pounds during the last year.  In addition, my arthritis got so severe I was no longer able to put any weight on my joints which has left me to get around in a wheelchair.

In less than a year, I was dealing with two major body and life adjustments at once.  I no longer looked like myself when I looked in the mirror.  None of my clothes fit.  I went from a size 2 to a size 24.  In addition, I could no longer walk.  I greeted the world from belly button level, constantly looking up to make eye contact with everyone.

I no longer felt likable on the outside.  I felt unattractive and therefore unable to make a good first impression.  I expected people to treat me differently and unsurprisingly they did.  They seemed uncomfortable and unsure of how to deal with me.  And I felt ashamed of myself.  I dreaded running into anyone who knew me as I was before.  The only thing that seemed worse than being thought of as “the fat girl in the wheelchair” was to be thought of as “the fat girl in the wheelchair who used to be thin and able to walk”.

But as the months went by like this, I started to change how I saw myself.  Truthfully, it really started with buying myself new clothes that I liked despite the size on the tag and some new makeup to cover up the horrible acne I also developed from the Prednisone.  I decided it was worth trying to look the best I could despite the fact that I wouldn’t ever look the way I felt I should at the weight I was at.

And I started to adjust to life in a wheelchair as well.  I got used to looking up at people and needing help with difficult doors.  I found that a confident smile put people more quickly at ease with me than awkward averted glances.

One day I realized people were treating me normally again.  And then I realized that it wasn’t they who had changed at all.  I started seeing myself normally again.  I was being my normal funny, fun, intelligent, friendly self and people were just mirroring that right back.  I realized that the whole time people were treating me differently was because I was expecting them to.  Once I went back to expecting them to treat me like they always had, they did!

And now I realize just how important appearances are.  But it isn’t the way I used to think.  It isn’t what you physically look like at all.  It’s how you carry yourself and that image of yourself that you put out there for people to pick up on.  As long as I display to the world the confident, approachable person I am, I will be treated accordingly.  And that is something that no amount of side effects or wheelchairs or other life changes can take away from me.