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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.

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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!

Recent Comments:

• enaxor commented on Celebrate! So glad you had good news and what sounds like a wonderful day for your birthday.
• Kim Alcala commented on Celebrate! It sounds like you had a great day!
• labfly commented on Celebrate! Yay Belle! Happy happy Birthday!
• Katgirl commented on Celebrate! Fantastic News! Happy, Happy Birthday!
• Marti commented on Celebrate! Yay!

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© Novel Patient for Novel Patient, 2009. | Permalink | One comment | Add to del.icio.us
Post tags: anxiety, arthritis, blogging, Chronic, Chronic Illness, concentration, concentration problems, emotional toll, experiences, faith, fever, first impression, illness, illnesses, impression, invisible chronic illness, invisible illness week, invisible illnesses, involuntary muscle, joint pain, life, mind, moment, muscle weakness, Numb, numbness, obsessive compulsive disorder, pain, patient, patient community, rib pain, seizures, sleep apnea, stomach pain, tremor, tremors, virtual conference, virtual world, wheelchair

It’s hard to stave off the boredom that sets in when you are sick all the time with multiple chronic illnesses.  I have hard time focusing for long on things like TV and movies.  I can’t read for hours and hours like I used to.  The brain fog gets in the way.  And as big of a computer nerd as I am, I can only spend so much time on it.  So I have to find other ways to fill my time, and I mostly fill it with arts and crafts.

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.

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.

Recent Comments:

• Lu commented on Dreaming Big You are so inspiring to us all! We are all rooting for your novel!
• Shannon commented on Taking a Stand Yo sissa I am so proud of you and how you always reach that next level of courage and persistence. O
• Katgirl commented on Taking a Stand Congratulations on standing! That is a huge obstacle to overcome. Hopefully it will become easier wi
• Denise commented on Taking a Stand God Bless You! Stay strong and fight!!
• Pixie commented on Taking a Stand Proud of you. Always.

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© Novel Patient for Novel Patient, 2009. | Permalink | 2 comments | Add to del.icio.us
Post tags: art therapy, arthritis, arts and crafts, boredom, brain, brain fog, caregiver, Chronic, Chronic Illness, colored pencils, computer nerd, creativity, hard time, health, hospital, hospitalization, illness, illnesses, lapdesk, life, movie, pain, painting, picture, scrapbooking, surrealistic art, tremor

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.comRecent Comments:

• Donna E commented on Pain Scale I, too, live with several chronic pain conditions: rheumatoid arthritis, fibromyalgia, raynaud’s, ch
• blog about health and medical devices commented on Pain Scale health care is much better before the disease, whatever its scale
• alan m rogers commented on Dreaming Big It’s awesome to see people with chronic illness taking up NaNo – and other challenges. I had to leav
• Steve commented on Dreaming Big Go for it! I’m rootin for you… keep your dreams alive… always! Here’s some food for thought to h
• Grandma commented on 10 Ways To Stay Organized With A Chronic Illness I appreciate you doing this blog…you have put alot of work into it and it shows. As I am reading t

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© Novel Patient for Novel Patient, 2009. | Permalink | 3 comments | Add to del.icio.us
Post tags: alternative reality, arthritis, autoimmune, autoimmune hepatitis, autoimmune pancreatitis, diagnosis, Disability, exhaustion, fibromyalgia, hard time, health, health problems, hospital, illness, illnesses, Medication, pain, scrapbooking, sjogren's syndrome, symptom, treatment, wheelchair

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.Recent Comments:

• Katgirl commented on End of the Road? It is a horrible feeling to have a doctor give up on you. I am with Shannon in that it is OK to stop
• Annette commented on End of the Road? And maybe even the new rheumy can recommend another whose opinion he respects. i see one of those to
• shannon commented on End of the Road? Oh man Belle I am so sorry to hear that your doctor told you that. Do not give up hope. They told my
• Jessie commented on End of the Road? I met you in Chat today and my heart goes out to you. I have grands just couple yrs younger. Remembe
• Jeannette commented on End of the Road? Oh you poor soul-I feel for you sweetie as I am and have been there many times. Most importantly-you

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© Novel Patient for Novel Patient, 2009. | Permalink | 8 comments | Add to del.icio.us
Post tags: arthritis, bad situation, brain, brain inflammation, caregiver, complication, health, hepatitis, hospital, kidney infection, pancreatitis, sjogren, Venting, wheelchair