Image by Stewf via Flickr

17

The number of diagnoses I’ve accumulated so far… Sjogren’s Syndrome, Autoimmune Pancreatitis, Autoimmune Hepatitis, Hashimoto’s Thyroiditis, Cerebritis, Neuropathy, Autonomic Dysfunction, Fibromyalgia, Raynaud’s, Erythromelagia, IgA Deficiency, Asthma, Sleep Apnea, OCD, Depression, Anxiety, and ADD.

7

The number of years it took to be diagnosed with Sjogren’s Syndrome.

26

The number of years I’ve been living on this earth.

28

The number of medications I take

150

The number of pounds I’ve gained from Prednisone.

30

The number of pounds I’ve lost recently.

3

The number of pants sizes I’ve dropped recently.

8

My pain level right now.

17

How old I was when I when I last felt at all healthy.

3

The number of surgeries I’ve had… appendix removed, gallbladder removed, bladder stimulator implanted.

2

The number of doctors appointments I have next week.

13

The number of doctors I see on a regular basis.

0

The number of days I’m without pain.

Recent Comments:

• Shalunya commented on Patience in the Hospital I am blessed that recently I have found myself on the light side of the hospital bed. So I will send
• Ariana commented on Patience in the Hospital Hoping my visit will help with the monotony tonight!!!
• Jeanne commented on Sjogren’s Syndrome Awareness Month Lauren, Thank you for this informative post about Sjogren’s Syndrome. I am so sorry you are still in
• Rachel commented on Ladylike: Feeling Feminine in the Hospital Loved the shampoo caps for my first hospital stay. Helped me feel fresher and cleaner than the brief
• maureen commented on Ladylike: Feeling Feminine in the Hospital Love your blog….so pretty! First time I’m here, but I will be back. Love those hospital gowns you

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Post tags: ADD, anxiety, appendix, Appointment, appointments, asthma, autoimmune, autoimmune hepatitis, autoimmune pancreatitis, Autonomic, autonomic dysfunction, blog, Cerebritis, Conditions and Diseases, depression, depression anxiety, doctor, Doctors, Dysfunction, erythromelagia, fibromyalgia, flickr, gallbladder, Hashimoto, Hashimoto's thyroiditis, health, iga deficiency, illness, Medication, medications, Numb, number, OCD, pain, Prednisone, raynaud, sjogren, sjogren's syndrome, sleep, sleep apnea, stimulator, surgeries, Syndrome, thyroiditis, week

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).

Recent Comments:

• alan m rogers commented on Walk By Faith Fantastic and amazing. I was baptized (in a hot tub, no less!) just over two years ago. I have fibro
• Jen Fryer commented on Walk By Faith What wonderful news. I cannot tell you how happy I am for you.
• Alison commented on Walk By Faith I know it can be hard to talk about your faith in this kind of forum, but I’m glad you did! The best
• Annette commented on Walking: The Power of Positivity and Prayer I heard about the insanely slow taper from someone else, and she had the most success of anyone in a
• stephanie commented on Walking: The Power of Positivity and Prayer That is wonderful! Keep up the great work. Stephanie

© Novel Patient for Novel Patient, 2009. | Permalink | One comment | Add to del.icio.us
Post tags: Allergies, anxiety, Appendectomy, art, autoimmmune, autoimmune, autoimmune hepatitis, autoimmune pancreatitis, Cholecystectomy, Chronic, Chronic Illness, concentration, Costochondritis, depression, distraction, Erythomyalgia, Fatigue, fever, fibromyalgia, flare, Hashimoto, hospitalization, Hospitalizations, Hospitalized, iga deficiency, illness, intolerance, involuntary muscle, kidney infection, medical history, medical problems, meds, memory problems, muscle weakness, numbness, obsessive compulsive disorder, Osteopenia, pain, pancreatitis, pupils, seizures, severe pain, sjogren, sleep, sleep apnea, stomach pain, symptom, symptom list, tag cloud, tremor, wheelchair, word cloud

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

© 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