As the month draws to a close, I am reminded that April is Sjogren's Syndrome Awareness Month.  Sjogren's is my primary diagnosis, the overarching disease process that ties all (or most) or my symptoms together. But what is Sjogren's Syndrome?  Share

Related posts:

1. Sjogren’s Syndrome Awareness Month April is Sjogren's Syndrome Awareness Month, and since it is currently my main diagnosis I...
2. My Illness By The Numbers 17 The number of diagnoses I've accumulated so far... Sjogren's Syndrome, Autoimmune Pancreatitis, Autoimmune Hepatitis,...
3. Love Bug Relationships are complicated enough, but adding chronic illnesses into the mix increases complications exponentially. In...

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

When you are faced everyday with a chronic illness, it is easy to find your life suddenly defined by the things you can’t do which is why its why its all the more important to remember to find things you can do.

It can be little things you still can take pleasure in.  For me it is things scrapbooking, writing this blog, reading a good book.  But sometimes you have to dream big and push yourself.  Sometimes you have to WRITE a good book.

There are a lot of things I really can’t do.  So many things I gave up due to my illnesses.  I no longer can go hiking or play tennis.  I can’t even go out in the sun much due to sun sensitivity.  Before I got sick I dreamed of being a filmmaker and was attending University of Southern California’s film school in pursuit of that dream.  Sadly illness and the financial hardship that often comes with made me a college drop out.  I used to love acting and community theater… another passion I’ve had to let fall by the wayside.

But it hasn’t been all giving things up.  My illness has made me push myself to find new ways to stimulate, entertain, and express myself.  I discovered my passion for scrapbooking and other crafts.  With nothing to do but sit at my computer all day long, I learned I had a knack for the technical .  Now I can build websites and social networks from bed.  I got involved in alternate reality games as a player and later as a game designer.  Through these games I found an online community of the most supportive, caring, and talented people I know who I feel fortunate to call my friends.  Friends that have accepted me illness and all.  I started writing this blog and rediscovered my passion for writing.

Which is why next month I am going to push myself once more.  Next month is National Novel Writing Month, and I have signed myself up for the second year in a row.  And along with the other participants, I am going to try and write an entire novel in a month.

It is scary to announce this here on this blog because now I am in a way accountable to someone other than myself.  But I think that will be a good thing as last year I barely managed to write 1000 words.  Last year, I was fresh out of a 6 week hospitalization, but my novel succumbed to the pain and the fatigue and the brain fog.  I am worried that I won’t be able to concentrate this year.  That the pain will be too distracting.  That I’ll be too tired.  But then I remember all the things I have already given up and all the things I have gained since this illness began and decide that if I give up trying and I give up the DREAM then I have already lost.

If I don’t end up writing a novel in a month, so be it.  Frankly I would be happy to make a big dent in a rough draft.  Even that would be a huge accomplishment for anyone.  But I’m dreaming big, so I’m going for the whole thing.

During the month of November, I invite you to track my word count as I write on my NaNoWriMo page.  I invite you to cheer me on, or even join me!  If writing a whole novel in a month isn’t you’re thing, I hope you’ll think about the things you’ve given up along the way due to your own pain (physical or otherwise) and all the things you’ve gained along you’re own journey, and still remember how to dream big.

Recent Comments:

• Kim commented on Wheelchair Dance That was fantastic!!!!!!!!!! First, my fingers were goin’ on the keyboard – I challenge anyone to lo
• Alison commented on Wheelchair Dance What an great blog! I used to dance to that song (turn around) alone in my room in 7th grade. And yo
• WackyLisa commented on Wheelchair Dance You’ve reminded me of how much fun I had at a workshop put on by AXIS Dance during college. I don’t
• Heather commented on Wheelchair Dance That’s SO awesome!! I love it! Have you seen the Glee episodes with the wheelchair dancing? You’d ge
• Kairol Rosenthal commented on Wheelchair Dance I adore these videos. I’m a choreographer, but have not made work in a long while. I’m also a cancer

---

© Novel Patient for Novel Patient, 2009. | Permalink | 3 comments | Add to del.icio.us
Post tags: alternate reality games, blog, brain, brain fog, Chronic, Chronic Illness, crafts, Fatigue, film, film school, financial hardship, game designer, hope, hospital, hospitalization, illness, illnesses, life, nanowrimo, national novel writing month, novel, pain, patient, scrapbooking, social networks, sun sensitivity, university of southern california, Writing

Right now I’m waiting for some extra pain meds to kick in.  I’m trying to tapper my Prednisone dose down from 25mg a day to 20.   It doesn’t seem to be going well.  After dinner that telltale Autoimmune Pancreatitis pain started up for the first time since I was in the hospital last.  Not good.  I’ve also been running low grade fevers in the afternoons.  I suppose I’ll be putting in a call to my Rheumatologist tomorrow.

I also need to call my Internist for an appointment to check out what seems suspiciously like a sinus infection.

And I have a handful of other medical related calls to make (including some especially dreaded ones to my insurance company).  It’s enough to make me want to go hide under the covers and go back to sleep.

I always tell people that you have to be your own advocate, but it can be downright exhausting under the best of circumstances let alone when you are sick.

But I, like so many others, don’t have anyone else to do it for me.  So I have to be my own advocate.  I have to stay on top of these phone calls and appointments and lab results and new symptoms.  But lately it just wears me down and out.  It’s a lot of stress and a lot of effort.  Mentally and emotionally.  It’s all in the details, and so much is at stake.

It shouldn’t be this way though.  When people are sick they should be able to just focus on getting better and not navigating through medical bureaucracy and red tape.  It scares me to wonder what would happen if I became completely to ill to do it for myself.  Who would advocate for me then?  There are so many people already in that very situation.  I shudder to think what kind of care they are getting.

There must be a better way.

In the meantime, I do what I have to do regardless of the brain fog making it hard to think straight and the fatigue making it hard to keep my eyes open.  Because I’ve learned that even though being a professional patient is a full time job, you don’t ever get to call in sick.

Recent Comments:

• Marti commented on Blogiversary: A Belated Thanksgiving And we are grateful for your upbeat willingness to give this battle your all and stay true to your c
• Britta commented on The Unexpected It sounds like you have Chronic Lyme Disease! There is hope…even though it is a big controversary
• Jeanne commented on Visualizing Symptoms Lauren, Thinking of you! Jeanne
• Jeanne commented on The Unexpected Lauren, I am sorry about your frustration and disappointment. These are certainly understandable
• justsaynoemore commented on The Unexpected Lauren, just to say I am thinking of you and hope that this new road leads to answers and good treat

---

© Novel Patient for Novel Patient, 2009. | Permalink | 5 comments | Add to del.icio.us
Post tags: advocate, appointments, autoimmune, autoimmune pancreatitis, brain, brain fog, bureaucracy and red tape, circumstances, Fatigue, fever, hospital, Insurance, insurance company, internist, low grade fevers, meds, pain, patient, phone call, Prednisone, professional patient, Rheumatologist, stress, symptom, waiting