Sometimes in the face of adversity you just have to stand tall.

My doctor woke me up on Sunday morning to tell me that I may have a blood disorder – Polycythemia. Unless there’s been a mistake either with the lab or the blood draw itself, I am making too many red blood cells and my iron is much too high. He was hesitant to tell me what might be causing it, but if the repeat test I got today still comes back high he wants me to go see a Hematologist. I looked it up myself and the possibilities of the causes are rather frightening… ranging from cancer to a terminal illness to kidney disease.  Needless to say I’ve been feeling rather anxious about it.

In addition, I’ve started tapering my Prednisone dose again post face drooping.  My neurological symptoms of my brain inflammation have been coming right back.  My tremor especially has been so bad I am having trouble doing simple tasks.  It’s so frustrating I just want to cry.

So this evening talking to Melissa, my caregiver, about it I broke down.  I’m so tired of it being one thing after another!  It’s two steps forward one three steps back.  So I decided to take a stand.  Literally.  I wanted to see how long if at all I could bare the joint pain I get while standing.

We turned my wheelchair around so I could use the back of it to hold myself up, and Melissa sat in the chair to help weigh it down so it wouldn’t tip.  Trembling I slowly pulled myself to my feet.  It was agony.  But I shifted my weight until I found a bearable “sweet spot”.  And then I stood there for a over a minute!

It was excruciating and exhausting.  I needed to lay down afterward and take some extra pain medication.  But the victory was well worth it!  I stood for longer than I’ve been able to in over a year! I showed my illness who is boss!

I still have high hopes that the Sjogren’s specialist I’m seeing on November 9th will have some new treatment options for me that will significantly help my joint pain and neurological symptoms.  But in the meantime, I will continue to take a stand against my illness.

“You are basically out of treatment options at this point.”

My rheumatologist’s words were like a slap in the face.  The realization that I may be at the end of the road isn’t easy to accept.  The Rituxan didn’t work.  My rheumy doesn’t want to try anything else at this time.  Should I just accept that this is how my life is for the foreseeable future?

I’ve been in a wheelchair for just about a year now.  Perhaps it is time to stop thinking of it as a temporary thing and accept it as a permanent part of my life.  Doing so seems reasonable enough under the circumstances, so why do I feel like such a failure?  Is it wrong that part of me wants to stop fighting it all the time and just get on with living as things are?  Does that mean I’ve given up?

But there is a glimmer of hope.  My rheumy has referred me to another rheumy who specializes in my main diagnosis, Sjogren’s Syndrome.  I still am hanging on to the hope that he’ll have another idea for treatment for me, and that this time it will work.  But I’m kind of terrified that I’m just setting myself up for more disappointment.

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

My dad and I REALLY don’t see eye to eye when it comes to my choices of treatment.  He has a very hard time accepting that as a 25 year old woman they are in fact my choices and not his.  My dad is a staunch believer in some pretty radical (and some not so radical) alternative medicine treatments.  He believes that all my doctors are wrong because they are from a western medicine perspective.  He doesn’t even believe in my diagnosis.  So he sees my choice to follow conventional treatments in effect killing myself.  His words not mine.

This makes it VERY difficult to have a relationship with him since right now my health is such a big part of my life.  And he won’t agree to disagree.  I feel at such a loss at what to do.  I don’t want to cut him out of my life, but I don’t need his constant negativity about my choices.  I’m the one who is sick.  I shouldn’t have to take care of him and his anxieties as well.  But that’s basically been my role in my family my entire life.

As much as I wish my dad will change, I don’t believe he ever will.  I don’t know what that will mean for our relationship going forward, but it makes me sad that my illness is driving another wedge between a person I love and myself.  It happened with so many friends who just didn’t want to or couldn’t or didn’t know how to deal with someone their age being chronically ill.

People have such strong and personal reactions to someone else’s chronic illness that I think they easily forget what that person is going through.  My dad is afraid of some horrible side effect occurring from a medication I’m on, but he never acknowledges MY fears.  He tells me how he is sooo worried about me every day, but what am I supposed to DO with that?  Does he really expect me to be the one to comfort HIM?!

Just because I put on a brave face and do very best to be optimistic and make a life for myself despite my illness doesn’t mean I don’t have needs too.  It doesn’t make the intense lonliness and isolation or the fears for my future or the daily physical pain of my illness any less.

Buy my dad doesn’t see it this way.  So he continues to drive the wedge in deeper.  And it hurts.

So I’m supposed to be starting a new treatment – Rituxin infusions, and I’ve been waiting for the insurance to approve it.  And waiting.  And waiting.  And waiting.  Waiting for TWO MONTHS now.  Calling every week or so.  Having no one call me back.  Called again today and was told the person I need to speak to will be there tomorrow only, so I have to call back then.

Do you find this shocking?  I don’t.  This is pretty much par for the course.  And as ridiculous as it is, I’m sure I’m hardly the only one going through this kind of thing.

So I wait.  I wait while my joints swell to the point it hurts to type this.  I wait while I become to tired to do even the few things I had been able to do.  I wait while my numbness gets worse.  I wait and wait and wait.

Being chronically ill is in itself a waiting game.  If its not waiting on insurance, it’s waiting on a medication to start working or a side effect to go away or for test results to come in or to get in to see a specialist.  Waiting to get better.  Waiting to start my life again.  Waiting to be productive again.  Waiting to go out again.  Waiting to have a social life again.  Waiting to look like myself again.  Waiting to feel like myself again.  Waiting.  Waiting.  Waiting.

Did I mention that I’m not a patient person?