Tomorrow I am heading down out of town on a trip to see a Sjogren’s specialist.  My appointment is on Monday.  Since it is about 3 hours away we — my mom and I — will be spending two nights at my Grandma’s house which is in the area.

I have high hopes that he will be able to provide me with some new treatment options.  At the same time I am nervous about getting my hopes up too high.  I have been disappointed by doctors many times before.

It can be hard to maintain hope when living with a chronic illness especially when you are told by your doctor that you are basically out of treatment options.  But the alternative — falling into despair — is much much worse.  So I choose to maintain my high hopes knowing full well that sometimes I will be disappointed.  That’s okay.  Disappointment is a part of life.  I realized a long time ago that you have to take the good with the bad.

On a different note… Sometimes I surprise even myself with what I can do if I set my mind to do it.  Since the start of the month I have been writing up a storm on novel for National Novel Writing Month or NaNoWriMo.  As of this writing, I am up to 10,701 words which puts me about 700 words ahead of schedule!  You can go to my NaNoWriMo Profile page to continue to follow my progress and to read a synopsis and excerpt from my novel.  Since I started doing creative writing again, I’ve been on sort of a writers high.  I don’t remember the last time I was in such a great mood for days at a time!

I’ve also stood up another time for a another whole minute.  I haven’t been able to do it as often as I would like, but the fact that I’m doing it at all makes me very happy.

I think hope is self-perpetuating.  Hope gives you the strength to reach beyond what you think you can do which in turn gives you more hope.  And all these things give me hope for a good today and a better tomorrow.

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.