Today I walked ten whole feet!!!  It was only my second time walking in over a year!

It is something that for a long time I was afraid to even pray for.  But with a lot of prayer recently, I’ve come to realize that with a lot of faith in both myself and in God, anything is possible.

It’s also taken willingness to put up with significant pain.  But reflecting back on how much pain I was in while attempting to even stand a year ago (which is why I was in the wheelchair to begin with – very severe joint pain), the joint pain is significantly less than it once was.  I’m not sure what the final factor in the lessening of my joint pain is.  Maybe the Rituxan finally kicked in after all these months.  I just don’t know.  But I am so thankful that I have the opportunity to try to get up and out of my wheelchair again!  I decided to think that it wouldn’t hurt as badly as it once did, and so far it hasn’t!

My goal is to walk three days a week – Monday, Wednesday, Friday – leaving at least a day inbetween to rest, so I don’t completely over do it.

In the meantime, I’m trying to taper my Prednisone dose very very gradually.  In the recent past, every time I would try to taper the dose my neurological symptoms would flare – face drooping, increased tremors, numbness, and so on.  And I’ve been afraid that this would happen this time.  But so far it hasn’t.  And there are only three differences this time to which I can attribute my success so far.  Tapering insanely slowly, prayer, and the decision to think positivity.  Some combination of the three would be my best guess at the reason.

Though for years now I’ve considered myself a very positive person, it never ceases to amaze me what the power of positive thinking can do.  And now I’ve added prayer and a faith in God into the mix.  I feel a sense of inner peace I have never known.  And perhaps that is the most healing thing of all.

I have a long road ahead of me.  But I plan to take it one step at a time, one day at a time.  That is how I take all of life.  One step at a time.  One day at at time.  With a positive thought in my head and a prayer in my heart.

I try to look on the bright side of things.  But when I was evaluated last week for my new permanent wheelchair last week, it brought up some unexpected feelings.

I’ve been feeling this odd sort of guilt.  Part of me feels like a failure and a quitter for finally working on getting a permanent and actually comfortable wheelchair.  I feel like it is symbolic of giving up on getting better even though I know that is not the case.  Rationally I know that my current wheelchair which was never meant to be a permanent solution is keeping me from getting the highest quality of life under the circumstances.  Right now I can’t be comfortable and in my wheelchair at the same time.  It doesn’t fit me well and causes me additional pain.  When I consider going to a movie on a rare occasion, I usually decline because I just can’t sit in my chair that long.

The new chair is going to be custom built to fit me.  It will allow me to be up and out of bed more of the day.  The whole chair tilts back to take the weight off my butt when I need it to and the feet also elevate which will help keep my ankles from throbbing.  It will have a custom pressure relieving cushion to sit on and the back rest will actually be tall enough to be useful.

All of this will help me become no longer bed-bound most of the time.  Which will be great. Yet some part of me still feels guilty.

The good news is that it comes in purple!  So that is what I am trying to focus on.  Not that I need a permanent chair, but the color.  It may sound silly, but it really does help.

The other issue is that I do not have wheelchair accessible transportation.  I won’t be able to take my new chair anywhere without it.  My current wheelchair is meant to travel — it comes apart into 3 lighter pieces that we can put in the car.  If I can’t take my new wheelchair out of the apartment, I’ll be just as stuck as I am now — in too much pain to get out and do anything.  And with SSI my only source of income, I cannot afford to even buy a used one.  So I am on a mission to find someone who will donate a wheelchair accessible vehicle using the power of social networking tools like Twitter, Facebook, and even this blog.

In case you are wondering, if money were no object, I would get a wheelchair accessible Honda Element.  But it would be a holiday season miracle if I could get any vehicle that can safely transport me to and from my doctors appointments that are about an hour away and anywhere else I needed to go more locally.  I will not be driving it, so I need the conversion to be for the passenger side.

I have approximately  3 months before I will be getting my new chair.  So consider this a call to action!  Please help me spread the word!  Please take a minute to post this to your Twitter or MySpace or Facebook or anything else you can think of!  The more people who see this the greater the chance one of them will have a vehicle for me.  Words simply cannot express how grateful I am for your help.

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).

“How would you rate your pain on a scale of 1-10?”

I detest this question.  But I get asked it all the time from my doctors.  How can you apply a pain scale to chronic pain?  I don’t even remember what no pain feels like.  So the whole scale seems to shift.  Pain is so relative.  I have gotten used to being in pain all the time.  I’ve gotten used to the constant stomach pain from the Autoimmune Pancreatitis and the debilitating joint pain that keeps in the wheelchair.  Not something you want to get used to.  But it’s amazing how much I can even take my normal level of pain for granted.

The last 3 days I was without my pain medication due to a major pharmacy mess up coupled with a significant insurance snag.  My stomach hurt and my joints seemed to be screaming with pain.  In more pain, I was more drained, more cranky, more emotional.  I couldn’t sleep well.  I’m yawning even now from the last few nights of poor sleep.  But strange thing was, I didn’t let myself realize how much pain I was really in until it was over… after I finally got my pain meds today again.

The sudden relief from pain was dramatic.  It’s amazing what you can live with when you have no choice, but I won’t be taking my “normal” level of pain for granted so quickly again.

Part of dealing being chronically ill is learning to smile through the hard times.  But right now though I’m having a hard time doing even that.

On Monday night, when I went to take my DailyMugShot, I wasn’t satisfied with my first, second, or even third attempts at my picture.  My smile was crooked in all of them.  Finally I realized that no amount of retakes would correct the problem.  I couldn’t make my face smile evenly on the left side.  In fact, the whole left side of my face was drooping slightly and my pupils were unevenly dilated.

I tried not to panic.  I looked back at my older daily pictures and noticed that this had been going on all week and getting worse with each picture.

A visit to my neurologist confirmed my suspicions that as I’d been trying to taper my dose of Prednisone my brain inflammation was returning.  So now I’m back up on an even higher dose of Prednisone to try and get it back under control.

In the meantime, I’m trying to continue to smile through the hard times.  Even if my smile is a crooked one.