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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.

Recent Comments:

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Post tags: accessible transportation, circumstances, failure, guilt, life, News, pain, permanent solution, ssi, wheelchair

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