Monday, June 14, 2010

High Priority

A case worker paid a visit today, a sweet grandmotherly woman that assesed me, my status of health and offering  more assistance with the non-profit program she is affiliated with.  I'm now on high priority for an Occupational Therapist. I'm on high proirity for a hospital program that will take months to get in even still. 

She asked pages of questions, can I cook, can I use the bath, can I use a walker. Everything as we went down the list was another slam. I'm really trying hard to accept that I can't do simple things - at all for myself. I'm trying hard to fuck that pride over and over.

I'm sick. I am so very sick.

We've been over what I've lost, and it seems to be more. I was in the meeting for almost 2 hours today, in the living room, and doing nothing but sit on the couch and answer questions. I wasn't alone, luckily. As the pain continued to increase my thoughts get very cloudy. I feel like I am swinging in a giant ship that is going through mud and being hit. Over and over. I was pulling all my energy to try not to look like I was swinging, but I don't know how successful I am. This happens daily. Being awake is pretty overrated.

In addition to the aids that I spoke about already, she offered and really is pushing that I get a Personal Support Worker. So someone to help me up, bathe, get dressed and put something in the microwave. They are not allowed to prepare meals, or do housework, but laundry twice a week is offered.  She also offered Meals on Wheels, which is a great program but I don't think would work for me for many reasons. The deliveries are at noon everyday, and I have so many allergies to foods that I think it would be too much of a risk. The Physical Therapist can offer "Energy Conservation Techniques."  The Occupational Therapist can offer large rails so I can get out to the living room safely.

She is also pushing that I get a Life Line pendant. Yup, I fall and I can't get up. 

Slam - I'm not a ballerina anymore
Slam - I'm 36 years old.
Slam - I don't go outside. 
Slam - I need another transfusion ASAP. 

My feet go from white to blue to red. My ribs are stabbing, I twisted my knees. My legs jump and spasm. My body is on fire. It never stops. I hear I'm High Priority at every turn. I am trying to be strong, but the fact is,

I'm sick. 
I'm so very sick.


  1. I can't imagine re-filing out my Social Security Disability and Supplemental Security Income application forms. That was over 10 years ago, I was 21 and I kept breaking down in tears at every Activity of Daily Living question. My Mom swore I was exaggerating/flat out lying so I minimized as much as I could on the forms to make her happy but even then... it was a rude awakening as to how sick I was even then.

    I have someone who comes in weekly and does the housekeeping and it has been invaluable. It was hard to admit that I had to get the help and even harder to get it but I'm so glad I did.

    Oh yeah, being awake and upright can be *way* overrated.

  2. Awww hun, I wish I knew what to say. I wish I had some magical cure for you, for all of us. I love you, and you're always in my thoughts and prayers. I wish I could physically do something for you....but I can't. However, I am always here for you, no matter what. Please remember that. Sending you lots of love and gentle hugs!