Sleep/or stay in bed

Even if I'm not tired I am forced to stay in bed and sleep as much asp ossible because the bodywide pain is excruciating.  Looking into an mri for the right shoulder arm and hand, the pain has been there for years and a bone is moving in and out of place, I cAN feel it popping.

There's no point in listing all of the symptoms but it's very inhumane.

"First time at the orthopedist"

Never fell asleep last night.  Miranda downstairs banged around so much it sounded like she broke into m apt.  Overall, however, I still have to say this is my best living situation in 2 decades.  I slept well the previous 3 nights.

So, I've arrived and thank goodness it's not too far from a bus stop.

Greeter: "Name?"

me-"elana r Snyder"

greeter-date of birth? (i'm uncertain whether or not she really understands English)

me-june blobbidy blob

after about 4 minutes of staring at her screen

greeter-"spell your name please"

"what's that date of birth?"

Greeter-"YOu aren't in our system"

me-"Well, that's not my fault"

greeter-"what date did you set up the appt.?"

me (are you fucking kidding me?) My appt. is today

she incoherently mentioned something about my email and how she can get me in with a different doc!

me-"You can't get me in today?"  "I'd like to speak to a manager."

greeter-"I got you in today"

The paperwork makes no sense and I ask her if anyone is avail to help me.  She said she would send over an m.a. to help me.  25 minutes have passed and she never sent anyone.  (do u c y I don't trust anybody anymore?)

She sends me over to some window where the second greeter scans the form in without having helped me with what I needed.

All total I was at the office for 3 long ass hours.

The doc was intelligent, but I might as well been speaking French, she just did not at all understand my pain descriptions, so she made me say the same thing over and over.

You are only allowed to present with 2 pain issues in one day.  So I said I want to know why my right shoulder and neck and arm hurt so bad and why the tailbone hurts so bad.

She said the neck is arthritic with denenrative disc disease and bone spurs.  At some point she may try injections with me.  She said I'll have to buy a ring to sit on.  I told her that the pain is still too severe to hold even part time work.

She is sending me to physical therapy.  I will keep you informed.

"Weather/weakness"

This month I have only been going out 4 or 5 days a week.  Some days I am too weak to walk and have to go home.  Yesterday I was only out an hour when I realized I was becoming very weak so I had to head home.  Other days I have to stay in due to the snow and wind.

It has not been much fun although like I said I do have cable for the first time in my life and I am enjoying it immensely.

I have been unable to get to p.t. or o.t. due to weather and other hold backs.  Like I told you the walking and bussing takes everything out of me, so it's rare in winter for me to be out for more then 5 hours a day.

There is no doubt I would be doing many evening activities if I had a car.  I still badly want and need to get to a warmer climate.

"Not fit for a dog"

So, now that I have my own place, I have more days and hours where I'm homebound with these devastating illnesses.

I mean there just is no explaining how inhumane this level of suffering is.  My hands and feet don't work, I can barely stay awake, I can't even stand up in the morning because my feet don't work, have to hang on to walls.

Lifting ur head of the pillow or rolling over in bed are massive feats because of excruciating bone, nerve, joint, muscle pain that never ever leaves....................................

I stayed in all day yesterday, and the only reason I left the house today is because there is no food in the house and I can't really grocery shop with no car.

Brutal with a capital B.

"Myth, if you are poor you need a couselor"

My stress is still at heart attack levels.  I told you i am essentially owned by my landlord, and a slave to public transportation.

As a condition of being housed i am required to get counseling.  The counselor would need to accept medicare or medicaide AND be on a bus line.

Now, having a counselor in and of itself is not the issue.  The issue is that I have this protocol that iam supposed to be following to "have a better life"

I KNOW what I NEED!  AND I KNOW WHEN I NEED IT!

I want my focus to be on pain management and exploring this potential cancer issue, but no, I have to do things in the order that these agencies are asking me to.

I explained this situation to a counselor on the phone and she said it was ludicrous and she can't even imagine having to do things in that order.

"nightmarish symptoms"

The inside top of my right thigh was lit on fire with a match.  By whom, you ask?  It was either the fibromyalgia devil, the post lyme disease devil or the neiuropathy devil.  It hurts beyond belief but is not feasable for me to walk around with an ice pack on it 24/7.

My throat is killing me, I have a migraine............................likely fibromyalgia symptoms as well.....................

There isn't enough "ink on my typewriter" to give you my usual list of symptoms that never goes away, so i won't even try.

I have had about 10 hours total sleep in about 2 weeks...............................

"My approach to your "broken leg"

In the last year or so I have begun to take a completely different approach to my interactions with people who have just injured themselves.  They are, for example, in a, cast, crutches, sling whatever.  I will talk to you for a half hour, and you just want to tell me all about your injury., but I never bother to ask you why you are in this condition.

Why?  Because people like myself with largely invisible disabilities, like arthritis, lyme, fibromyalgia and nerve damage am in excruciating 24/7 pain and you never ask ME about it because i have no obvious "bandage"

If you just injured one body part, and in a month you will be all better-then you have absolutely no idea how we suffer and I'm sure you won't ask, either.