so much stuff not enough energy to tell it

it's a lot. a lot  a lot a lot.

so tired.  mri results revealed severe arthritis in my neck and lower back.  not new, just worse......a lot worse.  they will set me up for a epidural for my neck, but say they must do an EMG before they can set me  up for the lower spinal epidural.  what ever.......seriously, first they need x-rays, then they must do mri's, then a return for mri results, now they MUST do an EMG to meet with insurance expectations.  is this actually true or just another way to sock it to medicare for more testing/more money?  they know i need the epidural but again insist this other test is needed.  so i leave being told that i will get a call to schedule the upper epidural and a call to schedule the EMG.  oh God.......can't they relieve the pain then play their testing games ad nauseum infinitum?  frustrated and hurting.

ruthann (the P.A.) and i had it out just a bit......when i brought up the last visit she interrupted me to give me some advice about not getting overly caught up in things......to let stuff go, to just move on.  i said i don't think it unfair to address that based on that last visit i left feeling utterly hopeless.  she told me twice how i had to wait, there was nothing that could be done to move things more quickly along.  left crying with an appointment card telling me to come back at the end of July.  END of JULY......at that point wait another SIX WEEKS.  i took it upon myself to contact my insurance and get things moving. 

so ruthann says that yes as soon as she got that ok she approved the forms they needed.......as though she was on top of best care for ruthie.  then she goes on further, she tells me that she told me to call insurance and try to see if they could he lp.  she never did that.......and now she says this is my biggest problem, that she definitely said to call them.  oh my God.  if she had given me an ounce of encouragement or hope i would have remembered, i dissolved into tears because she said there was nothing to do but  bide my time, had to wait, cause nobody is a special case wh en it comes to insurance, she drilled that into my poor tired brain. 

i said we will have to agree to disagree, i remember her telling me twice about how insurance works, that no one gets approved with out that waiting period of expected traditional therapy first. no one......she stressed that repeatedly.  and now she wants to tell me she was a good guy?  miss encourager, miss have my back?  no she didn't.  i didn't freak out at all, but i stood my ground. after relaying what she said and what i said, she tells me she also said the bit about calling insurance.  i said you may have meant to, maybe you thought you did but you were distracted.......you gave me zero hope and you were didn't soften it at all.......i felt so alone.  so ho peless...........so she says perhaps you should go to another orthopedic group for help?  i said that's your solution?  that's what you do. send me away?  seriously.......i take accountability for myself and my actions, why not just agree that we disagree?  you see dozens of patients, I only saw you for this issue and that day is etched in my head........why can't you mull over the idea that sometimes things don't get said, things don't happen that perhaps should?  she nodded her head.....and with that we moved on and talked what comes next.   now she says i have to have an EMG.  of course, another test. 

they are to call me about the EMG for the lower back and to schedule the upper epidural.....soon.  that's the best they can do.......everything with them is soon, which means more time, more trips, more waiting.  give me relief PLEASE.. she knows they will be doing the epidurals, so let's do them.  if the emg has to be done then ok, but why didn't they mention that test before?  she also said they may have to refer me out to another orthopedic office for another pain relief procedure.......its' something that more or less turns off the pain places for about a year at a time.  bottom line i have severe arthritis pain, upper and lower, with bulging discs and other stuff.  i can't remember it all......going in she had the serious face, so i asked if i needed to be super brave or just regular brave, she said regular brave and i felt that whoosh of relief.....it's serious but not so serious that there is no help to be had.  waiting is a killer for this girl....a spirit killer.  need relief already...........if i were a horse they would have either set the leg or put me down by now. 

moving on.........get it all out r uthie.  doing it right here, hope it helps me.  so i am sitting there talking to ruthann the phys. asst. and she is saying how she can't even begin to imagine what it's like to live with all the conditons i have.......she is talking and i am fading fast.  i hear her start again and wonder if she knows she is repeating herself cause she is again saying she can't emagine what it's like to live with all the conditions i have and so on and so forth........and i don't say anything cause that familiar giant wall of fatigue is smacking me in the face........she gives up i guess........and says she likes my sweater.  i say thank you, and i confide to her that i found it on a sale rack for $9.  such a great bargain.....yay!  so now we talk shopping deals she got and things get lighter ......not so serious, safe talk about little things.  it helped us both i think........but when i get in my car i feel like i'm wonking out.......i drive home and find myself pulling into the nail salon.  warm water, bubbles, sitting in that chair relaxing........but i go in and can't seem to keep up my end of the conversation.  she is kind, she leads me to a chair to sit, gets cold water and has that c oncerned look in her eyes........she ends up telling me to go home.  she says to come back after i get some rest.  she walks me out to my car.......she helps buckle me in.  uh oh, she can see it coming to get me too............i get home, go inside, sit in mychair and wake up at 11:30.  i sat down around 3:30..........wipe out!!!!!!!  so cold, so wonky........crawled into bed.  woke at 7:30.........feeling like refried shredded crud on a stick.  or in nicer terms not well.  .........my hands are icy cold, my feet are icy too......eyes are heavy......neck feels thick tender glands muscles aches........it's here, another crash hitting my body..........

noticed in my email that the results are back from the lab, so i called the nu rheumy and asked for a call back to review the findings.  noted that my gammaglobulins levels are low, but couldn't make head or tails out of the rest...........#shouldn'vegonetomedschool.

the phone rings and it's a lady from Gwinnett hospital.  she helps people find support within our county/community and represents Gwinnett Medical Hospital.........her name is sheila.  she hasn't forgotten about me, but now she wants to share what she knows.......she has reached out to everyone she can think of.......she reached out beyond that and in the end she can't find anyone/any group that supports people with our kinds of health issues in my area.  not one group.  no one. she tells me that i should continue to rely on that support group i told her about.......and i reminded her of our initial talk.....i had explained to her that when the format at DS changed people dropped off like flies......it was no longer the easy to use interactive site it had been........it became so difficult to use due to the challenges of health we face, the brain fog, the confusing, difficult no longer user friendly site of before that the very pe ople it needed to help were falling off the sides of the life raft every other day.........hurt my heart for all of us here for such a long time.......that a few of us are still hanging in there, but no it's a losing battle. and to that she sighed and admitted defeat.  i said isn't there a way to initiate support for the chonically ill in our area?  isn't there anyone to tell to get a commitee to help us?  she was quiet.........so that's a no.  another dead end.  another locked door.

......i can't believe how cold my hands are, how achy i am........time to use the hot blaster on the hair blower.  mercy........have to get a perio cleaning on the books, go see the sleep people and get supplies for my cpap machine ........might as well plan a moon landing today while i'm at it..............crashy girls tries so hard to be in care of self, to self advocate, all i want to do is topple over, have a cry.....and sleep .........sleep .......sleep.  but if i conk out i might miss the call from the rheumy.......and from resurgens to schedule stuff.......should i eat candy to rev my engine a bit to keep me awake?  would that even work?  ......doubtful.

amazing how long i can type while half comatose........that last twenty two years of endless hours emailing responses at work.......450 to 500 messages daily........my body still has an autopilot mode when it comes to typing.......fascinating and weird.  i may still be  typing even after i'm gone........my soul will be in heaven but my earthly bits will be tapping away at this keyboard.  ok, even i know it's time to shut up and take a nap.  (i'm) too weird even for me, need a break.......12:01 Wednesday, July 3rd.