Friday, July 30, 2010

Holy Social Security, Batman!

I got a call today that I have been approved for state disability benefits.

I don't believe it.  I really don't.  I'm in shock.  I only applied in March and everyone told me expect to wait a year to hear their decision.  Expect to be denied the first time.  Everyone gets denied the first time.  Expect to have to appeal in court at least once.  Expect to wait around 2 years to finally win your claim.

But I got a call today saying that my claim had been approved and I figured, "Cool!  My claim has been approved to move on the next level.  Time to go see their scary Social Security doctors." 

And she asked if I had a few minutes and I said of course.  We went back over all the stuff I had told them to make sure nothing had changed.  Then she said I would start receiving a check for X amount on the first of the month.  And I thought, WAIT A SECOND.  WHAT THE HELL?

So I let her continue to talk and wish me a wonderful weekend and I did the same and I just sat there in silence for a second.  I brought my notebook over to M and pointed to the note that said, "Monthly check for $X" and then we both flipped the hell out in such a good way. 

I ended up calling Social Security right back because I had questions like, "Am I getting health insurance too?" (I am!) that I hadn't even thought to ask because I was so completely speechless.

I'm convinced this is some paperwork mistake that they will figure out and revoke once they see that I never underwent an eval from their doctors but maybe I'm just paranoid.

Really I'm just surprised and shocked and elated and so happy that I can start paying for my own groceries and things like that.  Things I haven't been able to do for almost two years now. 

I STILL don't have the words to express how this makes me feel.  I really needed this.  I had been feeling so overwhelmed and bogged down and ready to sink.
Thank you, Universe.

Thursday, July 29, 2010

For real now--this is kind of insane.

This was my day today.  And I'm not done.  (Mind you, I am also on prednisone and in full on mood swings that occasionally border on 'Roid Rage.  I'm really not in any shape for them to be doing this to me.)

Me to Dr. K:  The rehab doctor was a flop.  What should I do?

Dr. K: Make an appointment with a neurologist at Tufts, but you won't get in quick so if you can see a local neurologist sooner, do that.

Me:  Deal.

Me to Tufts Neuro:  Appointment with a neurologist, please.

Tufts Neuro: Why?

Me: [insert most concise explanation of my hand problem that I can manage]

Tufts Neuro:  September 20th.

Me:  Okay, great!  Thanks.

Me to New England Neuro:  Appointment with a neurologist, please.

NE Neuro: Who are you?

Me: Me.

NE Neuro:  Ah, you see Dr. C.  I'll transfer you.

Me:  No, wait!  I saw Dr. C for a completely different reason and he's not a neurologist.  My rheumotologist asked me to see a neurologist.

NE Neuro:  I'll transfer you to Dr. C's secretary.

Me:  :(

Dr. C's secretary:  How can I help you?

Me:  Uhhhhhh.  I need an appointment with a neurologist?

Dr. C's secretary: Why?

Me: [insert most concise explanation of my hand problem that I can manage]

Dr. C's secretary:  Who are you?

Me:  Me.

Dr. C's secretary:  Ah, you saw Dr C last year.

Me:  *headdesk*  Yes, but I don't want to see him now.  I've been asked to make an appointment with a neurologist and Dr C is a physiatrist.  So I'm not quite sure why I'm talking to you...

Dr. C's secretary:  Do you need occupational therapy?

Me:  No, I need to see a neurologist.

Dr. C's secretary: Then I don't know why you were transferred to me. 

Me:  Me either.

Dr. C's secretary:  I'll transfer you.

NE Neuro:  How can I help you?

Me:  Hi, I'm Me.  I need to make an appointment with a neurologist.  I know I've seen Dr. C before, but I don't need or want to see him now.  I need to see a neurologist.

NE Neuro:  Why?

Me: [insert most concise explanation of my hand problem that I can manage]

NE Neuro:  You're going to have to have your doctor's office call and make the appointment for you.

Me: Really?

NE Neuro:  Yes, just call and tell them that we need their office to set up the appointment with us.

Me:  Okay.

Me to Tufts:  Hi, Dr K asked me to make an appointment with a neurologist and I just talked to their office and they said they need your office to call and set up my appointment and I don't know why and I'm sorry to bother you.  The office is NE Neuro and I can give you their number.

Tufts:  Huh?

Me:  I know, but I tried to make an appointment but they told me to call you.

Tufts:  Tufts Neuro is located on the 12th floor and their number is 617-

Me:  No, I know that.  I'm not talking about Neurology at Tufts--I already have an appointment with them all set.  I'm trying to make an appointment with NE Neuro in [City].  I can give you their number.

Tufts:  Okay.  Well, I'll call upstairs to Neurology and call you back.

Me:  No, please don't.

Tufts:  *Click*

Tufts calling back:  Hi...I called Neurology and they said you already have an appointment there.

Me:  Yes, that's what I told you.  I'm talking about NE Neuro.

Tufts:  Oh.  I didn't understand.  Do you have their number?

Me:  [Number]

Tufts calling back:  Hi, they weren't sure why I was calling them but we set you up something with Dr. C because you had seen him before.

Me: Noooo!  Dr C isn't a neurologist! 

Tufts:  Oh.  huh?

Me:  He's a physiatrist! I need something with a neurologist!

Tufts:  Oh.  I'm confused.  I'll call them back.

Me:  GAH!!!!!!!

Me calling NE Neuro anyway:  Hi, I'm really sorry but I called earlier because I need to set up an appointment with a neurologist but they told me my doctor's office had to call and they did but they wanted to set up something with Dr C because I've seen him before but he's not a neurologist so please pretend I didn't see him because I don't want to see him again because I need to see a neurologist and I just wanted to let your office know that when my doctor's office calls again that what I need is to have an appointment made with a neurologist.

NE Neuro:  I can just set up an appointment for you.

Me:  Really??  Yes, please!

NE Neuro:  August 11th with Dr. V. 

Me:  ...Thank you.

Me:  *Shutting my phone off for a few hours*

My Voicemail:

Tufts:  Hi, I called NE Neuro again and set up an appointment with a doctor for Aug 3rd.  They seemed confused so please call me back to confirm this.

NE Neuro:  Hi, Tufts called and wanted to make an appointment, but you already had one set up so we didn't.  Please call us back to confirm.

Who's lying!?


Saturday, July 10, 2010

Results are in--and survey says...

They still don't know.  Saw Dr. K in Boston and the end result is that we are still dealing with "A big question mark."


The details.

We went back over my test results.

  • Bloodwork--all normal except for an elevated ANA.  only 1:320, still homogeneous.
  •  Xrays (Hands and chest)--normal.
  •  Barium swallow--my esophagus is working properly (yay!) though it looks like I have a hiatal hernia.
  • PFT--I have an abnormal amount of air left in my lungs after I exhale, but he said that something like that doesn't normally show up alone but in a group of a bunch of other abnormalities.--Bottom line, doc says that a spinal fusion like mine could result in abnormal lung volume.  (I don't get that, but whatever.)
    • Bone scan-- There was mild symmetric radiotracer uptake in my wrists and diffuse increased radiotracer uptake in my hands and fingers.  Dr. K described my hands/fingers as showing up patchy.  --Radiology said this would be consistent with early Reflex Sympathetic Dystrophy.

      I don't understand what the results of the bone scan really mean.   I know the first part means my wrists are slightly inflamed.  Got that. But the second part?  He mentioned something about the bone metabolizing faster than normal.   Why?  What does that mean for my bones?  What are they doing?  Are they growing?  Longer?  Wider?  Doesn't anybody else feel like this is a problem worth more than passing mention?

      Anyway.  The bone scan seems to be pushing us back towards the RSD and slightly away from Scleroderma.  But not definitively.  Dr. K said I could have RSD or very early stage Scleroderma or Undifferentiated Connective Tissue Disease.  OR I could have RSD and Scleroderma.  OR I could have RSD and Undifferentiated Connective Tissue Disease.  He is not willing to say anything for sure.

      Treatment?  Double my gabapentin and try a short round of steroids.  See a Rehab doctor (not 100% sure for what purpose).  Appointment for local rehab doc (Dr. K the 2nd) on the 26th.  See Dr. K in a month to likely repeat bloodwork for ANA.  He also wants me to see a Neurologist, but he didn't want to bombard me.

      It's the ANA that's giving him trouble.  They keep repeating it.  My first one was 1:1260.  WAY HIGH.  And that's what keeps Dr. K from ruling out autoimmune diseases as an issue since having an ANA of 1:320 isn't abnormal for some people to have just because.  No autoimmune disease, they've just got it for no reason.

      Needless to say, I was crushed by yet another We don't know.  Dr. K said that hopefully the condition will make itself known as it progresses, but let's let it get worse until we can easily see what it is is not my idea of a fun time.  After seeing Dr. K I was exhausted.  Tired.  Ready to just stop seeing doctors for a year or so.  Scooped out.  Like someone had taken a melon-baller and located all the places I store my Strength, Perseverance, and Dark Humor Coping Skills and scooped them out while leaving my Mope Drive, Tear Machine,  and Feeling Fucking Miserable Generator intact.  All I wanted to do was lay in bed and cry like a 13 year old who has just been dumped by her first kiss the week before the dance.

      I was a mess the first few days, but I'm back.  Though, I've come back with the sentiment that maybe I should stop having this "hope" thing when I go so doctors because it just hurts too damn much to be let down time after time.  Maybe I should start expecting to not get answers.  That seems to work for M.

      I saw my Primary Care, Dr. B, right before I saw Dr. K and I said that I was really hoping for some answers.  Dr. B even told me to not get my hopes up.  He said that Rheumatology as a study is not the same field of medicine it was 10 years ago.

      He said, "Ten years ago, they'd diagnosis you.  Today, the pervading new theory is that all Autoimmune diseases are really just one disease that presents differently.  So they don't diagnosis you.   Maybe it's Lupus and Scleroderma and something else all mixed together."

      So the new theory says they can't put their foot down and say what it is--but shit, that really leaves the patient in a bind, doesn't it?  Even if you extract the emotional roller coaster we are put on every time, legally that blows.  For those of us who can't work, try telling Social Security that you are disabled because of... the doctors aren't sure yet.  It could be a bunch of things.  Please help me anyway?

      I'm on the doubled dose of gabapentin.  Not a whole lot of difference.  My hands are a little better some days.  Some days they are swollen and useless.  My spinal stenosis is getting worse and I can't keep my shoulders in place for the life of me.  I start the steroids next week.  I'm hoping to enter into August as buff and pumped up as a Pro-Wrestler.