Expedited Hearing Request Filed –FINALLY!

About a month ago, my doctor and I had a long discussion about my disability claim and he asked me to have my lawyer call him so he could work “with” them on getting me approved.  My condition is getting worse and I need the insurance as ours only covers 70% on medical tests and labs (meaning I’d still owe more than I can afford to pay on an MRI or some of the other tests I need to have done).  So, I called my lawyer the next day and gave his paralegal my doctor’s number and explained that he wanted to speak with them.  She told me she would call and get the info she needed to file for an expedited hearing.  For weeks, I waited around to hear if I’ll get rushed in or still have to wait, then g0t a letter from my lawyer stating what actions they had taken with my case…. no mention of the filing for an expedited hearing!

So I called the paralegal again and learn they haven’t filed anything!!  When I asked why, at first she says, “I’m waiting for your doctor’s office to send me your records.”  Huh?  What records?  You already have my records, save the last visit.  Why are we waiting on records and why are waiting for a month when he can fax them instantly?  (she was lying)  I asked if she had spoken with my doctor and she said, “No.  I didn’t feel it was necessary.”  WTF!!  I pointed out that in our last conversation I told her HE wanted to speak with HER and I even gave her his private line number.  Then she says, “Well I called his office, but they wouldn’t let me speak with him.”  Another LIE!  The number he gave me is his office line and it goes straight to him or his voicemail… the office staff doesn’t answer that line.  And UGGGHHH the ATTITUDE!!  Cutting me off mid-sentence… talking hateful… ENOUGH!  I told her I wanted to speak with my attorney and she gave me his voicemail.  I’m a paralegal (by degree… never worked much in a law office) and I would NEVER treat a client the way I was treated.

Two days later, I find a copy of the hearing request in my mailbox, walk in the house to read it and half way through, my attorney finally returns my call.  I was still pissed so I told him exactly what happened and he apologized numerous times and will make sure she hasn’t nothing else to do with my case.  Now why does everything have to be so complicated for me?  First, I get strapped with a disease that no one understands and now I’ve got an attorney whose office is sorrier than any I’ve seen and I’m having to fight to get anywhere with them, too.

But on the up-side… we did FINALLY get the request filed and I’m hoping to hear something in the next few weeks.  Even if I don’t get it expedited, my attorney says the wait has gotten shorter and I’ll likely get a hearing in the spring.  While that is still a long way off, at least I’m seeing the light at the end of the tunnel and it helps.

Long time, no post.

Wow!  Has it really been eight months since my last post?  I got a comment today from someone who dropped by this blog and, honestly, before that I had forgotten about this little corner of my world.  Since my last post, a lot has happened, but not a lot has changed, if that makes sense.  Let me see if I can bring us up to speed…

With all the balls I had up in the air with my illness, it is small wonder a lot of them got dropped.  I’d racked up several thousand in doctor bills over the lipoatrophy and still had no answers, so out of frustration, cancelled a bunch of doctor appointments.  I did continue to see me rheumy at Duke, but opted to focus on some issues we might could actually do something about.  One objective was getting my weight under control.  He wrote me a script for Phentermine and I wasn’t optimistic.  A couple of weeks later, I noticed the strangest thing… I wasn’t having god-awful bouts of diarrhea anymore!  I’d also stopped gaining weight and even dropped a few pounds, but that pales in comparison to NOT having DIARRHEA!  The down-side is that I can only take this medicine for a couple of months, then go off for a month, then back on.  The med itself isn’t the safest and after a while, I stopped losing weight, but we have no idea how this particular medication is helping the stomach issues and therefore have no clue as to what safer alternative med he might could prescribe.  Might all be moot anyway.  I started another med that seems to cause diarrhea, despite still being on the phentermine, but more on that later.

I also had to stop taking Plaquenil.  I started noticing these episodes of what I could only describe as dizziness.  At times, it seemed like my eyes were working like a digital zoom camera lens and when I looked down at my feet, I couldn’t determine how far the ground was from my foot mid-step.  Turns out, a very rare side effect of the med is problems with the pupils’ dilation, causing them to dilate and constrict too slowly.

Meanwhile, a new area of lipoatrophy started higher up on my rib cage, just below the outside of my breast.  The area on my leg constantly feels bruised and aches when I do a lot of walking now.  The area around my waist is the worst.  I have a lot of pain and stiffness in my back, just below my ribs.  The fat around the site feels like gristle and all my pants slip down into the groove and irritates it.  No pain yet in the new area.  With the lipo stuff spreading like it is, knowing it can’t be reversed, and not knowing what to expect with it down the road, my rheumy decided to go ahead and start me on the mild immunosuppressant Methotrexate.  At the dose I’m using, it should act more as an anti-inflammatory, with our goal being to stop the spread of the lipoatrophy and potential bonus result of improving the fatigue or pain issues, as well.

I told my doctor about cancelling all my other appointments, but now with a third area of lipoatrophy starting and blood work not improving, we agreed that I would at least see the dermatologist who might can figure out a better course of action.  My “working diagnosis” at this point is “Undifferentiated Connective Tissue Disease.”  But like I said, not really any change.

In other news, we’ve had a lot going on at home!  I am thrilled to announce we’ve had two new additions to the family… Milky Way and Dolci (dohl-chee).  By the names you can guess they aren’t children, but would you believe Milky Way is a pony and Dolci is a horse?  Yep… back to horsing around!

Here’s some pics…

Lipoatrophy Photos

Yes, I know… a fat chick with stretch marks, posing in her underwear isn’t something most of you want to see, but these photos are to demonstrate the lipoatrophy (at least that’s what we think it is) that’s happening to my body.  While it is a rare condition, there might be other folks out there who have this, but are too embarrassed or unsure to ask about it.

These first two pictures show the lipoatrophy on my left thigh (left photo) as compared to the right thigh (right photo).  You can also see some dimpling on the right thigh, which was also there on the left prior to the lipoatrophy.  It is only now more pronounced on the left thigh and melds into the lipoatrophy area.

The next photos show my right side (left photo) compared to my left side (left photo).  The darker looking band on the right side is the area in question.  The photos don’t really show the deepness of the depression basically just looks darker in color.

The next two photos give a better idea of the depth of the depression.

Sent Neckid Pics to a Doctor!

Ok… they weren’t really neckid’ pics, but pretty close.  This issue with the lipoatrophy has got me bent out of frame so I decided to do something more proactive.  It has been my experience that doctors put a lot of stock in published articles from other doctors, so I found as many as I could online relating to lipoatrophy and looked for the author/doctor of such articles.  I picked the doctor who seemed to be more focused on the type I seem to have, then tracked him down!  I found him in a directory for a university medical center and got his office email address from there.  Then, I sent him a brief email explaining my situation and about three hours later, he called me! 

While I doubt this will work for all people in all situations, this is twice now that it has worked for me.  I first did this when I couldn’t get any answers about eosinophilia from my doctors.  I found the doctor who was responsible for all those articles online I was reading, sent him an email, and he called back the next day.  He turned out to be one of the world’s leading authorities on eosinophilic disease and I learned more from him in that hour-long conversation than I ever learned from any of my own doctors.

So anyway, this lipoatrophy doc had gotten my emails and saw the two MRI images I attached and he asked if I could send some photos, suggesting I wear a two-piece bathing suit.  Right… I’m fat!  Like I would own a two-piece!  But I put all shame aside and took some photos in my bloomers (with hubby’s help –and didn’t even have to beg or endure sighs of boredom).  The doctor starts talking as if I’m planning to see him in the near future and I was happy when he finally asked where I am, ha, ha.  He’s in Texas and I’m in NC!  So on top of requesting the pics, he also got my address and said his nurse would be sending me some info and a blood testing kit, seeing what we could knock out before I come there.  Er… uh… ok.  Shhhh!  Just play along, boys and girls.  Crossing my fingers that this long-distance relationship will work!  I can’t afford to go all the way out to Texas and I absolutely refuse to fly, so that would not be do-able.

Newly inspired, I’m also going to share some of the pics here on my blog.  Hope that doesn’t come back to bite me, someday, ha, ha.

Saw Duke Neuro and Still as Confused as Ever

My trip to the doctor is somewhat over-shadowed by my husband proving, once again, that I’m truly in this alone.  The plan was for him to make the trip to Duke with me, but come time to leave he was nowhere to be found.  His car was here, so I waited around a few minutes thinking he might have went to get the trash cans from the curb or something, but that wasn’t the case.  I didn’t want to be late for my appt. and having no clue where he was, I let the dogs out one last time and then I saw him… at the neighbors’, cutting down trees, not showered or dressed or in any way ready to go.  My heart just sunk.  One minute I’m getting showered and dressed for my appt. and the next, my husband is MIA with not so much as one word about where he was going.  And it is really insult to injury when you consider his going to doctor appts. with me was one of the things he promised to do in order to show me a little more support with all this mess.  And it happened to be for the neighbor he like to drink beer and forget he has a family with. 

So I leave my driveway in tears and it was a full 15 minutes before he even noticed the Jeep was gone, I guess, because that’s when he called my cell phone asking where I was.  Now… to top it all off… he was mad and yelling at me on the phone for not going down there and getting him!  He’s a grown fucking man who knew he was supposed to be leaving at a certain time and just didn’t give a shit!  I was already running 10 minutes behind because I kept expecting him to walk in at any moment and there was no way I could have waited for him to take a shower and put on clean clothes anyway.  What a fucking asshole!

So I had a nice two-hour drive with the music thumping to get my head in the right place and focused on the doctor visit again, at least.  I really liked the doctor I saw, but once again… NO ANSWERS or even really good guesses.  He said the doctor who referred me (Duke Rheumatologist) suspected myopathy, but that was clearly ruled out by the other tests, in the neurologist’s mind.  At this time, he feels a muscle biopsy isn’t going to tell us anything because it mostly answers the question “what caused the damage” and with no evidence of muscle “damage,” there’s really no point.  I have to say that I agree.  The EMG was normal and the MRI showed a very normal looking muscle so why go through something painful on a slim-to-none-chance it will tell us anything?

Then we started discussing the lipoatrophy and he looked at the MRI for that specific area.  Once again, it was something he had never seen before and something he couldn’t explain.  So what is that… like five doctors now that have no clue what it is?  He also noticed that my lower leg muscles look extremely well defined (for a fat chick, especially) and even mistook that area for the lipoatrophy area in question.  I told him I thought my legs looked different, but attributed it to aging, then the thigh thing showed up and now I’m not so sure.  I also told him I had read where some autoimmune disorders can cause lipoatrophy, but never could get clear info on which ones or by what mechanism, so he said he would look into that for me.  In the meantime, the ball is back in the rheumatologist’s court.

At this point, I’m feeling VERY frustrated about all of this again.  My disability lawyer said doctors try to apply things to patients that they know about and understand and if I’m one of those patients unlucky enough to have something that hasn’t been well documented, studied, named, and published a hundred times over, I’m not likely to get much out of them –and I believe he’s right.  While I won’t say all hope is gone, I just really expected more out of this relationship with Duke.  I fully expected to finally have the experience of a doctor saying, “Oh yeah, I’ve seen this before.  What you have is ____.”  Instead, I’m back in that roundabout on the highway of medicine where the specialists can’t even decide which specialist should be attempting to treat me.

Which is the Bigger Problem: Family or Guilt?

I went to meet with my disability lawyer on Friday and he asked me a question I’m use to hearing:  “So what would you say your greatest difficulty is?”  The wheels in my head started spinning and instead of settling on “fatigue,” I flashed back to the opening of the TV show “The Brady Bunch” where all of their head shots appear in the blocks, only it was my family’s faces, ha, ha.  What can I say… it has been weighing on my mind for a while.

I am constantly arguing with my daughter over how little I do for her.  She feels I should be ready, willing, and able to keep my grandson whenever the need arises and I’m simply not.  He’s two-years-old and very demanding so even an hour with him leaves me drained.  On top of that, the times she really needs me to babysit are times when I also have my own five-year-old to keep up with and the two of them don’t play well together, for the most part.  I feel I’m constantly having to scold one or the other of them and it really isn’t fair to either of them, only adding to the stress of it, too boot.  If it is late at night, my son has to be in bed at a certain time and that’s hard to do when her son goes to bed much later and neither of them want to be left alone.  I can’t be in two places at once!  Anyway… we fight about it constantly.  She asks… I say no… toe to toe we go.  She throws up to me that other parents do this for their kids and accuses me of not wanting to help and using my illness as a lame excuse.  There was a point in time where I didn’t tell my daughter “no” and did a lot of suffering to accommodate her.  Only now, I have other people to consider as well and have learned to say no when I need to.  Still, I feel a tremendous amount of guilt for not being one of those parents who devotes their lives to their grandkids.  I also feel a lot of resentment toward her for not understanding what it is like for me.

Then there’s my husband.  Shoot… I could devote multiple posts about that man’s attitude about my illness!  When things go smoothly, he seems somewhat understanding of my “condition.”  HA!  What timing!  He just walked in my room and asked me what I’m blogging about, ha, ha!  And I told him, too!  No holds barred!  It is also a case of life imitating art!  Last night on ”House, MD” the episode was about a patient who blogs and her husband was mad that she told all their business to total strangers.  Needless to say, I was dying with laughter on the inside when my husband says, “Why do you have to write stuff about me?”  I assured him that no one he knows reads my blog and he was still not happy about it.  Guess he would prefer me to suffer in silence.

So we had a brief discussion about how he feels he is supportive, despite the fact that he’s gone along with me once out of 50+ doctor visits and complains, every time we argue, that I don’t help out enough, need to get a job, and take too many naps.  He can’t even think of half of the symptoms I live with every day and the ones he can recall, he spends more time trying to explain away as my over-reacting to something that’s normal.  And today offers up the prime example… I mentioned how frustrating it was that while I was on hold with the doctor’s office today, my arm that was holding my cell phone to my ear fatigued out, started burning, then basically went numb in the course of about 4 minutes.  His response… “That happens to everyone.”  WHATEVER!  I guess I should mention this wasn’t an argument, per say.  We were both really pleasant about it and he even refilled my tea glass on his way back out of the bedroom.  I wonder if he even realizes that all he actually did was add to my frustration?  I mean, if he really wants to know what I blog about, why not read it?  Oh yeah… I know why… cause that would actually require time and energy.

Now, one would think I would at least have my mother in my corner, but she’s about as wishy-washy as my husband.  When I went to see the lawyer the other day, she actually said, “Lie if you have to.”  Number one, I’m not a liar and I’m not a cheat, so it struck me totally wrong that my mother would even suggest that I somehow misrepresent myself in order to cash in with SSDI.  What’s more, if she truly understood how “bad off” I am, she would know there’s no reason to be dishonest.  I was left feeling hurt, pissed, and confused all at once.

Again, I could probably write volumes about how little support I feel I have at home, but that probably wouldn’t be so bad if I didn’t also have this issue with guilt.  I feel horrible when I have to disappoint someone, but I can live with that a lot easier than I can with profound pain, so life will just go on as it is, I’m afraid.  I still can’t help but imagine how much simpler life would be if I lived alone in a little cabin in the woods with no one to care for but myself.  I even mentioned that to my husband and he said, “So are you saying that’s what you want?”  but that’s not what I’m saying at all.  I want to be here with my family and that is the only reason I do all that I do and live the way I live.  Yes, my life would be far easier if I didn’t have a family to consider, but my family is my life!

Another Screw-Up at the Dr.’s Office

So this morning, I woke up at 5:30 a.m., forced my aching, tired body to take a shower, and then proceeded to get my son ready for his specialist appointment today.  We hurried out the door to make it in time for an 8:30 a.m. appointment, only to get lost simply by taking the wrong walkway/corridor out of the parking garage and wound up spending another 20 minutes walking around the monstrous hospital trying to figure out where we wer supposed to be.  And in case you didn’t know, I have a seriously hard time with walking!  When we finally arrived at the right place, the receptionist said she could not find our son’s appointment in the computer!  That led to another 20 minutes or so of waiting around for them to figure things out.

Turns out, our doctor’s office had faxed over the information and somehow or another got an appointment date and time, but the person who they spoke with at the specialist’s office somehow failed to input that into the computer system.  Now we get to wait YET AGAIN to get another appointment.  UGHHH!  What a waste of time and energy!