Disability Update: Did as the letter said and called.

I received a letter from SSDI the other day asking me to call and answer a few more questions and I got that knocked out today.  The gentleman I spoke with said the doctors reviewing my file had a couple of more questions for me, but then he couldn’t find the questions right away and there were several long pauses while he fought with his computer.  Meanwhile, I’m starting to get crampy again.  While Mr. Evaluator is playing hide-n-go-seek with my file, I’m sweating bullets for fear of having to make another potty run!  If I asked the man to hold on or to let me call him back, surely he would think I’m putting on a show, so I just kept my mouth shut and hoped he would hurry up.  Now come on…. how much more outrageous can things get for me!  I hadn’t had one pain, twinge, cramp, or even air bubble in my gut for a couple hours when I called and the second I get on the phone… WHAM!

When he finally found his notes, he said the doctor would like to know if I have seen any specialists for my depression and anxiety symptoms and what treatments I’ve had.  I explained that I had not seen a specialist but that I had been on a few anti-depressants and anti-anxiety meds that made my symptoms worse.  Then I probably said too much by elaborating that now I have to use a lot of self-help methods like avoiding stressful situations, metitation, journaling (sounds better than blogging), etc.  He moved on to part two, but again, asked me to hold on for a few minutes.  By that time, I was doubled over!  You don’t know how tempted I was to say, “Now see!  This is why I don’t have a job!  Who knows what symptom is going to hit when and the only way to deal with the majority of them is to not go more than 50 ft from the toilet or the bed.”  Finally he says that he found the doctors’ notes, but that he also found the questionaire my husband completed and that it actually answered everything the doctors needed to know.  He then speculated that the doctors had simply over-looked it and would make note of it being in my file. 

So all in all, the man seemed rather nice.  I appreciated that he was very well-spoken and easy to hear and understand.  I just hate that I picked such a horrible time to call him!  But I swear, the moment I dialed the number I really didn’t have anything going on stomach-wise.  Shortly after getting off the phone, I had a bout of anxiousness.  I was very nervous that my whole claim may hinge on the fact that I’m not seeing a specialist for my depression and anxiety and even worse, what Owen had to say about my level of disability and illness.  Yes, my claim may rest on the shoulders of the one person in this world who understands my illness the least.

I was told that a decision should be reached shortly and that they would be in touch if any further information was required.  I’m thinking “just deny me already so I can get an attorney and do this all the right way.”  I don’t even know if I filled the forms out correctly at this point!  Think about it… most people hire an accountant to help them file for taxes, but you can’t hire an attorney until you’ve already filed and been denied SSDI.  That’s like saying, “You can’t have help with your taxes until you screw up, get audited, and have to pay some penalties.” 

I’ll share more as it comes!

Diagnosis X: “Under Pressure” Episode Review

This episode aired on September 26th and the two conditions featured were  polyarteritis nodosa and endocarditis.

A woman presents with chronic abdominal pain and reports having some achiness and feeling tired.  While she was relaying what previous doctors had done for her, her husband mentions the suggestion from one doctor that it is psychosomatic.  The doctors decided to start with a barium study to get a look at her digestive system, but everything looked normal.  Meanwhile, her lab work came back showing blood and protein in her urine, indicative of kidney failure.  Doctor Tung begins to think in terms of systemic illness and opts to test for Lupus, but again, results are negative.  However, the patient’s creatinine levels were extremely elevated, suggesting even more profound kidney failure.  A few more tests were done, but doctors weren’t pointed into the right direction until a more thorough exam of the patient revealed a symmetrical petechial rash previously hidden by her socks.  Petechia is often associated with vasculitis, an inflammation of the blood vessels, and Dr. Tung ordered a mesenteric angiogram in which dye would be injected into veins and arteries in the patient’s abdomen.  Finally, this test provided conclusive evidence that the patient suffered from polyarteritis nodosa, or PAN.

Another patient was a professional volleyball player who had been brought to the ER for a possible broken wrist.  There’s a lot of emphasis placed on the idea that she is a professional athlete with better things to do than hang out in an ER.  As she is getting ready to leave, she’s asked to sign some papers and her arm is far too weak.  Doctors had to convince her to stay for further tests and with great reluctance, she finally agrees to a CT scan.  When doctors return to tell her the scan was normal, they find their patient preparing to leave and she signs herself out.  Later that same day, the volleyball player returned with right sided paralysis.  An MRI revealed a massive stroke, but doctors were not clear on the cause.  In patients falling in the age group of their current patient, there were a few possible causes, one of which was endocarditis.  As bruising can be associated with endocarditis and the patient did have bruising on her hands that was originally thought to be from playing volleyball, the doctors re-examined the woman.  They concluded the bruises on her hands were Janeway lesions and also found Roth’s Spots in her eyes.  All of the symptoms suggested an infection in the tricuspid valve of the heart that can often be caused by drug use and the patient, while recovering from valve replacement surgery, confirmed use of steroids by injection.

That Reprieve Was Short Lived

By last reports, my long “flare” had come to an end but after only a couple days of living it up, I came down with a horrible cold.  Just a couple of days ago, I finally starting seeing some improvement on that front and now today, I wake up to A FREAKIN RASH!  For those keeping up, I only get these rashes during flares.  So now I guess it wasn’t the cold leaving me so “unmotivated” these past couple of days.

I’ve spent the majority of my morning in the bathroom.  Oh yes folks… the gut stuff has come back too!  My stomach is aching, rumbling, and grumbling with good ole diarrhea cramps, but it has been an unproductive morning in that regard. 

Honestly, I want to just crawl back in bed and have myself a good long cry.  This was just a cruel hoax, it seems!  Since my flare had ended, I made so many plans and kept rushing through my days in hopes the next one would be “cold-free” and I could get on with things.  And now I’m right back to having to worry less about what things I “want” to do and fear more the things I can’t do.  I’ve already tried the little pep talk about some people not getting any breaks from their illness and how I should consider myself fortunate for even the small ones, but SOME PEOPLE ARE WELL NEARLY EVERY DAMN DAY OF THEIR LIVES!  What’s fortunate about having any less than that?

This morning, I want to write each and every doctor I’ve seen a letter telling them to go straight to hell!  Damn them all for not being able to do what they are trained to do!  And damn them to hell for trying to make me feel like I’m the reason they have so miserably failed at their job!  Oh man….. get me off this subject before I blow a gasket!