My brother gave me a ride to get a chest CT this evening.  When we were about four blocks away from being back at my apartment, BF called and told me that I needed to get home right away; there were two envelopes for me from the Social Security Administration and he was desperate to know what was in them.

These people have kept me in this horrible limbo for what seems like an eternity now.  Six and a half months of not knowing what I was going to do about my rapidly deteriorating financial situation.  My car insurance lapsed and I haven't been driving my car for months now, I've filed for several student loan deferrals on the basis of unemployment, and I've been making my minimum monthly credit card payments with the money I got as graduation gifts, which is now down to about $15.  Luckily I have BF, who has been keeping me warm, fed, and under a roof, but our financial situation has been tight to say the least, especially since I lost my student health care and he put me on his plan through work.  

So I let BF open them and he read them to me over the phone.  One was unimportant, but the second letter stated that I had met the medical criteria for disability benefits.  It felt like taking off a lead sweater.  I don't think a day has gone by since May that I didn't have to face the anxiety of not knowing.  It's been a constant low grumbling in the pit of my stomach.  Just not knowing.  What if they denied me?  What if I had to appeal the ruling and spent the next year fighting with the SSA?  What would I do if it ended badly?  All of those questions never quit their nagging.  I feel lighter, giddy.  

It certainly isn't a windfall, the most I've ever made in a year was about $17k and that was one year, by far not the average.  I'll be collecting less than a thousand dollars a month, but that makes all of the difference in my life right now.  With the eight to nine months of back-benefits that I'll be receiving when I start collecting (paper work, payment setup, and administrative BS all stand between me and my first check) I'll be able to pay off all of the credit card debt that I've racked up in the last year and a half and get my car back on the road.  And the payments will be enough that I can pay all of my monthly bills without having to lean on BF quite so much.  


How supremely awesome.

I also have a couple of big doctors appointments coming up in the next few weeks.  Today I had a high resolution chest CT and they gave me a disk with the images, which, while I can't determine their precise reading, are very cool for the girl who wanted to go to med school.  Tomorrow, I take those images and my medical history to a new dermatologist who will be evaluating me for an autoimmune vasculitis.  I'm pretty damn sure that it's going to require more blood tests and a lung biopsy before I have any answers, but it feels good to be taking that first step.  Then next week, I go to see my new rheumatologist again with the results of the massive panel of blood work that she ordered that will tell us which autoantibodies are floating around in me, the radiologist's report on today's CT, and my pulmonary function tests.  Hopefully all of this blood, radiation, and heavy breathing will give her a more clear picture of what's wrong with me.  Then, the following week I see my pulmonologist again and we will once again assess the stage that my pulmonary hypertension is at and what rate it's progressing at.  I wish I could say that with luck things would be looking better by February, but that isn't what I'm expecting or even really looking for at this point.  I just want to be able to confidently put a name on this mysterious convoluted mess of symptoms that I have.  I don't know if you can appreciate the need to know what it is that you have when things are going wrong left and right unless you've experienced it.  The nearest thing I can compare it to is after finals and before you know your grades when that final was the difference between an A and a C.  The scale is still far broader when your dealing with four or five potential diagnoses, each with different treatment options, life spans, mortality rates, and generally run the spectrum for quality of life and possibility of a cure, but, like I said, that's the nearest that I can come.  You just want to know what the future might hold, no matter what the answer.  The powerlessness sucks, but when you know you can take back a little of that powder, by doing further testing, start doing research, exploring your options, taking new medication, it all makes it feel just a little less chaotic, a little less horrifying than when you have no power except to wait.

So I know a lot more today and I'll know a little more tomorrow and by February I should know a lot more and every new piece of knowledge feels like a victory in and of itself.


  1. Congratulations on getting your SSDI! Did you sign up for direct deposit? When I got approved for SSDI and got my back pay it was put in my account almost immediately. I know that not all states are the same though.
    Also in your letter it should tell you how much your back pay will be and how much your current pay will be. Hey $1000 is a lot better than a lot of others are getting, so you should be proud of that. Some of use have worked lots of hours and made good money too!

    I cannot remember but are you actually seeing a PH Specialist or a Pulmonologist? If you are not seeing a PH Specialist then you need to contact one right away and let them determine if you have PH or not. Also have you had and Right Heart Cath to diagnose your PH or just an Echo? Sorry I cannot remember which it was. LOL!!

    Well glad to see you post again.

  2. Congrats on the SSD!!! I really wish it didn't take so long for people to find out if they are eligible for SSD. You're actually "lucky," if you want to call it that. I know a few people who have waited 2 years to find out if they were going to get it, and have gone through so much in fighting for it. It's so unfair, especially when being sick really wipes everything out of you. BUT, that being said, I am so happy you were approved and you don't have to worry about that anymore!!

    Good luck with all your appts and test results. I hope someone can come up with an answer as to what's going on!!

    Colleen :)