16 08 2010

So my official rejection letter came in the mail this week. My Social Security Disability claim was denied. “While your disease causes some mild discomfort, your attacks are infrequent and do not prevent you from working.” So says the person who’s never met me who sits in a cubicle in some nondescript office building somewhere.

I knew to expect this. Seventy per cent of all claims get denied the first time, and have to be appealed. So I’m appealing. I have an appointment with a lawyer (a reputable one. Not one who screamed at me from a commercial during The Price Is Right,) on Wednesday. But even as I was expecting the denial, I wasn’t really prepared for all the things it said about me and my disease in the letter. It was really infuriating. It said that my attacks are being controlled by prescribed medication. No they’re not! My attacks are being controlled by my own diligence in avoiding triggers, and when an attack happens, I have morphine in my pantry. I’ll let them know during the appeal hearing that I’m happy to stay on morphine all the time if they’d like me to, in order to “control” my attack symptoms, and we’ll see who’d like to hire me then!

Anyway, at least I’ve got the letter and can move on with the process.

Otherwise, things have been OK-ish. We hit a pretty stressful time in the lives of the SasserStroms a couple of weeks ago, and it really tested my resolve. I had a couple of days of not being able to stop crying, partly because of what was going on, partly because of hormones, and partly because I knew being upset could make me sick, which just made me more upset. I’ve had some abdominal pain as a result, and I’ve been even more tired than I was, but I’m really, really, really working hard to stay calm. The situation has been resolved for now, and I can breath a little easier, but I’ve learned to expect that with us, there’s always something major around the corner. So finding ways to remain clear and steady and being at peace with the way  things go down is an absolute must for me.

On a positive note, Eric started a new job, which is going well so far. The pay is the best part. We’d been so broke for so long, after losing four jobs between the two of us in the last three years, that to have a decent steady income now is foreign to us. I’m gonna start acting like Eric’s Grandma, who, raised during the depression, now hides her money around the house in vases and pillow cushions, and won’t spend a dime on anything, ever, even though she’s kind of loaded. She takes the jelly packets home in her purse if you take her to IHOP. She will have everyone’s leftovers boxed up at a restaurant, even if your leftovers are just the lettuce and parsley garnish on your plate. At the country club where Eric’s parents were members, she’d go into the bathroom and use all of the lotions, Qtips, mouthwashes, and hairsprays that were on the counter as a courtesy, just because they were there and she wanted to get her fair share of free things. There’s even stories of stashing airplane bottles of liquor in her purse during international flights, even though she doesn’t drink. I love her. And I will turn into her. Being poor for so long can do that to you. (And I’m not at all  exaggerating when I say poor.)

Anyway, that’s (hopefully) behind us now, and we can actually pay all of our bills every month, which is great.

I’m working pretty hard to plan Adelaide’s Jungle Safari Fourth Birthday Party at the moment. So far, I’ve made invitations. And ordered party favors online. I have big plans for this one, but I know me and plans, so I was smart and decided to have the party at the park, so that when none of my big plans for activities and decorations actually happen, there’s a playground to fall back on.

I can’t believe my little baby is a four-year-old. I can’t believe I’m about to do it all over again. Lots of deep breaths are in order.

Baby Adelaide.

Oh, and in two weeks I turn 30. It never seemed strange or scary to me, 30. I’m actually kind of excited. I think it’s sort of cool and grown-uppy sounding. Will my parents stop telling me what to do come midnight August 28? Maybe. Probably not.

And to leave you with: Some pictures of my Peace. This is how I handle the stress of our life. This is what refreshes me. What makes it all OK. As much as I have to complain about living where I do, this is what I will never complain about. Having the beach right next to me for most of my life has made the ocean like an appendage. I need it and feel weird when my toes go too long without being in sand. The salt water makes me feel healthy, and the sun warms my insides. (Though, I own a beach tent for the first time in my whole life.) Summer is my religion, and the beach my sanctuary. This year I will put some beach in a glass jar, so that when I can’t get warm in February and the darkness makes me sad and I’m tired and sick, I’ll remember that it’s just around the corner…




3 responses

17 08 2010
Sunshine@The Culinary Vampire

Oh girl, hang in there! We tried to get Tara on disability several years ago and we stopped just before the trial process. My mom, who now works for the Office of Disability, said that you have the best chances when you get to trial. She said 65-75% of all cases that go to trial get approved.

Good luck!

25 08 2010

Hey Sabrina. I have been going through hell trying to get my diagnosis. Long story short, my DNA results were negative for HCP and VP. I already had a negative test for the enzyme deficiency typically associated with AIP, but now my doctor thinks I could be in the 10% of AIP patients that don’t have that involvement. From what I can find, that seems to correlate with AIP Type 2. Since that’s what you have, can you tell me any more? I’ve read that this type can also have “pseudo” cutaneous symptoms. Any information you have would be great. Feel free to email me directly.

9 09 2010

So sorry I didn’t respond sooner. I took a break from all things porph.
There is something strange about type 2. It’s what I have. And I remember the hematologist explaining it in a way that suggested that if a negative test result came back on something, it pointed to type 2. Unfortunately, when he was going over all this with me, I was still pretty sick and drugged, and didn’t comprehend much. I have really really small cutaneous symptoms: skin reactions to detergents and perfumes, and occasional hives for no reason. And the sun bothers me more than it ever used to, although I’m not incapable of sitting in the sun altogether.
When I see my hematologist this month, I’ll see if I can get some clarification about what exactly points to type 2 AIP, and I’ll let you know what I find out.

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