Monday, April 23, 2012

Sneaky Sneaky

Alright, I can't remember if I mentioned it in the last couple of posts, but I was doing really well. So well, the doctors figured I could be let and only have to come in every other month instead of every month. But Wegener's is a tricksy sort of beast.

When no one is watching it, it has this nasty habit of jumping out of the shadows to bite your unsuspecting rump.

I kept telling myself that it was just allergies and yadda yadda blah blah blah, but it's not. It's a flair. I get to jump from 2.5 mg of Prednisone back up to 20 mg. DE-PRESS-ING.

It was funny too, I was talking to my rheumy and one of the symptoms I'd had was strange hives, I'd get actual welts that would burn and itch and then vanish. My rhuemy was like, "huh, that's not normally something you see with Wegener's, but Lupus... You're not allowed to have anything else though." The next day I had a mark on my forehead, it looked like someone had actually bitten my forehead. This red mark was there for a while but then went away too.

Don't worry, I'm not thinking I have lupus too. I think it's just a weird little vasculitis thing. Wegener's can go after the skin and all.  Of course, I can go around telling people I have lupus in my hand. Hand lupus!

Needless to say, I am now back on my monthly rheumy visit. It was good for one month off, I guess.

Thursday, April 5, 2012

More About Social Security

I'm not exactly sure if I should be posting about this, but I think it might help some people out there.

There are things that social security doesn't seem to understand about vasculitis. They don't seem to get that symptoms can flair up at any time, they don't seem to understand that vasculitis (this is all types included) have a mortality rate of up to 98% within two years, and they don't seem to understand that stress and illness increase the risk of symptoms reoccurring.

When a person is attempting to apply for social security in the US they have to list every medication that they take for their condition and why they take it. A while back my rheumatologist and I decided that, in order to deal with the mood changes and depression I had been having in reaction to my situation and the medications I am currently on, I would begin taking some anti-depressants.

This meant that when I applied for SS I had to put down that I am taking this new medication and that I am taking it for depression. I began taking this medication just before I got my first denial so I just added it to the list when I appealed.

It took them a couple of months to decide that if I was on an antidepressant why wasn't I seeing a psychologist for my depression? I must go see one. They paid for the appointment, and the psychologist explained to me that he was just going to do an interview and write a report for SS. What he says doesn't determine my approval or not, but that it helps SS weigh my options.

By this time, the medication was working, I already knew why I was depressed in the first place, and I was on my way to turning things around. I explained all this to the psychologist and we went on with the interview. I was a little concerned because I had lately been having some memory lapses that were bothering me, but the psychologist assured me that this was normal. Well, it's not normal for me. Something that he wouldn't know because he doesn't really know me.

This was my biggest problem with the interview. Sorry, but I don't think that a psychologist really has the ability to accurately determine the mental state of a person with just one interview. Maybe he thinks memory lapses in a 25 year old is normal, but it is not normal for me. I've never been the type to walk into a room and have no idea why, I've never had problems before with remembering words, or what I was talking about. Sometimes I've even forgotten who I was talking to while I was talking to a person. This isn't normal for me.

If SS is really concerned about deciding if a person does need a certain medication maybe they should try to get more than one appointment. My rheumatologist has seen me every month for over a year. She knows me. She knows what I want to do with my life, she knows how very not forthcoming I usually am about my problems, she has seen me in various moods. Bottom line, I trust her judgement on my mental state more so than a psychologist who only did a 15 minute interview.

Maybe it would be better for SS to do more than just take medical records. Maybe they should ask for statements from the physicians that work with the patient so that they can actually see why the decision to try for SS was made. They need to get a more complete image of the person.

Specifically when it comes to people with a disease such as vaculitis where symptoms come and go, medical professionals have no idea how to diagnose or treat, and there are no specialists that really deal with vasculitis. Many times patients with vasculitis are seen as malingering because they will put down on paper how they are feeling, but their bloodwork does not match up with what was said or when a face to face interview is done they don't seem "that sick".

I think what I'm really trying to get at in this post is that, we need to change the way that medicine and government treats patients with hard to diagnose diseases. The diseases that are considered "mysterious".

In my case I do not want to spend my life on SS, I have the drive to get back into work and goals that I want to achieve. Unfortunately, right now my doctors and I have decided that it is not the best idea for me to be back in the work force right now. Until I do go back, I do need some way to support myself. Medical bills have burned through the savings I made while I was working and at the end of the year I will be uninsured. With one visit to my rheumatologist costing me over $350 not including any tests they do I am not going to be able to afford any further health care.