Monday, February 11, 2008
in which i explain more about my illness
I really just need to get this off my chest. I think a lot of people didn’t understand why I was so upset about the hives and talked about it so much last year. Most people hear “hives” and think of itchy red bumps that appear when you use a wrong detergent or brush against a creepy tree, and then go away once you’ve removed the allergen. Sure, that’s one type of hive.
My type is not that type. I have chronic idiopathic urticaria. From April 2007 to now, I have had only two or three weeks (mid-December to mid-January) when I have not had any hives. Except for those weeks, every day from April to now I have had hives. Every. Day. And they’re not just itchy bumps. They’re large, swollen, painful, itchy wheals. I have had them on every part of my body (including in my ass crack and on the palms of my hands) except for the bottoms of my feet and my cooter. Here’s hoping I never get them there.
I am physically uncomfortable every day that I have hives. Many days, my hands are so swollen I can’t wear my wedding ring, and they’re so sensitive that I can’t do the dishes or crinkle up a piece of paper. My entire body is on fire and very itchy. I could spend my entire day scratching. This physical distress makes me very short tempered and cranky. I am on edge all the time. I cannot get any relief, even from the Benadryl gel that used to give me 10 or so minutes of relief. Chronic illness often leads to depression. Since I was already depressed, this just made my depression worse. And yes, this is an illness.
Right now I take Clarinex and Allegra (2 pills) daily. I thought that was a lot until I found a support group and saw that some people were taking five or six drugs a day at two or three or four times the “normal” dosage, and they still didn’t have complete relief. Do you know how expensive it is to get all these drugs, especially when your insurance won’t cover all of them? It is very expensive. It’s also probably very bad for your body. If I could, I would live a drug free life except for the occasional analgesic. Alas…
In addition to the hives, I also have idiopathic angioedema. It used to happen every few months, but it’s happened twice so far in the last week. My symptoms and presentation are changing, and that makes me very nervous. It’s not like I can point to a banana and know that I can’t eat it; yesterday I could eat a banana, but today it might kill me. The angioedema is completely random. If I can catch it in time, I now know that if I pop a Prednisone, the duration and extent of swelling won’t be so bad. But if I don’t catch it in time, or if it’s just a persistent outbreak, my lips turn out like this. And sometimes my eyes are involved too. Last night my cheek was involved. That never happened before. I’m seriously scared about what happens when it reaches my throat and I can’t breath. I carry and Epi-Pen, but…
When I’m totally broken out and swollen, I don’t like going out because people stare. In the summer, when the hives are at their worst and I’m wearing a tank top because it’s fucking hot, I’m embarrassed to even show myself because my arms are so covered in welts. People stare and they say ignorant things.
The point is, I am miserable and I can’t do anything about it. I’ve seen four doctors and gotten very little relief. I’m going to try going to another allergist, but I don’t hold out much hope. I believe at this point that it’s an autoimmune disorder, and even immunosuppresants can’t help the urticaria much. Sure, I could get on a twice-daily dosage of Prednisone, and that would help for a while. But Prednisone is a scary drug, and I’m not at all comfortable with the long term use side effects. Plus, after a while, I’d become immune to it anyway. My “condition” makes me not want to go outside. I don’t want to go to work or see friends or go shopping or go to the movies. I worry about being out and having an attack. I worry about making sure I have my drugs with me at all times. I can’t enjoy my life because I’m in pain and itchy all the fucking time.
It’s not just that I’m a whiny bitch—it’s that I have a real illness with real symptoms and no one knows how to cure it, and it fucking sucks.
Also, why the fuck are all the allergists/immunologists in the ‘burbs? We’re a huge hub of hospitals. We’re supposed to have better care than the ‘burbs. I need a doctor in the city, not the fucking ‘burbs (I cannot get to the suburbs.). The only ones I can find are part of the practice I went to before and hated. Or they’re pediatric allergists. Where is someone that can help me?!?
posted by sarah on 02/11/2008 at 03:21 PM
Sunday, February 10, 2008
bulldog
Sleeping Beef
Originally uploaded by cknlomein
krista and i have decided that when we get a dog (when we live somewhere bigger and with grass) we’re going to get a bulldog.
why?
because they’re pudgy and durfy looking and according to the dog show we watched, they like to chill on the couch.
which pretty much describes us to a “t”.
posted by sarah on 02/10/2008 at 09:52 PM
Friday, February 08, 2008
i am a geek
really quick: i signed up for mint today, and i’ve wasted WAY too much time adding accounts and playing with the shiny charts. i haven’t been able to add 2 of my credit card for some reason, but i’ll figure it out. i dunno, it’s just fun (and depressing) seeing exactly where my money’s going.
posted by sarah on 02/08/2008 at 04:03 PM
Wednesday, February 06, 2008
good think i didn't wear ripped jeans and a hoodie today
so, that professor friend of mine called me today to confirm i’d be there tonight. this took me by surprise, since i hadn’t heard back from him at all. i just assumed something came up. i figured i wouldn’t be going. turns out his emails were’t going thru because of continuing issues with his work email firewall.
long story short, i’ll be going tonight. even with the angioedema and the no makeup. but, at least i’m wearing normal clothes and not ratty “i feel crappy” clothes. not professional clothes, but still.
i’m not nervous about going, because i know my shit and i could talk for quite sometime about what i do and the industry i’m in. but, i am only 27. and that’s pretty young. and i will probably be younger than half the class. and that’s intimidating because people equate youth with ignorance. so...yeah.
plus i don’t have anything to bring with me to show off because i won’t be going home before heading out there since i have to head right from work back to 30th street and then catch the r5 (how i hates it) to the school and even then i won’t get there until about 7.30. it’s a big hassle, but i really want to do it, so i am. i am gonna make a handout, which is pretty lame, but at least it’ll be something.
wish me luck!
posted by sarah on 02/06/2008 at 02:45 PM
get your guesses in!
i preliminarily did my taxes last night. i fucked something up, so i have to redo them this weeked. but i have a good idea of how much i owe. have you gotten your guess in? you have until friday at 6pm to do so!
posted by sarah on 02/06/2008 at 11:18 AM
Tuesday, February 05, 2008
wherein i ask readers to use their institutional connections
there are several journal articles that i would like access to. however, i don’t want to pay for them. at all. i know many of you have access to lots of different things because of where you work or go to school. so, i was hoping that you could look and see if you could get me an e-copy of any of the following articles. even just cutting and pasting and emailing would be great. i really appreciate it!
- Greaves MW, Tan KT. Chronic Urticaria: Recent Advances. Clin Rev Allergy Immunol. 2007 Oct;33(1-2):134-143.
- Kulthanan K, Jiamton S, Thumpimukvatana N, Pinkaew S. Chronic idiopathic urticaria: prevalence and clinical course. J Dermatol. 2007 May;34(5):294-301.
- Guldbakke KK, Khachemoune A. Etiology, classification, and treatment of urticaria. Cutis. 2007 Jan;79(1):41-9.
- Marsland AM. Autoimmunity and complement in the pathogenesis of chronic urticaria. Curr Allergy Asthma Rep. 2006 Jul;6(4):265-9.
- Sicherer SH, Leung DY. Advances in allergic skin disease, anaphylaxis, and hypersensitivity reactions to foods, drugs, and insects. J Allergy Clin Immunol. 2006 Jul;118(1):170-7.
- Schocket AL. Chronic urticaria: pathophysiology and etiology, or the what and why. Allergy Asthma Proc. 2006 Mar-Apr;27(2):90-5.
- Vonakis BM, Saini SS. Basophils and mast cells in chronic idiopathic urticaria. Curr Allergy Asthma Rep. 2005 Jul;5(4):270-6.
- Weldon D. When your patients are itching to see you: not all hives are urticaria. Allergy Asthma Proc. 2005 Jan-Feb;26(1):1-7.
- Caproni M, Volpi W, Giomi B, Cardinali C, Antiga E, Melani L, Dagata A, Fabbri P. Chronic idiopathic and chronic autoimmune urticaria: clinical and immunopathological features of 68 subjects. Acta Derm Venereol. 2004;84(4):288-90.
posted by sarah on 02/05/2008 at 03:06 PM
Monday, February 04, 2008
Peter Jennings: A Reporter's Life
I was saddened by the death of Peter Jennings. I had watched him for many years and I felt he was an honest reporter. If I ever became famous, I wanted him (and no one else) to interview me. When he died, I looked for a biography, but there wasn’t one. I was surprised by that, but then something shiny caught my attention and I moved on to other things. Then last December when I was in Barnes and Noble looking for a birthday present for Krista, I saw Peter Jennings: A Reporter’s Life. I bought it without a second thought.
It’s not a “traditional” biography. Instead, it’s “lightly edited” transcripts of the interviews that were done for the special about his life that ABC aired very soon after his death. It is people’s verbatim remembrances of their experiences with Peter Jennings and their thoughts about him as a man and a reporter. I thought it was a very interesting biography, and I learned quite a few things about Jennings and about world history. And the book, though it was about Jennings, was also about being a reporter and how much that has changed since the 50s and 60s.
The one thing that I did not like is that, since it was a bunch of people sharing memories and many of those memories were about the same thing, sometimes I felt hammered over the head with a point. Six people in a row would say “blah” and by the third person you got it, you didn’t need to keep hearing it. So I think that is perhaps a flaw of the editing of the book. You didn’t read one person’s interview from start to finish and then read the next person’s; instead the book was divided into chapters about a certain aspect of Peter Jennings’ life and career, and the relevant parts of each person’s interview was included in the chapter. But this hammering over the head didn’t happen much, and didn’t detract from my overall enjoyment of the book.
I think Peter Jennings was an excellent reporter. I learned that the network wasn’t influencing the stories that he did. Instead, he said he wanted to do a story on Bosnia or tobacco and he did it. That’s what we as viewers saw--the things that he felt it was important for us to know about.
He was very concerned about international reporting. He felt that we couldn’t function within the world if we didn’t know what was going on in it. He fought for years to be able to include more international stories in the half-hour broadcast. And he usually won. If he was doing a story on Sarajevo, he went to Sarajevo, learned about the issues and then told viewers about what was going on there and why. He didn’t just read the teleprompter or tell us what other people had told him. He went to a story and immersed himself in it until he knew all sides of the issue and then he reported back. He cared about being fair and being truthful, not about ratings.
And we certainly don’t have that kind of journalist anymore; reading this book really made me realize that. We have hour long shows about how to catch a predator or about some other stupid thing, and it’s more about production value and scandal than it is about educating the public about an issue. Jennings did tons of hour long documentaries that were all about educating us on the issues he felt we should know about (tobacco, AIDS, violence in America, healthcare, etc.). He wasn’t a fluff reporter and he didn’t kowtow to the politicos. That is something that I very much miss about him.
Two interesting things I learned about him: one, he was the only non-sports reporter at the Olympic games in Munich. His bosses sent him over there because he was in the area and they wanted him to cover the games from a non-sports angle. And of course while he was there the hostage situation happened. So he got a huge exclusive on that story, and since he had such a background in Middle East issues (he’d spent many years there as a foreign correspondent) he was able to offer a lot of insight into the situation, explaining who he thought was behind it (he was right) and why that particular group was doing this. Two, when Saddam Hussein went on trial after his capture a few years back, they were not letting any non-Iraqi press/media in the courtroom. None. But somehow Peter Jennings got in the courtroom and did a report via his cellphone. It was quite the news coup.
I enjoyed his newscasts very much, and I’m sad that he’s no longer with us. I hope that we somehow get back to the type of news and journalism that he valued and that he practiced. We need it.
posted by sarah on 02/04/2008 at 12:21 AM