My father's best friend killed himself last night. It was very unexpected, but somehow not very surprising. He had pretty progressive multiple sclerosis and... he was just in really bad shape. In his note he said that he had the right to decide when he died. My dad was probably the last person to see him - he went over last night to watch the football game with him.
The thing is, I completely understand why he did it. With a such a degenerative, incurable disease, there's not much else you can do. When you can no longer control your body, what else can you control? Given a choice of slowly and painfully wasting away to nothing or dying quickly on your own terms, what would you choose? At what point does suicide become the best cure?
This dilemma is one that I have given a good deal of thought. There's a good chance with my Wegener's Granulomatosis I could end up in a similar situation. It's not nearly as bad as MS - there are pretty effective ways to control it and I responded well to the treatments. It's also possible that I will never have a relapse and I will go on living a healthy, normal life. But what if I do have a relapse? What if next time it's much worse and I don't respond to treatment? If my lungs collapse and my kidneys shut down, if WG slowly eats away at my body... at some point quality of life is so low that it's easier on everyone to simply end things.
I'm not saying that I want to kill myself, not by a long shot. But if I've become a burden to those who love me (and I'm not saying my Dad's friend was, but... he was. They were glad to bear that burden, but still), if I can no longer do anything that I like to do, if I am slowly wasting away and the only thing I can still control about my life is how it ends....
I guess my point is that I can really understand why he did it. That actually scares me a little.
My mom is making paella for his widow (oh, wow, she's a Widow... somehow that's harder to wrap my mind around than anything else I've written today). Why does our society meet tragedy with food?
Showing posts with label W to the G. Show all posts
Showing posts with label W to the G. Show all posts
Sunday, September 27, 2009
Tuesday, March 10, 2009
Important Anniversaries
I am so incredibly, completely and unflappably happy! Today officially marks 5 years of full and complete remission for me. That's right, the Wegerner's Granulomatosis has been leaving me alone, without being pushed back with medicine, for 5 full years.
Honestly, it doesn't really change anything. I still have to be careful and see the doctor occasionally etc. 5 years doesn't mean that it wont ever come back. But I feel like it is a very important landmark.
I'm so excited, I could burst! I can't stop smiling, but I also kind of want to cry. Every molecule of air I breathe is like a sundae. Life is so incredibly amazing! If there's one thing I've learned from all this it is that we are so lucky for every single moment of every day.
For those readers who don't know the whole story, I have blogged about it a few times before and to catch up it's just a matter of reading through all those. I recommend starting at the bottom. If you don't have time to read everything, a few years ago I posted the whole story in three installments: One, Two, Three. It's not exactly a small amount of reading, but it will go faster than slogging though everything with the WG tag.
It's really hard to fully express how amazing and important this five year thing is. Some of you, dear readers, have been there with me from the beginning, so I'm guessing you understand. It's almost impossible to tell other people about it and have them get it though. Even so, I want to go up to every person I see and say to them "Guess what! I've been healthy for five years, isn't that great!?" I'm not sure such behavior will go over well.
Of course I'm celebrating. I going out to dinner tonight with my family. Not really doing anything big today, actually. I would throw a big party, but there's snow on the ground and it's had to get all the people I want to include inside one place. This summer though I plan to throw a major celebration. I feel so blessed to have so many people support me the last few years and I want to share with them the wonderful news. So later this year, I will have a big Life party.
Do me a favor, wherever you are: Enjoy the crap out of today!
Honestly, it doesn't really change anything. I still have to be careful and see the doctor occasionally etc. 5 years doesn't mean that it wont ever come back. But I feel like it is a very important landmark.
I'm so excited, I could burst! I can't stop smiling, but I also kind of want to cry. Every molecule of air I breathe is like a sundae. Life is so incredibly amazing! If there's one thing I've learned from all this it is that we are so lucky for every single moment of every day.
For those readers who don't know the whole story, I have blogged about it a few times before and to catch up it's just a matter of reading through all those. I recommend starting at the bottom. If you don't have time to read everything, a few years ago I posted the whole story in three installments: One, Two, Three. It's not exactly a small amount of reading, but it will go faster than slogging though everything with the WG tag.
It's really hard to fully express how amazing and important this five year thing is. Some of you, dear readers, have been there with me from the beginning, so I'm guessing you understand. It's almost impossible to tell other people about it and have them get it though. Even so, I want to go up to every person I see and say to them "Guess what! I've been healthy for five years, isn't that great!?" I'm not sure such behavior will go over well.
Of course I'm celebrating. I going out to dinner tonight with my family. Not really doing anything big today, actually. I would throw a big party, but there's snow on the ground and it's had to get all the people I want to include inside one place. This summer though I plan to throw a major celebration. I feel so blessed to have so many people support me the last few years and I want to share with them the wonderful news. So later this year, I will have a big Life party.
Do me a favor, wherever you are: Enjoy the crap out of today!
Sunday, November 02, 2008
Unhappy Happenings
I just got some bad news from a friend of mine. I haven't actually met the guy, but he's one of the most important people in my life. I think of him as my Wegener's buddy. He contacted me on Myspace a few years ago. His story with the disease is not entirely dissimilar to mine, though he's had a little more trouble with it than I have. The important thing is that we both kind of have the same attitude about it. It was an absolute godsend for me to find someone around my same age who knew what I was (am) going through.
One of the worst things about getting diagnosed (for both of us, really) was the mental aspect of the whole thing. Neither of us was particularly comfortable asking for help from our friends and family, but it'shard impossible to deal with the thing alone. It's not that we didn't feel like our friends and family would want to help, it's just.... Well, my family was going through the suckiness right along with me so it was hard to burden them with my own issues. And my friends couldn't (most of them... all of them?... still can't) really truly understand what I was going through.
It was awesome to find someone who really Got IT. I don't actually even talk to him all that often, but it's nice to know that someone is out there who understands exactly what it's all like. I am so grateful that he's out there.
I e-mailed him earlier this month with my good news. He wrote back congratulating me and then he told me that he has relapsed.
That absolutely breaks my heart. He'd been in remission for about for, I think, 6 or 7 years. Now he's back on all the awful meds and....
I'm not sure where I wanted to go with this. I'm just really bummed to hear that he's not doing well. If you do the prayer thing, say one for him. Otherwise, cross your fingers, wish on a star, do whatever you do to send him luck. And take a moment to appreciate how incredibly lucky you are to have good health.
One of the worst things about getting diagnosed (for both of us, really) was the mental aspect of the whole thing. Neither of us was particularly comfortable asking for help from our friends and family, but it's
It was awesome to find someone who really Got IT. I don't actually even talk to him all that often, but it's nice to know that someone is out there who understands exactly what it's all like. I am so grateful that he's out there.
I e-mailed him earlier this month with my good news. He wrote back congratulating me and then he told me that he has relapsed.
That absolutely breaks my heart. He'd been in remission for about for, I think, 6 or 7 years. Now he's back on all the awful meds and....
I'm not sure where I wanted to go with this. I'm just really bummed to hear that he's not doing well. If you do the prayer thing, say one for him. Otherwise, cross your fingers, wish on a star, do whatever you do to send him luck. And take a moment to appreciate how incredibly lucky you are to have good health.
Wednesday, September 24, 2008
Think Happy Thoughts
This week is a very special week. That's right, kids, it's Vasculitis Awareness Week. As most of my long time readers (what are there, 2 of you?) know, I have vasculitis in the form of Wegener's Granulomatosis.
I already told my story here last year, so I wont go into it again. I gave y'all links if you don't know about it. I do have awesome news though! Last week I went to the doctor for my bi-annual visit, just to make sure nothing scary is coming back. Everything checked out, no surprise there. The good part is that Doc told me that he only needs to see me once a year now.
Ok, that doesn't sound like such a big deal, does it? But that's really just about as close to a clean bill of health that I can get. I'm pretty damn happy to be seeing my doctor 50% less frequently. Not that he isn't nice, but, you know.
Other good news is that I am only about 6 months away from being in full remission for 5 years! Super excited about this! Thus the exclamation points! I mentioned this to my doctor and he said, hesitantly, that it is possible that I won't ever have a relapse. He didn't have any statistics to quote me, but there are some cases with WG that people go into remission and stay there for the rest of their life. It's a slim chance, but it's a chance just the same. Let's hope that I'm one such case.
I already told my story here last year, so I wont go into it again. I gave y'all links if you don't know about it. I do have awesome news though! Last week I went to the doctor for my bi-annual visit, just to make sure nothing scary is coming back. Everything checked out, no surprise there. The good part is that Doc told me that he only needs to see me once a year now.
Ok, that doesn't sound like such a big deal, does it? But that's really just about as close to a clean bill of health that I can get. I'm pretty damn happy to be seeing my doctor 50% less frequently. Not that he isn't nice, but, you know.
Other good news is that I am only about 6 months away from being in full remission for 5 years! Super excited about this! Thus the exclamation points! I mentioned this to my doctor and he said, hesitantly, that it is possible that I won't ever have a relapse. He didn't have any statistics to quote me, but there are some cases with WG that people go into remission and stay there for the rest of their life. It's a slim chance, but it's a chance just the same. Let's hope that I'm one such case.
Thursday, July 17, 2008
Come Up With Your Own Clever Title
Since Aaron gets all Whiney McWhiney-Pants when I don't update, and who am I to ignore my adoring public, I decided to jot down a few random thoughts today at work. I didn't blog in real time because... well technically I'm not allowed to while I'm getting paid. And that kind of makes sense, really, if you think about it. I also have to make it clear that the thoughts herein expressed are in no way representative of my employer etc. But you all know that.
The point is I now have two little pieces of paper with a collection of random things that came floating through my head. I am going to type them up now so that you can get a feel for what it's like being inside my head when I'm at work and it's really slow and I'm on desk all by myself. I present to you (in abulletted Warhol Soup Canned list) the random thoughts from work today:
A lady was in here with puzzle pieces tattooed all over her head. Her head is shaved and the whole effect is really neat. I wanted to say something complimentary, but what does one say to someone like that? "Dude, sweet tats" is so cliche... not to mention stupid. The best I came up with was, "I like your head" but it amused me so much that I just sat silently laughing at myself until she left and it was too late. Which is fine. I didn't really need to talk to her anyway.
Skirts are fun. They are nice and cool in the summer. Much nicer than pants. Pants suck. If I swivel in my chair I get a little bit of a Marilyn Monroe effect from the fan under the desk. It's sort of fun. And potentially embarrassing. Skirts are fun, but risky.
According to the stupid book I'm reading (How To Make Someone Love You Forever in 90 Minutes or Less) the best and quickest way to connect with other people is simply by making eye contact and smiling. That was in the chapter that doesn't really have anything to do with making someone fall in love with you; it was about meeting new people. Anyway, people don't make eye contact much these days let alone smile. It's so simple, and no one does it. Just think about all the people you miss out on when you're looking down all the time. All the interesting people you could meet, or at least see. It's the simplest of connections, but I think it could be really powerful. I resolve to make eye contact with and smile at as many people as possible today. And tomorrow too. All week. Hell, It'll just be my policy to look up and smile and look people in the eye. Who knows, maybe that will lead to me making someone love me in 90 minutes or less after all.
There's a girl here with a bandage on her nose. She can't be more than 15 or 16. Nose job? Sad, if it is. She's way too young to be getting a nose job. That said, if I ever get Wegener's again (knock on wood - to not get it) I totally get a new nose out of it! Seriously, the chances of my nose collapsing if I have a relapse are pretty high. So I can get a new one. But who's nose should I pick???? Yours! Mwa-ha-ha-ha-ha. Just kidding. Your nose would look kinda funny on my face. I would probably just take and old picture of me and say "I want my old nose back please." It would be a picture from before I got sick the first time though. My nose is a bit wonky since then. You wont notice it unless you spend a lot of time looking at my nose, which I do, apparently.
I love it when guys try to show off and then fail. I just got winked at. Then the kid ran into a wall. Classic! And you thought that only happened in the movies! Yes, boys, I take much pleasure in your pain!
na-na-nana-nana-nana na-na-nana-nana-nana Batman! I'm totally going to see that tomorrow night. At midnight. Then I waking up at 6 to take the parents to the airport the next morning. And I have a paper due Friday too. Crap. And I'm working all day tomorrow. Hmmm I have some time between 6 and 8... or nine. Good thing it's a short paper.
The Batman theme song... the oldschool one from the TV show... is a traditional blues chord progression. Aren't you glad you know that now? So if you ever are with me and a jazz concert and you notice I am singing batman under my breath, it's only because I'm trying to determine whether they are playing blues or not. That's pretty much the only thing I remember from the Survey of Jazz (or whatever it was) class I took a year or so back. That and Johnny Hodges is an amazing sax player.
The point is I now have two little pieces of paper with a collection of random things that came floating through my head. I am going to type them up now so that you can get a feel for what it's like being inside my head when I'm at work and it's really slow and I'm on desk all by myself. I present to you (in a
A lady was in here with puzzle pieces tattooed all over her head. Her head is shaved and the whole effect is really neat. I wanted to say something complimentary, but what does one say to someone like that? "Dude, sweet tats" is so cliche... not to mention stupid. The best I came up with was, "I like your head" but it amused me so much that I just sat silently laughing at myself until she left and it was too late. Which is fine. I didn't really need to talk to her anyway.Skirts are fun. They are nice and cool in the summer. Much nicer than pants. Pants suck. If I swivel in my chair I get a little bit of a Marilyn Monroe effect from the fan under the desk. It's sort of fun. And potentially embarrassing. Skirts are fun, but risky.
According to the stupid book I'm reading (How To Make Someone Love You Forever in 90 Minutes or Less) the best and quickest way to connect with other people is simply by making eye contact and smiling. That was in the chapter that doesn't really have anything to do with making someone fall in love with you; it was about meeting new people. Anyway, people don't make eye contact much these days let alone smile. It's so simple, and no one does it. Just think about all the people you miss out on when you're looking down all the time. All the interesting people you could meet, or at least see. It's the simplest of connections, but I think it could be really powerful. I resolve to make eye contact with and smile at as many people as possible today. And tomorrow too. All week. Hell, It'll just be my policy to look up and smile and look people in the eye. Who knows, maybe that will lead to me making someone love me in 90 minutes or less after all.
There's a girl here with a bandage on her nose. She can't be more than 15 or 16. Nose job? Sad, if it is. She's way too young to be getting a nose job. That said, if I ever get Wegener's again (knock on wood - to not get it) I totally get a new nose out of it! Seriously, the chances of my nose collapsing if I have a relapse are pretty high. So I can get a new one. But who's nose should I pick???? Yours! Mwa-ha-ha-ha-ha. Just kidding. Your nose would look kinda funny on my face. I would probably just take and old picture of me and say "I want my old nose back please." It would be a picture from before I got sick the first time though. My nose is a bit wonky since then. You wont notice it unless you spend a lot of time looking at my nose, which I do, apparently.
I love it when guys try to show off and then fail. I just got winked at. Then the kid ran into a wall. Classic! And you thought that only happened in the movies! Yes, boys, I take much pleasure in your pain!
na-na-nana-nana-nana na-na-nana-nana-nana Batman! I'm totally going to see that tomorrow night. At midnight. Then I waking up at 6 to take the parents to the airport the next morning. And I have a paper due Friday too. Crap. And I'm working all day tomorrow. Hmmm I have some time between 6 and 8... or nine. Good thing it's a short paper.
The Batman theme song... the oldschool one from the TV show... is a traditional blues chord progression. Aren't you glad you know that now? So if you ever are with me and a jazz concert and you notice I am singing batman under my breath, it's only because I'm trying to determine whether they are playing blues or not. That's pretty much the only thing I remember from the Survey of Jazz (or whatever it was) class I took a year or so back. That and Johnny Hodges is an amazing sax player. Wednesday, March 05, 2008
What's In A Name
Interesting news on the Wegener's front. Not that any of you really follow the subject, but recently information has come out that Dr. Wegener was a Nazi. That sucks. You can read the NY times article here. Or you can just ask google about Wegener and Nazi.
Anyway, because the Nazis were mass murdering fuck heads, there's a movement to change the name of WG. I'm kind of indifferent on that front. It's still going to suck no matter what you call it. I don't feel any worse knowing that the dude it's named after was a bad guy. It's not going to make me feel any better if I have to start calling it something else. In fact, it's not going to affect me much at all.
Anyway, it looks like I may soon get to say I have "ANCA-associated granulomatous vasculitis." Because people don't scratch their heads and say "huh?" when I tell them I have Wegener's granulomatosis; a more complicated name is definitely what this disease needs. And dammit, I'll have to change the tags on all my WG related posts. Stupid Nazis.
Anyway, because the Nazis were mass murdering fuck heads, there's a movement to change the name of WG. I'm kind of indifferent on that front. It's still going to suck no matter what you call it. I don't feel any worse knowing that the dude it's named after was a bad guy. It's not going to make me feel any better if I have to start calling it something else. In fact, it's not going to affect me much at all.
Anyway, it looks like I may soon get to say I have "ANCA-associated granulomatous vasculitis." Because people don't scratch their heads and say "huh?" when I tell them I have Wegener's granulomatosis; a more complicated name is definitely what this disease needs. And dammit, I'll have to change the tags on all my WG related posts. Stupid Nazis.
Monday, March 03, 2008
Marching In
Hooray! It's March! That means warmer weather (right?). And that means time to get out on my bike again.
I actually spent a few hours on Saturday fixing up my bikes. Bike1 got new tires, some truing (I actually am just learning how to do that) and a spiffy new rack. It was actually in decent shape to start out, except for the tires. Frankenbike (the fixed gear) needed a little more work. I got to mess with the chain and fiddle with the seat plus the usual fiddling with things and cleaning, you know, like you do. Both are ready to be ridden now though, I am pretty psyched about it.
Saturday afternoon it snowed. Aaron, I know you read this and will probably give me shit for not being an all weather biker. And, it's true, I had great plans to ride through the winter. But I am kind of a wuss and like it to be sunny and fine when I'm on my bike, or at least not freezing and snowy. Plus, it's been kinda windy. Wind= scowling frowny face. Hopefully things will turn (and stay) happy and warm soon.
In other news, I'm still searching for new employment. I haven't heard from the place I interviewed at last week. I had an interview at the library today, but there's a sub who's applying for that job and will probably get it. She's already trained and everything, so it makes sense. The hospital my dad works at is desperate for a PR assistant. I'm sending them my resume tomorrow. That could be a lot of fun because I would get to do a lot of traveling. I might have an edge there too because they all know me, and I'm a former patient.
In other other news (but actually kind of related to what I started with, thus bringing this post full circle. Aren't circles awesome?), my buddy Aaron (he's popular in my blog today) wants to arrange a cross-country bike ride to raise funds and awareness for Wegener's. How groovy is that? Of course, he's not allowed to do this without me. We're looking at next summer (2009). There is a lot to do, so anyone interested in helping out will be loved forever and ever.
I actually spent a few hours on Saturday fixing up my bikes. Bike1 got new tires, some truing (I actually am just learning how to do that) and a spiffy new rack. It was actually in decent shape to start out, except for the tires. Frankenbike (the fixed gear) needed a little more work. I got to mess with the chain and fiddle with the seat plus the usual fiddling with things and cleaning, you know, like you do. Both are ready to be ridden now though, I am pretty psyched about it.
Saturday afternoon it snowed. Aaron, I know you read this and will probably give me shit for not being an all weather biker. And, it's true, I had great plans to ride through the winter. But I am kind of a wuss and like it to be sunny and fine when I'm on my bike, or at least not freezing and snowy. Plus, it's been kinda windy. Wind= scowling frowny face. Hopefully things will turn (and stay) happy and warm soon.
In other news, I'm still searching for new employment. I haven't heard from the place I interviewed at last week. I had an interview at the library today, but there's a sub who's applying for that job and will probably get it. She's already trained and everything, so it makes sense. The hospital my dad works at is desperate for a PR assistant. I'm sending them my resume tomorrow. That could be a lot of fun because I would get to do a lot of traveling. I might have an edge there too because they all know me, and I'm a former patient.
In other other news (but actually kind of related to what I started with, thus bringing this post full circle. Aren't circles awesome?), my buddy Aaron (he's popular in my blog today) wants to arrange a cross-country bike ride to raise funds and awareness for Wegener's. How groovy is that? Of course, he's not allowed to do this without me. We're looking at next summer (2009). There is a lot to do, so anyone interested in helping out will be loved forever and ever.
Monday, February 18, 2008
Unfortunate Events
I almost spent Sunday afternoon at the emergency room. My nose was bleeding for at least 45 minutes and wouldn't stop. I was actually about half way to the hospital when it stopped.
A nosebleed like that is never a wonderful thing. But, of course, there is a whole other level of scary for me. After all, killer bleeds were the most obvious symptom I had when I was diagnosed with Wegener's. So that's something I have to consider now. I talked to my doctor when I was on my way to the ER and he's not that worried. But I still have to go in for the barrage of tests.
I'm sure there's nothing to worry about. I haven't had any other symptoms... I think. I have to be optimistic about it until I know for sure. If I really freak out about it, I'm bound to drive myself nuts. I could easily go into hypochondriac mode and... well, it's not a fun place to be.
Anyway, cross your fingers for me for a little while. Hopefully nothing will come of this.
A nosebleed like that is never a wonderful thing. But, of course, there is a whole other level of scary for me. After all, killer bleeds were the most obvious symptom I had when I was diagnosed with Wegener's. So that's something I have to consider now. I talked to my doctor when I was on my way to the ER and he's not that worried. But I still have to go in for the barrage of tests.
I'm sure there's nothing to worry about. I haven't had any other symptoms... I think. I have to be optimistic about it until I know for sure. If I really freak out about it, I'm bound to drive myself nuts. I could easily go into hypochondriac mode and... well, it's not a fun place to be.
Anyway, cross your fingers for me for a little while. Hopefully nothing will come of this.
Thursday, September 27, 2007
The Saga Continues
When we left our heroine, she was in the hospital starting treatment for WG. And now, boys and girls, the story continues.
I was in the hospital for a total of ten days. Friends visited bearing gifts (the best thing I got was a bunch of oranges. They were do delicious, especially when all I had to eat was hospital food), I was asigned a social worker who I was snotty and mean towards, I watched a lot of movies, and I slept a lot. On the ninth day, I was well enough to go home but I was anemic and needed a blood transfusion. Of course, as soon as they told me this, someone came in to take more blood- I thought it was funny.
A blood transfusion is one of the most uncomfortable experiences I've ever had. It looked like black-cherry soda going into my arm and it was painful. The blood was cold so I could actually feel it inside my arm until it warmed up to body tempurature. Internal cold feels like a sharp ache. It's not fun.
Finally I was released. I wasn't allowed to go back to school for another week because my immune system was not up to snuff. I did go in to talk to my teachers one day around the time classes let out. I'll never forget the look on my friends' face when they saw me walking down the hall. It was possibly one of the best moments of my life.
The first week out of the hospital I was still sleeping most of the time. Some days I would only be able to stay awake for about two hours. The second week it was back to school. I had to drop most of my classes (thankfully I was a senior and had finished the classes I needed for graduation) because I couldn't handle being at school all day. Things settled into a routine of classes, pills, doctor apointments, IV treatments and sleep. At least my nose stopped bleeding. I suffered huge weight gain and "moon face" at the hands of prednisone (I hate hate hate that drug!).
Life went on. Eventually the doctor appointments were farther apart and the doses of medication got smaller. The physical affects of the disease dissipated, but the mental and emotional trauma continued. I was 17 fror fuckssake, and this completely disrupted my life. Not only did I nearly die at the age when we're supposed to feel like we're infalible and going to live forever, but my entire life plan was thrown off. I had never considered not going away to college right after high school, but it was suddenly not an option. I watched my life as it should be go on without me while I was stuck at home being sick.
I had to completely re-define myself. I could no longer be the energetic, outgoing, do-everything girl I always was; I would literally crash for days if I tried to do half of what I normally would. I had to learn to pay close attention to how tired I was and what was going on with my body. At 17, I had to suddenly think like a 50 year old (I think that's more or less exactly how my doctor put it).
It has been 5 years since I was diagnosed. It took two years to reach remission physically. Mentally, I only recently really came to terms with everything. I finally feel like I can handle what this means for my life. I have found the balance between hyper-vigilance and negligence. As traumatic and difficult as everything has been, in some ways I'm glad it all happened. The whole ordeal has really shaped who I am today. Of course I wouldn't be unhappy if I never had to worry about it ever again, but my life would be much less rich without it. And it's a comfort to know that I've been through all this shit, and I survived. That kind of strength is bound to come in handy sometime in life, right?
I was in the hospital for a total of ten days. Friends visited bearing gifts (the best thing I got was a bunch of oranges. They were do delicious, especially when all I had to eat was hospital food), I was asigned a social worker who I was snotty and mean towards, I watched a lot of movies, and I slept a lot. On the ninth day, I was well enough to go home but I was anemic and needed a blood transfusion. Of course, as soon as they told me this, someone came in to take more blood- I thought it was funny.
A blood transfusion is one of the most uncomfortable experiences I've ever had. It looked like black-cherry soda going into my arm and it was painful. The blood was cold so I could actually feel it inside my arm until it warmed up to body tempurature. Internal cold feels like a sharp ache. It's not fun.
Finally I was released. I wasn't allowed to go back to school for another week because my immune system was not up to snuff. I did go in to talk to my teachers one day around the time classes let out. I'll never forget the look on my friends' face when they saw me walking down the hall. It was possibly one of the best moments of my life.
The first week out of the hospital I was still sleeping most of the time. Some days I would only be able to stay awake for about two hours. The second week it was back to school. I had to drop most of my classes (thankfully I was a senior and had finished the classes I needed for graduation) because I couldn't handle being at school all day. Things settled into a routine of classes, pills, doctor apointments, IV treatments and sleep. At least my nose stopped bleeding. I suffered huge weight gain and "moon face" at the hands of prednisone (I hate hate hate that drug!).
Life went on. Eventually the doctor appointments were farther apart and the doses of medication got smaller. The physical affects of the disease dissipated, but the mental and emotional trauma continued. I was 17 fror fuckssake, and this completely disrupted my life. Not only did I nearly die at the age when we're supposed to feel like we're infalible and going to live forever, but my entire life plan was thrown off. I had never considered not going away to college right after high school, but it was suddenly not an option. I watched my life as it should be go on without me while I was stuck at home being sick.
I had to completely re-define myself. I could no longer be the energetic, outgoing, do-everything girl I always was; I would literally crash for days if I tried to do half of what I normally would. I had to learn to pay close attention to how tired I was and what was going on with my body. At 17, I had to suddenly think like a 50 year old (I think that's more or less exactly how my doctor put it).
It has been 5 years since I was diagnosed. It took two years to reach remission physically. Mentally, I only recently really came to terms with everything. I finally feel like I can handle what this means for my life. I have found the balance between hyper-vigilance and negligence. As traumatic and difficult as everything has been, in some ways I'm glad it all happened. The whole ordeal has really shaped who I am today. Of course I wouldn't be unhappy if I never had to worry about it ever again, but my life would be much less rich without it. And it's a comfort to know that I've been through all this shit, and I survived. That kind of strength is bound to come in handy sometime in life, right?
Wednesday, September 26, 2007
My Story
As promised, here is my personal tale of the Wegener's Granulomatosis beast! Some of it may be stuff I've already talked about in previous posts, but you'll get over it.
Once upon a time, or more precisely, sometime probably in November of 2001, I had a cold. It was a typical coughy sneezey uckiness that colds usually are, but it lingered a bit longer than it should have. After a while, I went to my doctor and he gave me anti-biotics. Funny thing was, the cold didn't improve. In fact, in got worse. I was tired and woozy all the time with a persistent cough. And I was having nosebleeds just about every day.
Nosebleeds are not a new thing for me- I've gotten them my whole life, especially in winter when the air starts to get a little bit drier and colder- so these didn't cause much concern at first. They started lasting longer and longer though and occurring two or three times a day. I was a little worried (and frustrated, 'cause you really can't do anything while your nose is bleeding), but when I mentioned it to my parents, they dismissed it. I had seen doctors about nosebleeds before, and they have never been very concerned or helpful.
Since my cold wasn't getting any better, I went back to my doctor who gave me another antibiotic. When he looked up my nose, like they do, he started a bleeder. After I bled in his office for about 15 minutes with no sign of it letting up, he sent me across the hall to the Ear Nose and Throat (ENT) guys. They managed to get the bleeding to mostly stop and then cauterized some bits of my nose. On my way out the door, it started bleeding again. So I went back in the chair and the ENTs cauterized some more. Again, as we were leaving, it started bleeding again, but there wasn't much tissue left to cauterize so we just left.
The end of December and the beginning of January are kind of a blur for me. I was still coughing all the time. I couldn't get a full nights sleep because I would wake up at 3 or 4 in the morning with a bloody nose that would last an hour or more. On New Year's Eve, I had plans to go to a party, but around 9 I fell asleep on the couch and slept there until 1:30. I slept through the big moment! I hadn't done that since I was 6.
When school started after winter break, I had a hard time getting through the days. One day, my nose started bleeding in the middle of my first period math class. I spent the next hour and a half bleeding in the bathroom. I just barely made it to my next class before it ended and I went home after that. I was light-headed from loosing all that blood, and I was tired (the normal state for me those days).
The nosebleeds started coming with pain. My nose hurt all the time, so I took ibuprofen for that. Not such a good idea in retrospect, as ibuprofen is a blood thinner and I was, you know, bleeding a a lot. It was a good day if I only bled for half and hour.
The week I went to the hospital, I went to school on Monday and came home before first period. I slept all day and went back for play practice. I had a fairly decent role in Macbeth and I didn't want to lose it. The next day I slept all day and just made it to rehearsal; the director ran through my scene really quickly and then sent me home. I didn't make it at all on Wednesday.
Wednesday night I had another nose bleed that lasted 2 hours. I was in tears from the pain and the frustration and the lack of sleep. My parents called my doctor (at 1 am) and he told us to go to the emergency room at Primary Children's Hospital in the morning. So on the morning of January 10, we did. At the ER, they ran some tests and took a chest x-ray. There were spots on my lungs so they said it might be pneumonia, but my other symptoms didn't make sense with that diagnosis. They decided to check me in and run some more tests. Once in my room, I called the drama teacher and told him I was in the hospital and wouldn't be at rehearsal. I also called my friend Cory, who I was supposed to go to Jr Prom with that Saturday and told him I couldn't go.
The next few days I barely remember anything. I slept most of the time. I was on morphine for the pain in my nose. Twice a day someone would come it and take blood for more tests. I must have seen every doctor in the area, but I was so out of it, I had no idea who they were or what they were doing. Finally Dr. Bohnsack figured it out. All the signs pointed to Wegener's, but he recommended doing a biopsy of some of the tissue in my nose just to be sure. So into surgery went I.
After the biopsy, my nose was packed with gauze all the way up to my brain (or so it seemed). I looked like Marcia Brady after she got hit with the football. The results came back positive. I remember not really understanding what it meant, but both my parents broke down when the doctor told them, so I knew it was really bad. The only thing I could relate Wegener's to at the time was AIDS, the only other auto-immune disease I had ever heard of. Naturally I freaked out.
I started treatment right away. I wont go into what it was, because I did that in my post yesterday. Actually, I think I may stop here for now. This post has been awfully long. I'll continue the story tomorrow.
Once upon a time, or more precisely, sometime probably in November of 2001, I had a cold. It was a typical coughy sneezey uckiness that colds usually are, but it lingered a bit longer than it should have. After a while, I went to my doctor and he gave me anti-biotics. Funny thing was, the cold didn't improve. In fact, in got worse. I was tired and woozy all the time with a persistent cough. And I was having nosebleeds just about every day.
Nosebleeds are not a new thing for me- I've gotten them my whole life, especially in winter when the air starts to get a little bit drier and colder- so these didn't cause much concern at first. They started lasting longer and longer though and occurring two or three times a day. I was a little worried (and frustrated, 'cause you really can't do anything while your nose is bleeding), but when I mentioned it to my parents, they dismissed it. I had seen doctors about nosebleeds before, and they have never been very concerned or helpful.
Since my cold wasn't getting any better, I went back to my doctor who gave me another antibiotic. When he looked up my nose, like they do, he started a bleeder. After I bled in his office for about 15 minutes with no sign of it letting up, he sent me across the hall to the Ear Nose and Throat (ENT) guys. They managed to get the bleeding to mostly stop and then cauterized some bits of my nose. On my way out the door, it started bleeding again. So I went back in the chair and the ENTs cauterized some more. Again, as we were leaving, it started bleeding again, but there wasn't much tissue left to cauterize so we just left.
The end of December and the beginning of January are kind of a blur for me. I was still coughing all the time. I couldn't get a full nights sleep because I would wake up at 3 or 4 in the morning with a bloody nose that would last an hour or more. On New Year's Eve, I had plans to go to a party, but around 9 I fell asleep on the couch and slept there until 1:30. I slept through the big moment! I hadn't done that since I was 6.
When school started after winter break, I had a hard time getting through the days. One day, my nose started bleeding in the middle of my first period math class. I spent the next hour and a half bleeding in the bathroom. I just barely made it to my next class before it ended and I went home after that. I was light-headed from loosing all that blood, and I was tired (the normal state for me those days).
The nosebleeds started coming with pain. My nose hurt all the time, so I took ibuprofen for that. Not such a good idea in retrospect, as ibuprofen is a blood thinner and I was, you know, bleeding a a lot. It was a good day if I only bled for half and hour.
The week I went to the hospital, I went to school on Monday and came home before first period. I slept all day and went back for play practice. I had a fairly decent role in Macbeth and I didn't want to lose it. The next day I slept all day and just made it to rehearsal; the director ran through my scene really quickly and then sent me home. I didn't make it at all on Wednesday.
Wednesday night I had another nose bleed that lasted 2 hours. I was in tears from the pain and the frustration and the lack of sleep. My parents called my doctor (at 1 am) and he told us to go to the emergency room at Primary Children's Hospital in the morning. So on the morning of January 10, we did. At the ER, they ran some tests and took a chest x-ray. There were spots on my lungs so they said it might be pneumonia, but my other symptoms didn't make sense with that diagnosis. They decided to check me in and run some more tests. Once in my room, I called the drama teacher and told him I was in the hospital and wouldn't be at rehearsal. I also called my friend Cory, who I was supposed to go to Jr Prom with that Saturday and told him I couldn't go.
The next few days I barely remember anything. I slept most of the time. I was on morphine for the pain in my nose. Twice a day someone would come it and take blood for more tests. I must have seen every doctor in the area, but I was so out of it, I had no idea who they were or what they were doing. Finally Dr. Bohnsack figured it out. All the signs pointed to Wegener's, but he recommended doing a biopsy of some of the tissue in my nose just to be sure. So into surgery went I.
After the biopsy, my nose was packed with gauze all the way up to my brain (or so it seemed). I looked like Marcia Brady after she got hit with the football. The results came back positive. I remember not really understanding what it meant, but both my parents broke down when the doctor told them, so I knew it was really bad. The only thing I could relate Wegener's to at the time was AIDS, the only other auto-immune disease I had ever heard of. Naturally I freaked out.
I started treatment right away. I wont go into what it was, because I did that in my post yesterday. Actually, I think I may stop here for now. This post has been awfully long. I'll continue the story tomorrow.
Tuesday, September 25, 2007
That's SICK
Hey everybody! It's Vasculitis Awareness Week!
Anyone who has been reading this blog for a while, or actually knows me, or both, knows that I have vasculitis in the form of Wegener's Granulomatosis. I've blogged about my experiences with it before (click here to read my previous posts) and right now I don't really have anything new to say. I've been in remission for a little over three years (go me!) (knock on wood) and doing great. I have every intention of making it to five and throwing the biggest party ever to celebrate.
Even though I have blogged about some aspects of my Wegener's, I haven't really gone into what it is in general, or even how it specifically manifested for me. So that is what this post is going to be about.
Wegener's is a form of vasculitis that affects... well, it can affect just about everything. Mostly it goes after the sinuses and lungs and often will involve kidneys, ears, eyes, throat, skin and what the text books like to call "other body organs." Like I said, it can affect just about everything. I was lucky enough to only have it affect my lungs and nose, and only in a minor way. The last chest x-ray I had showed a little scar tissue, and my nose has gone a bit funny, but no other perminant damage.
So what happens in the affected areas is this: the blood vessels get inflamed and little clusters of granulomas may occur. What the hell is a granuloma? Good question. A granuloma is *ahem* an inflammatory tumor or growth composed of granulation tissue. I like to think of them as little clumps of yuck.
The symptoms of Wegener's are really fun because they are normal everyday kinds of things (at least at first). Some symptoms include: runny nose, nose bleeds, cough, fever, fatigue, joint pain, ear aches. So really, things that could easily be just a cold or flu. The trick is that they don't go away or respond to normal treatment (like antibiotics). There are also a slew of blood tests that can sometimes indicate that the disease is present. Often a biopsy is needed to make a diagnosis, but even that is only about 50% indicative.
Treatment is where is really gets fun though. Generally it involves chemo-therapy and steriods. There are many variations and combinations of different drugs that patients get, so I'm just going to tell you about me. My treatment lasted about two years. I started out with intravenus cytoxan and a corticosteriod (I don't remember what it was exactly. It made everything I ate taste really bitter though) while I was in the hospital. After I was released, I had to take massive doses of Prednisone and anti-biotics. I also had to go back to the hospital overnight every so many days for more chemo.
Eventually I moved on to taking cytoxan orally. As I got better my doctor slowly tapered my meds. About six months after the initial diagnosis, I had a little flare up and had to do a few outpatient IV steriods. Finally, I was able to move on to methotrexate- basically a matenence drug.
Well, this post is probably long enough. I'll post again tomorrow and tell you all more about my particular case. Anyone who read this is encouraged to share with everyone they know. Vasculitis is rare, and rarely diagnosed. A little awareness wont hurt anyone.
For further reading, check these out:
V.F. very dry explaination
Wiki entry
Anyone who has been reading this blog for a while, or actually knows me, or both, knows that I have vasculitis in the form of Wegener's Granulomatosis. I've blogged about my experiences with it before (click here to read my previous posts) and right now I don't really have anything new to say. I've been in remission for a little over three years (go me!) (knock on wood) and doing great. I have every intention of making it to five and throwing the biggest party ever to celebrate.
Even though I have blogged about some aspects of my Wegener's, I haven't really gone into what it is in general, or even how it specifically manifested for me. So that is what this post is going to be about.
Wegener's is a form of vasculitis that affects... well, it can affect just about everything. Mostly it goes after the sinuses and lungs and often will involve kidneys, ears, eyes, throat, skin and what the text books like to call "other body organs." Like I said, it can affect just about everything. I was lucky enough to only have it affect my lungs and nose, and only in a minor way. The last chest x-ray I had showed a little scar tissue, and my nose has gone a bit funny, but no other perminant damage.
So what happens in the affected areas is this: the blood vessels get inflamed and little clusters of granulomas may occur. What the hell is a granuloma? Good question. A granuloma is *ahem* an inflammatory tumor or growth composed of granulation tissue. I like to think of them as little clumps of yuck.
The symptoms of Wegener's are really fun because they are normal everyday kinds of things (at least at first). Some symptoms include: runny nose, nose bleeds, cough, fever, fatigue, joint pain, ear aches. So really, things that could easily be just a cold or flu. The trick is that they don't go away or respond to normal treatment (like antibiotics). There are also a slew of blood tests that can sometimes indicate that the disease is present. Often a biopsy is needed to make a diagnosis, but even that is only about 50% indicative.
Treatment is where is really gets fun though. Generally it involves chemo-therapy and steriods. There are many variations and combinations of different drugs that patients get, so I'm just going to tell you about me. My treatment lasted about two years. I started out with intravenus cytoxan and a corticosteriod (I don't remember what it was exactly. It made everything I ate taste really bitter though) while I was in the hospital. After I was released, I had to take massive doses of Prednisone and anti-biotics. I also had to go back to the hospital overnight every so many days for more chemo.
Eventually I moved on to taking cytoxan orally. As I got better my doctor slowly tapered my meds. About six months after the initial diagnosis, I had a little flare up and had to do a few outpatient IV steriods. Finally, I was able to move on to methotrexate- basically a matenence drug.
Well, this post is probably long enough. I'll post again tomorrow and tell you all more about my particular case. Anyone who read this is encouraged to share with everyone they know. Vasculitis is rare, and rarely diagnosed. A little awareness wont hurt anyone.
For further reading, check these out:
V.F. very dry explaination
Wiki entry
Wednesday, May 16, 2007
Living With It
It sucks having an autoimmune disease. It sucks having it be in remission and it sucks trying to find the balance between abject fear of relapse and a normal, healthy life. It sucks having a rare autoimmune disease because no one really understands how much it sucks.
There was an article in Self Magazine's March 2007* issue that said it very nicely: ...with severe autoimmune illness, you get to go through all the official cancer crap without getting any of the cancer credit. There is no pretty ribbon to adorn your lapel. You do not get a story line on Sex and the City, nor do you rock out at the Grammys. You cannot purchase lovely pink products to help find a cure.
Not to belittle people who have had cancer - it's not easy dealing with that either - but do you know how many time I have wished that I had cancer instead of Wegener's? It's not easy, but it's much easier for cancer people because they have a gigantic support system and publicity and just tons of people they can relate to and share their experience.
I know that makes me sound like a terrible person, but it's really true. Cancer survivors also have the joy of not worrying if every cough, headache, nosebleed, earache or joint/muscle ache is a symptom of their cancer coming back. I do. It sucks.
A friend of mine pointed out the other day that I let Wegener's Granulomatosis be a fairly major thing in my life (well, no shit!) and that I should try to make it influence me less or not at all. Because whether or not I have a relapse is out of my control, he essentially said I should ignore the disease. His sister has had cancer and he used her as an example of how one should cope. He actually kind of pissed me off because he implied that I was a slave to WG and that I should really just be passive about it.
That's not really a plausible idea. I have to pay very close attention to any symptoms that might indicate a relapse because, while I can't control if a relapse happens, I can control how soon it's diagnosed. Catching a relapse early could save me from being on dialisis for the rest of my life or keep my nose from collapsing completely. I've found a few support groups online too. It's comforting to have found people who went through something similar, and it's helpful to be aware of what I can maybe expect if I do have a relapse. Not actively dealing with WG is likely to be more detrimental than not.
The truth is I don't really let it have that much influence on my life. If I were to really let Wegener's control my life, I would be a total hypocondriac and would never do anything but worry about it. I do very normal things for a person my age. There are a few things I don't do because they would increase the risk of me getting sick, but they're kind of stupid things to do anyway. I don't even talk to most of my friends about it because right now, it's not a really big deal. Occasionally they'll ask me about it, and I'll tell them, but I seldom bring it up.
Blah! I promise my next blog will be happy. This one and the one before are a bit ponderous.
*I couldn't find a link to the Self article itself that didn't require some sort of password. I've posted it as a comment though (it's kind of long so I don't want to put it on the main page). I highly recommend reading it; it's a great article.
There was an article in Self Magazine's March 2007* issue that said it very nicely: ...with severe autoimmune illness, you get to go through all the official cancer crap without getting any of the cancer credit. There is no pretty ribbon to adorn your lapel. You do not get a story line on Sex and the City, nor do you rock out at the Grammys. You cannot purchase lovely pink products to help find a cure.
Not to belittle people who have had cancer - it's not easy dealing with that either - but do you know how many time I have wished that I had cancer instead of Wegener's? It's not easy, but it's much easier for cancer people because they have a gigantic support system and publicity and just tons of people they can relate to and share their experience.
I know that makes me sound like a terrible person, but it's really true. Cancer survivors also have the joy of not worrying if every cough, headache, nosebleed, earache or joint/muscle ache is a symptom of their cancer coming back. I do. It sucks.
A friend of mine pointed out the other day that I let Wegener's Granulomatosis be a fairly major thing in my life (well, no shit!) and that I should try to make it influence me less or not at all. Because whether or not I have a relapse is out of my control, he essentially said I should ignore the disease. His sister has had cancer and he used her as an example of how one should cope. He actually kind of pissed me off because he implied that I was a slave to WG and that I should really just be passive about it.
That's not really a plausible idea. I have to pay very close attention to any symptoms that might indicate a relapse because, while I can't control if a relapse happens, I can control how soon it's diagnosed. Catching a relapse early could save me from being on dialisis for the rest of my life or keep my nose from collapsing completely. I've found a few support groups online too. It's comforting to have found people who went through something similar, and it's helpful to be aware of what I can maybe expect if I do have a relapse. Not actively dealing with WG is likely to be more detrimental than not.
The truth is I don't really let it have that much influence on my life. If I were to really let Wegener's control my life, I would be a total hypocondriac and would never do anything but worry about it. I do very normal things for a person my age. There are a few things I don't do because they would increase the risk of me getting sick, but they're kind of stupid things to do anyway. I don't even talk to most of my friends about it because right now, it's not a really big deal. Occasionally they'll ask me about it, and I'll tell them, but I seldom bring it up.
Blah! I promise my next blog will be happy. This one and the one before are a bit ponderous.
*I couldn't find a link to the Self article itself that didn't require some sort of password. I've posted it as a comment though (it's kind of long so I don't want to put it on the main page). I highly recommend reading it; it's a great article.
Monday, October 09, 2006
Oops, Missed.
I just discovered that the last week in September was Vasculitis Awareness Week. This used to be Wegener's Granulomatosis Awareness Week before the Wegener's Granulomatosis Association changed to the Vasculitis Foundation and thereby became slightly less cool as far as I am concerned. This is nothing against Vasculitis, but I liked it better when it was just my little disease instead of something that is just part of it.
The point, though, is that I missed the awareness week once again. Every year since I was diagnosed (4 years ago!... wow I didn't realise it had been that long) I've found out about the week just after it happens. I guess there's nothing to stop me from making people aware now, and that's kinda why I'm blogging about it, but it's not as neat when it's not a mass effort.
Still, letting people know about Wegener's Granulomatosis is important becaues it's been a major thing in my life. I posted about it back in march and things now (concerning my illness anyway) are about the same. My WG is still in remission (YAY! ... knock on wood) and I'm doing great, health wise. I can't believe that I've been living with it for four years.
The point, though, is that I missed the awareness week once again. Every year since I was diagnosed (4 years ago!... wow I didn't realise it had been that long) I've found out about the week just after it happens. I guess there's nothing to stop me from making people aware now, and that's kinda why I'm blogging about it, but it's not as neat when it's not a mass effort.
Still, letting people know about Wegener's Granulomatosis is important becaues it's been a major thing in my life. I posted about it back in march and things now (concerning my illness anyway) are about the same. My WG is still in remission (YAY! ... knock on wood) and I'm doing great, health wise. I can't believe that I've been living with it for four years.
I was actually really lucky- relatively anyway. I was diagnosed before any permenant organ damage could happen and I had a fairly easy treatment. Granted, the treatment wasn't really all that easy, but I didn't have any horrid side effects from any of the medication. Even the weight I gained from the prednisone was pretty minor compared to what some people go through with that lovely little drug.
Of course, there are always problems. I mean, at 17 it was not an easy thing to deal with. And now that I'm healthy again, it's hard for me to motivate myself to do the things I need to do. For example, I really need to make an appointment with my doctor - just for a check up. The thing is, it's hard to convince myself that I really need to see him. I feel fine. No symptoms. I very much don't want to spend 2 hours in the doctor's office, get poked with a needle, and pee in a cup just to get told that I'm doing fine.
I need to do it anyway.Friday, March 03, 2006
The Doc is In
I've decided that I like the TV show House. I started watching it when USA started showing it on Friday nights. I don't watch it religiously because, like most people my age, I usually go out on Fridays. I rather like the series though - it entertains me. Did you know that Dr House is played by the guy who was Percy in the Black Adder series. I think that's funny, but it's a total side note. I watched House tonight and was kinda excited when one of the requisite (at least) 3 diagnoses was Wegener's Granulomatosis (AKA WG).
I was diagnosed with WG (as most anyone reading this already knows, maybe) my Sr year of high school. Wegener's is one of those auto-imune gems that no one has ever heard of. For a super cool text book explaination of what it's all about This site or This one are pretty decent.
As of right now, my Wegener's has been in full remission (read: I've been completely off medication) for around two years. Go me! Yes that is something major to celebrate! I'm very freakin' proud of myself there, and from this distance I can look back and see the whole thing a little more calmly than ever before.
It took a long-ass time to get over this thing. I gave up a lot, but I honestly gained a lot too. It's amazing how much you can learn when you face your own mortality at 17. I had to postpone college to finish treatment. That was probably one of the most traumatic things for me, and I fought my doctor on the issue for a long time. But it was pretty apparent that I wasn't well enough to go and it's hard to switch hospitals/states in the middle of chemo-therapy. That's right, I went through chemo. And I was on Prednisone- the worst drug EVER!! It made me gain 50 lbs in 2 months. I hated that. I hated running my hand through my hair and coming away with a handful of it. I hated being stuck at home. I hated not having the energy to do everything I was used to doing. I hated the whole two years I was undergoing treatment. Two years is a LONG time to be sick.
About a year and a half ago I had a little bit of a breakdown. I left Fort Lewis College about a month into the semester and came home because I thought I might, maybe be having a relapse and it freaked me out. Turns out it was just a cold. I went to a shrink when I came back (this was a really serious breakdown) and worked though a lot of mental issues I had involving WG. There was a lot of anxiety about a relapse and also a little Post Traumatic Stress. The chances of a relapse are pretty high. Especiall since I was diagnosed so young, I have a lot of life during which it could happen. Hopefully I've worked through my issues enough that I can deal with it if/when it happens. Hopefully I'll never have to. That's a pretty big hope.
I was diagnosed with WG (as most anyone reading this already knows, maybe) my Sr year of high school. Wegener's is one of those auto-imune gems that no one has ever heard of. For a super cool text book explaination of what it's all about This site or This one are pretty decent.
As of right now, my Wegener's has been in full remission (read: I've been completely off medication) for around two years. Go me! Yes that is something major to celebrate! I'm very freakin' proud of myself there, and from this distance I can look back and see the whole thing a little more calmly than ever before.
It took a long-ass time to get over this thing. I gave up a lot, but I honestly gained a lot too. It's amazing how much you can learn when you face your own mortality at 17. I had to postpone college to finish treatment. That was probably one of the most traumatic things for me, and I fought my doctor on the issue for a long time. But it was pretty apparent that I wasn't well enough to go and it's hard to switch hospitals/states in the middle of chemo-therapy. That's right, I went through chemo. And I was on Prednisone- the worst drug EVER!! It made me gain 50 lbs in 2 months. I hated that. I hated running my hand through my hair and coming away with a handful of it. I hated being stuck at home. I hated not having the energy to do everything I was used to doing. I hated the whole two years I was undergoing treatment. Two years is a LONG time to be sick.
About a year and a half ago I had a little bit of a breakdown. I left Fort Lewis College about a month into the semester and came home because I thought I might, maybe be having a relapse and it freaked me out. Turns out it was just a cold. I went to a shrink when I came back (this was a really serious breakdown) and worked though a lot of mental issues I had involving WG. There was a lot of anxiety about a relapse and also a little Post Traumatic Stress. The chances of a relapse are pretty high. Especiall since I was diagnosed so young, I have a lot of life during which it could happen. Hopefully I've worked through my issues enough that I can deal with it if/when it happens. Hopefully I'll never have to. That's a pretty big hope.
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