jlove
04-19-2014, 02:16 AM
I guess my GPAstory started 8 years ago now. I was 16 and came home from a weekend ski trip with a cold that made me lose my voice. After a few weeks, my voice still had not come back and my right eyelid was drooping. I didn't think these things were related at all. Come to think of it, I don't remember what I thought about losing my voice but we thought the eyelid drooping was from a stye in my eyelid. After seeing a few opthamologists, one noticed my right pupil was slightly lower than my left. I had a scan (MRI, CT... I don't remember) and it showed a mass between my eye and brain in my right orbit. I had a biopsy done at CHOP in Philly and they said it was a sclerosing pseudotumor. It went away after a heavy dose of Prednisone, which effectively crushed me for 5 months, being that I was a 16 year old girl in high school. My face blew up, I had acne, I gained 50 pounds. I started my Junior year of high school looking and feeling terrible but I didn't really have any idea why. I was also experiencing subglottal stenosis (narrowing of my airway) and I was seeing a rheumatologist but my bloodwork was inconclusive and no one could make a diagnosis at that point.
I started running and I joined a dance team and lost all of the weight I put on. I finished out high school feeling fairly aside from my lost voice. I got used to hearing, "are you sick? you sound hoarse" and, "wow were you at a concert this weekend?" It took some time to learn to be okay with my new voice, especially since I was a singer my whole life and I had to give that up. I had an evil choir teacher in high school who picked on me for switching from singing soprano to alto. It still makes me angry to think about it. Other teachers were great about it, though, so it wasn't all bad. I missed a week of school Junior year of high school to have surgery to open up my airway. My ENT lasered the area and treated it with a steroid, I believe.
I went to college at Penn (in Philadelphia), where I was already seeing my ENT and rheumatologist regularly. My voice became status quo at college because people didn't know me before the lost voice. I had another surgery to open up my airway Sophomore year of college (and more steroids and more weight gain). Junior year I started walking a ton and lost all of the weight I put on again. By the end of Junior year I was really happy and feeling almost totally normal (aside from the lost voice). Around March of my Senior year, however, I started feeling very congested and experiencing nasal crusting. I thought it might be allergies but I saw an allergist, who found nothing unusual. I saw my ENT soon after and she seemed alarmed. She said the nasal crusting could be the third strike that would officially diagnose me with GPA. My dad works at the Hospital of the University of Penn and he knew there was going to be a new chair of Rheumatology who was an expert in Vasculitis, Dr. Merkel. I was sort of seeing another Rheum at Penn but I really didn't like him. In October 2013 I became one of Dr. Merkel's first patients in Philly and he more or less diagnosed me on the spot after an hour of telling him my story and his reviewing my medical history. I started a low dose of methotrexate and am now taking 25 mg a week plus folic acid.
So after 7 years I finally had a diagnosis. Dr. Merkel says he doesn't think I have active disease, which I am very grateful for. Now I struggle with the nose crusting from the scarring that occured in my nose as a result of GPA. I rinse with saline three times a day. I'm constantly applying saline gel in my nose. I need to drink more water to keep from drying out. I know things could be worse for me but it has been a struggle to accept the fact that this is my reality now. I need to think about bringing saline with me on trips and having gel with me in my clutch if I go out to a bar (I'm 24). Drinking alcohol is not so much fun anymore as my stomach is very sensitive and I hate feeling so incredibly dried out by booze. Bloody tissues make up 90% of the trash in my house and I never have enough air. Between the blockage in my throat and the crusting in my nose, I have to really think about my breathing sometimes. I don't want it to be loud (a girl I work with said I was Darth Vader breathing once. rude.) but I also need to make sure I get enough air. My apartment is only reached by 5 flights of stairs and I often have to stop halfway through to regain control over my breath. I get really annoyed when people ask me if I have athsma or something. I like to think people don't notice but I have had several people close to me say something about my breathing. It makes me feel sick and damaged.
Another thing I struggle with is talking to my friends about this. Like I said before, I like to pretend there's nothing wrong with me and my breathing but sometimes I just want them to understand that I'm doing the best I can. I feel like they think I'm out of shape because I lose my breath on the stairs but breathing itself is just a lot more difficult for me than it is for them. I think when people aren't sick like this, it's easy to take something so simple as your breath for granted. But then, I don't want them to treat me like a sick person. I'm sure this is something others have dealt with... if you have any advice, please share!
I'm also seeking advice from people who deal with nasal crusting. My ENT just told me to try lanolin in my nose and adding baby shampoo to my saline rinse. Are there any other tricks people use? I'm hoping if I can really get a handle on the crusting that I can improve my ability to breathe. I really miss being able to run. In the past year I have taken up yoga and have found that extremely beneficial to me in many ways. I have learned how to command my breath and I'm also getting stronger. At this point, I guess I know the GPA isn't going away so I need to really take care of my body to reduce the amount of stress I put it through. I'm trying to eat more vegetables and less processed food. From what I've read lately, it seems your diet can really affect inflammation in your body.
While I would never wish this on anyone, I'm not sure I would have learned this early on how important it is to take care of myself. At least there's a silver lining to this, maybe?
Anyway, sorry for the wall of text. Most people I encounter have no idea what GPA is. I'm really looking forward to connecting with others who share similar struggles with me. I have a strong support system in my life but there are times when I feel like I either can't open up to people or I don't want them to see me in a certain way. Not everyone has had to deal with problems like this so I can't expect them to really understand what I'm going through. And in some ways, I feel like this because I don't want GPA to be the defining factor of who I am. It is certainly part of who I am, but it's not everything.
Aaaand I'm done. I swear I'm not usually such a serious person. I promise I won't always post epic novels on here! :cool1:
I started running and I joined a dance team and lost all of the weight I put on. I finished out high school feeling fairly aside from my lost voice. I got used to hearing, "are you sick? you sound hoarse" and, "wow were you at a concert this weekend?" It took some time to learn to be okay with my new voice, especially since I was a singer my whole life and I had to give that up. I had an evil choir teacher in high school who picked on me for switching from singing soprano to alto. It still makes me angry to think about it. Other teachers were great about it, though, so it wasn't all bad. I missed a week of school Junior year of high school to have surgery to open up my airway. My ENT lasered the area and treated it with a steroid, I believe.
I went to college at Penn (in Philadelphia), where I was already seeing my ENT and rheumatologist regularly. My voice became status quo at college because people didn't know me before the lost voice. I had another surgery to open up my airway Sophomore year of college (and more steroids and more weight gain). Junior year I started walking a ton and lost all of the weight I put on again. By the end of Junior year I was really happy and feeling almost totally normal (aside from the lost voice). Around March of my Senior year, however, I started feeling very congested and experiencing nasal crusting. I thought it might be allergies but I saw an allergist, who found nothing unusual. I saw my ENT soon after and she seemed alarmed. She said the nasal crusting could be the third strike that would officially diagnose me with GPA. My dad works at the Hospital of the University of Penn and he knew there was going to be a new chair of Rheumatology who was an expert in Vasculitis, Dr. Merkel. I was sort of seeing another Rheum at Penn but I really didn't like him. In October 2013 I became one of Dr. Merkel's first patients in Philly and he more or less diagnosed me on the spot after an hour of telling him my story and his reviewing my medical history. I started a low dose of methotrexate and am now taking 25 mg a week plus folic acid.
So after 7 years I finally had a diagnosis. Dr. Merkel says he doesn't think I have active disease, which I am very grateful for. Now I struggle with the nose crusting from the scarring that occured in my nose as a result of GPA. I rinse with saline three times a day. I'm constantly applying saline gel in my nose. I need to drink more water to keep from drying out. I know things could be worse for me but it has been a struggle to accept the fact that this is my reality now. I need to think about bringing saline with me on trips and having gel with me in my clutch if I go out to a bar (I'm 24). Drinking alcohol is not so much fun anymore as my stomach is very sensitive and I hate feeling so incredibly dried out by booze. Bloody tissues make up 90% of the trash in my house and I never have enough air. Between the blockage in my throat and the crusting in my nose, I have to really think about my breathing sometimes. I don't want it to be loud (a girl I work with said I was Darth Vader breathing once. rude.) but I also need to make sure I get enough air. My apartment is only reached by 5 flights of stairs and I often have to stop halfway through to regain control over my breath. I get really annoyed when people ask me if I have athsma or something. I like to think people don't notice but I have had several people close to me say something about my breathing. It makes me feel sick and damaged.
Another thing I struggle with is talking to my friends about this. Like I said before, I like to pretend there's nothing wrong with me and my breathing but sometimes I just want them to understand that I'm doing the best I can. I feel like they think I'm out of shape because I lose my breath on the stairs but breathing itself is just a lot more difficult for me than it is for them. I think when people aren't sick like this, it's easy to take something so simple as your breath for granted. But then, I don't want them to treat me like a sick person. I'm sure this is something others have dealt with... if you have any advice, please share!
I'm also seeking advice from people who deal with nasal crusting. My ENT just told me to try lanolin in my nose and adding baby shampoo to my saline rinse. Are there any other tricks people use? I'm hoping if I can really get a handle on the crusting that I can improve my ability to breathe. I really miss being able to run. In the past year I have taken up yoga and have found that extremely beneficial to me in many ways. I have learned how to command my breath and I'm also getting stronger. At this point, I guess I know the GPA isn't going away so I need to really take care of my body to reduce the amount of stress I put it through. I'm trying to eat more vegetables and less processed food. From what I've read lately, it seems your diet can really affect inflammation in your body.
While I would never wish this on anyone, I'm not sure I would have learned this early on how important it is to take care of myself. At least there's a silver lining to this, maybe?
Anyway, sorry for the wall of text. Most people I encounter have no idea what GPA is. I'm really looking forward to connecting with others who share similar struggles with me. I have a strong support system in my life but there are times when I feel like I either can't open up to people or I don't want them to see me in a certain way. Not everyone has had to deal with problems like this so I can't expect them to really understand what I'm going through. And in some ways, I feel like this because I don't want GPA to be the defining factor of who I am. It is certainly part of who I am, but it's not everything.
Aaaand I'm done. I swear I'm not usually such a serious person. I promise I won't always post epic novels on here! :cool1: