Guest guest Posted October 9, 2001 Report Share Posted October 9, 2001 My name is Sue Staniec & I was just diagnosed 9/26. I'm scared. I guess you could say I've had it for quite some time, over a year. It started about a year or so ago when my eyes & nose started swelling & my nose was bright red & so painful. They checked this & that & decided to do a ct of my sinuses which were horrible. Suffered like this until Feb. when I finally had sinus surgery which was desparately needed. I also had costochondritis in Dec. Then came throat swelling in the Spring, uveitis, iritis & a stroke in my left eye starting Mem. day. During all this I lost my Dr. of 15 years in Dec. so had to start with a new one. Three weeks ago she was thinking I needed to see a counselor because all the tests came back normal, lupus, diabetes, etc. Talk about feeling like a hypochondriac. Then came 9/22. We were at our grandsons 4th bday & my right ear started to hurt in the crease on top. I figured I had been bitten by something, but it really hurt & I didn't remember being bit. By Monday I was in horrendous pain, went to the Dr. & they said it was cellulitis, gave me some antibiotics & sent me on my way. By Wed. the ear had tripled in size, was hot & red. Went to the Dr. & they didn't quite know what to do with me. She figured she was dealing with a massive infection. Sent me through the ER since there were no beds to have IV antibiotics. By this time the pain was excrutiating, I was nauseated & terribly thirsty. The ER Dr. said it was the worst case of swimmers ear he had ever seen. My. Dr. had left specific instructions for me to be admitted and not to be sent home. I had to go through ER because there were no beds to be had. They gave me morphine for the pain which did nothing, something for the nausea. The next day it was like I was a celebrity. The attendings were bringing in scores of students because you only see an ear like this in the textbooks & the one had only seen it once. One Dr. finally told me I had relapsing polychondritis. I figured it was something that would get better since they were giving me Darvocet, antibiotics & stuff for nausea & I felt a little better. Briefly saw a rheumatologist on Thurs. She came back on Friday & every question she asked me answered one of mine, i. e. nose & eye swelling, iritis, costochondritis, etc. They put me on prednisone & the swelling was down by at least half by Friday. They sent me home Friday night knowing nothing about what was wrong with me. I had a name but that is all. My ear is still painful & now the right eye is involved. The pred gave me mood swings so I have been a roller coaster of emotion. I don't know if I have an ear infection or if it is the disease. Will see the rheumatologist tomorrow who I really like, & hopefully find out what is going to happen to me. Have sooo many questions. It is very reassuring knowing there is a support group out there & there are people out there just like me. I found you last week but didn't say anything because I didn't know what to say. My husband is the product of a mean alchoholic mother & he learned at an early age that if you just ignore it & don't make a big deal then you don't upset the apple cart. I have tried to explain to him that not knowing will not make this go away. It is here, it is real & I have it. He also told me I shouldn't talk too much about it because my friends will get tired of hearing about it & shut me out. So I haven't had much support here. I have a dear friend who is diabetic. We were camping with some friends this weekend & she & I talked this morning for a long time. She sort of understands because she also didn't want to believe about being diabetic. She told me I can talk all I want & even if she doesn't understand, she will be there to listen. I have a wonderful base of friends that are beside me all the way. I'm just very confused & upset. I'm sure I will get the support I truly need from this board since we are all in the same boat. Tomorrow the haze will be lifted & I will find out what I am up against. I know it will be an uphill battle & that there is no end in sight, but knowing that I am not alone will help me get through it. Thanks for listening to me ramble on and on. It is after midnight here & my eyes are killing me. I am going to sign off for now & go to bed. Thank you so much for this wonderful board. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2001 Report Share Posted October 9, 2001 My name is Sue Staniec & I was just diagnosed 9/26. I'm scared. I guess you could say I've had it for quite some time, over a year. It started about a year or so ago when my eyes & nose started swelling & my nose was bright red & so painful. They checked this & that & decided to do a ct of my sinuses which were horrible. Suffered like this until Feb. when I finally had sinus surgery which was desparately needed. I also had costochondritis in Dec. Then came throat swelling in the Spring, uveitis, iritis & a stroke in my left eye starting Mem. day. During all this I lost my Dr. of 15 years in Dec. so had to start with a new one. Three weeks ago she was thinking I needed to see a counselor because all the tests came back normal, lupus, diabetes, etc. Talk about feeling like a hypochondriac. Then came 9/22. We were at our grandsons 4th bday & my right ear started to hurt in the crease on top. I figured I had been bitten by something, but it really hurt & I didn't remember being bit. By Monday I was in horrendous pain, went to the Dr. & they said it was cellulitis, gave me some antibiotics & sent me on my way. By Wed. the ear had tripled in size, was hot & red. Went to the Dr. & they didn't quite know what to do with me. She figured she was dealing with a massive infection. Sent me through the ER since there were no beds to have IV antibiotics. By this time the pain was excrutiating, I was nauseated & terribly thirsty. The ER Dr. said it was the worst case of swimmers ear he had ever seen. My. Dr. had left specific instructions for me to be admitted and not to be sent home. I had to go through ER because there were no beds to be had. They gave me morphine for the pain which did nothing, something for the nausea. The next day it was like I was a celebrity. The attendings were bringing in scores of students because you only see an ear like this in the textbooks & the one had only seen it once. One Dr. finally told me I had relapsing polychondritis. I figured it was something that would get better since they were giving me Darvocet, antibiotics & stuff for nausea & I felt a little better. Briefly saw a rheumatologist on Thurs. She came back on Friday & every question she asked me answered one of mine, i. e. nose & eye swelling, iritis, costochondritis, etc. They put me on prednisone & the swelling was down by at least half by Friday. They sent me home Friday night knowing nothing about what was wrong with me. I had a name but that is all. My ear is still painful & now the right eye is involved. The pred gave me mood swings so I have been a roller coaster of emotion. I don't know if I have an ear infection or if it is the disease. Will see the rheumatologist tomorrow who I really like, & hopefully find out what is going to happen to me. Have sooo many questions. It is very reassuring knowing there is a support group out there & there are people out there just like me. I found you last week but didn't say anything because I didn't know what to say. My husband is the product of a mean alchoholic mother & he learned at an early age that if you just ignore it & don't make a big deal then you don't upset the apple cart. I have tried to explain to him that not knowing will not make this go away. It is here, it is real & I have it. He also told me I shouldn't talk too much about it because my friends will get tired of hearing about it & shut me out. So I haven't had much support here. I have a dear friend who is diabetic. We were camping with some friends this weekend & she & I talked this morning for a long time. She sort of understands because she also didn't want to believe about being diabetic. She told me I can talk all I want & even if she doesn't understand, she will be there to listen. I have a wonderful base of friends that are beside me all the way. I'm just very confused & upset. I'm sure I will get the support I truly need from this board since we are all in the same boat. Tomorrow the haze will be lifted & I will find out what I am up against. I know it will be an uphill battle & that there is no end in sight, but knowing that I am not alone will help me get through it. Thanks for listening to me ramble on and on. It is after midnight here & my eyes are killing me. I am going to sign off for now & go to bed. Thank you so much for this wonderful board. Sue Quote Link to comment Share on other sites More sharing options...
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