My RP

[Guest guest]

I started with symptoms a couple of years ago, but most have been the last year. I had eye, nose & cheek swelling & redness last year around Thanksgiving time & was very ill with flu like symptoms & fatigue. They tried to say the redness was rosecea (sp?). But I also had terrible pain. They thought it was sinus which were real bad. Had sinus surgery in Feb. The ENT took one look at my face before the surgery & said it was not swelling from the sinus but looked more like lupus. Was tested & everything came back normal. After the surgery the pain & redness went away.

In May of this year my left eye was swelled almost out of the socket, was red & real painful. Went to the Internist & she walked in & said you have conjunctivitis. Put the yellow drops in & looked & found the pressure was dangerously high. Sent me to the Opthalmologist who said I had iritis. Put me on steroid drops & two others around the clock. Went back weekly. In the middle of June the day before vacation I was on my way to the eye guy & couldn't figure out why this car was coming at me but wouldn't go around the car he was passing. I was having double vision & didn't know it. I had not been out in over a week. My vision had been not good since May. He did a test with a ruler like thing & a white dot on the wall. He wasn't sure if I had had a stroke behind the eye or 6th nerve palsy or a tumor. he didn't want me going on vacation to Disney World because he thought we were flying & didn't want to take a chance of pressure in the plane. My hubby talked to him later & when he found out we were camping down there, he left us go. The double vision lasted about 3 more days. Have had trouble with the vision since then, but at least it's not double. The eyes are very dry because of the RP & the dryness in the house because of winter. Have to use thick drops to keep them lubricated. He is talking about blocking my tear ducts so the oils will stay in the eyes rather than drain. He also thought it was lupus or autoimmune & ran a full battery of tests which were all normal.

In September I was real sick. I was totally drained, had headaches & just couldn't function. I stayed in bed all day which is something I never do. Hell, I don't even lay down on the couch so you know I had to be sick. My right ear swelled to at least 3-4 times the normal size. It was red, hot, painful & had blister like lesions on it. Went to the Dr. who said it was cellulitis & put me on antibiotics. This was on a Monday. By Weds. it was worse so I called the Dr. & she gave me an attitude but told me to come in. I had the feeling she had been thinking I was a hypochondriac because I had been having symptoms but everything was coming back normal. She looked at the ear & then had another Dr. look at it. She wanted me to go to the rheumatologist but it was after 5 & couldn't get through. After checking out my chart & putting 2 & 2 together she figured it was something major & put me in the hospital which was not accepting any patients because they were full. She sent me through the ER & called them & specifically told them I did not have cellulitis, but something more serious & to admit me. I can't believe how sick I was. She figured this way she could have all the Dr's. see me at once while it was real active. They started me on steroids & by Friday I was much better. I was the high point of rounds though since most Dr's only see this in text books. From what I've seen in books at the library, those ears were nothing compared to mine.

They released me on 40 mg. of prednisone & then tried to cut me down fast which didn't work so I flared. Finally had to go to 60 mg & then slowly got down to 40 when I flared again right before thanksgiving. I had to change rheumy's in the midst of this. The new one was going to start me on Imuran next week, but since the flare isn't calming down I was there on Monday. I told him about raspiness in my voice & burning in my throat & chest. The gastro guy did a test before Thanksgiving & said everything is fine. The rheumy talked to the gastro guy & he thinks I have a yeast infection in my vocal cords & chest so he didn't want to start the Imuran because he said if there is an infection it would go rampant through my body. So to be on the safe side he put me on an antibiotic for 3 weeks & then we'll see about the Imuran. The gastro guy may also scope me then. I am also staying on the 60 of pred until I see him. Of course with the holidays I am just sitting and doing nothing. Yeah right.

I am on tons of medications for blood pressure, gerd, arthritis, vitamins, calcium etc. I try to take it one day at a time but it is so hard & I am so discouraged. I will say that I have been pushing but at least my shopping is done which I have done most of with my pupt together the 11 embroidered stockings I made for my family the last 2 years. You might think that by sitting & wrapping it's no big thing but it really takes a lot out of you.

Well that's my loooooong story.

Susiecue

[Guest guest]

I started with symptoms a couple of years ago, but most have been the last year. I had eye, nose & cheek swelling & redness last year around Thanksgiving time & was very ill with flu like symptoms & fatigue. They tried to say the redness was rosecea (sp?). But I also had terrible pain. They thought it was sinus which were real bad. Had sinus surgery in Feb. The ENT took one look at my face before the surgery & said it was not swelling from the sinus but looked more like lupus. Was tested & everything came back normal. After the surgery the pain & redness went away.

In May of this year my left eye was swelled almost out of the socket, was red & real painful. Went to the Internist & she walked in & said you have conjunctivitis. Put the yellow drops in & looked & found the pressure was dangerously high. Sent me to the Opthalmologist who said I had iritis. Put me on steroid drops & two others around the clock. Went back weekly. In the middle of June the day before vacation I was on my way to the eye guy & couldn't figure out why this car was coming at me but wouldn't go around the car he was passing. I was having double vision & didn't know it. I had not been out in over a week. My vision had been not good since May. He did a test with a ruler like thing & a white dot on the wall. He wasn't sure if I had had a stroke behind the eye or 6th nerve palsy or a tumor. he didn't want me going on vacation to Disney World because he thought we were flying & didn't want to take a chance of pressure in the plane. My hubby talked to him later & when he found out we were camping down there, he left us go. The double vision lasted about 3 more days. Have had trouble with the vision since then, but at least it's not double. The eyes are very dry because of the RP & the dryness in the house because of winter. Have to use thick drops to keep them lubricated. He is talking about blocking my tear ducts so the oils will stay in the eyes rather than drain. He also thought it was lupus or autoimmune & ran a full battery of tests which were all normal.

In September I was real sick. I was totally drained, had headaches & just couldn't function. I stayed in bed all day which is something I never do. Hell, I don't even lay down on the couch so you know I had to be sick. My right ear swelled to at least 3-4 times the normal size. It was red, hot, painful & had blister like lesions on it. Went to the Dr. who said it was cellulitis & put me on antibiotics. This was on a Monday. By Weds. it was worse so I called the Dr. & she gave me an attitude but told me to come in. I had the feeling she had been thinking I was a hypochondriac because I had been having symptoms but everything was coming back normal. She looked at the ear & then had another Dr. look at it. She wanted me to go to the rheumatologist but it was after 5 & couldn't get through. After checking out my chart & putting 2 & 2 together she figured it was something major & put me in the hospital which was not accepting any patients because they were full. She sent me through the ER & called them & specifically told them I did not have cellulitis, but something more serious & to admit me. I can't believe how sick I was. She figured this way she could have all the Dr's. see me at once while it was real active. They started me on steroids & by Friday I was much better. I was the high point of rounds though since most Dr's only see this in text books. From what I've seen in books at the library, those ears were nothing compared to mine.

They released me on 40 mg. of prednisone & then tried to cut me down fast which didn't work so I flared. Finally had to go to 60 mg & then slowly got down to 40 when I flared again right before thanksgiving. I had to change rheumy's in the midst of this. The new one was going to start me on Imuran next week, but since the flare isn't calming down I was there on Monday. I told him about raspiness in my voice & burning in my throat & chest. The gastro guy did a test before Thanksgiving & said everything is fine. The rheumy talked to the gastro guy & he thinks I have a yeast infection in my vocal cords & chest so he didn't want to start the Imuran because he said if there is an infection it would go rampant through my body. So to be on the safe side he put me on an antibiotic for 3 weeks & then we'll see about the Imuran. The gastro guy may also scope me then. I am also staying on the 60 of pred until I see him. Of course with the holidays I am just sitting and doing nothing. Yeah right.

I am on tons of medications for blood pressure, gerd, arthritis, vitamins, calcium etc. I try to take it one day at a time but it is so hard & I am so discouraged. I will say that I have been pushing but at least my shopping is done which I have done most of with my pupt together the 11 embroidered stockings I made for my family the last 2 years. You might think that by sitting & wrapping it's no big thing but it really takes a lot out of you.

Well that's my loooooong story.

Susiecue