Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 Dawn, I had a flare a few months ago. I had to start on the pred. again. When I did it caused my BP to go up. I then got edema in my legs. I guess the water pill is for both but mostly for the fluid in my legs. Hope that helps. I am on an immuno supressant so I don't have to take the pred all the time. That is a good thing for me because the pred. always gives me such a bad time. I hate the pred but I guess it is good because it helps the damage that the RP can cause. Take care Lots of Love Glenda --- Dawn dmorgan26347@...> wrote: > glenda > glad to hear your bp is doing ok, i wonder if that > is > part of rp. mine is high too. hope you get back > home > soon and no iches(chickenpox) come to visit. Is > the > fluid pill because of the BP or because of the meds > for the RP? dawn > --- eyeoreluv@... wrote: __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 GLenda Not sure if my BP is because of RP or not it started 2-3 years ago, the drs. thought i was having a MI, but did not fit the exact symtoms. Now my RP DR. thinks my symtoms were from the RP, said that heart cartidge and chest where probably inflamed which made it feel like a MI, ever since that my BP goes really high sometimes and then drops really low sometimes, (225/145to a low of 70/40). So it has been difficult to get it regulated. Dawn --- eyeoreluv eyeoreluv@...> wrote: > Dawn, > I had a flare a few months ago. I had to start on > the > pred. again. When I did it caused my BP to go up. > I > then got edema in my legs. I guess the water pill > is > for both but mostly for the fluid in my legs. Hope > that helps. I am on an immuno supressant so I don't > have to take the pred all the time. That is a good > thing for me because the pred. always gives me such > a > bad time. I hate the pred but I guess it is good > because it helps the damage that the RP can cause. > > Take care > Lots of Love > Glenda > > --- Dawn dmorgan26347@...> wrote: > > glenda > > glad to hear your bp is doing ok, i wonder if that > > is > > part of rp. mine is high too. hope you get back > > home > > soon and no iches(chickenpox) come to visit. Is > > the > > fluid pill because of the BP or because of the > meds > > for the RP? dawn > > --- eyeoreluv@... wrote: > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 In a message dated 1/10/01 4:36:45 AM Pacific Standard Time, dmorgan26347@... writes: << the drs. thought i was having a MI, >> Dawn, i can't tell you how many times I went to the ER thinking I was having an MI. Really scarey. Now I just figure it is either the RP or the fibro. Hope I'd know the difference if it were a MI.LOL Hope you start feeling better soon . My thoughts are with you. Hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2001 Report Share Posted January 13, 2001 thats for sure, I would rather have had the new glasses sydromn than rp, how about you. HA, Knew there had to be answer somewhere. dawn --- Woods susuw@...> wrote: > Guess we were just looking for answers Dawn. I sure > liked our answer better > than the one the doctors came up with, don't you? > LOL > > >>>>>>>>>>>>>>>> > Sounds very familiar. I did the same thing, new > glasses, swollen ears????? weird hun? > dawn > > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system > (http://www.grisoft.com). > Version: 6.0.219 / Virus Database: 103 - Release > Date: 12/5/00 > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2001 Report Share Posted January 13, 2001 Dawn I got them for awhile when I first was on the Imuran. I think it was due to a lack of folic acid. I started taking that and they went away. Don't take it now and haven't had the prob. since. Knock on wood! Lots of love Glenda --- Dawn dmorgan26347@...> wrote: > TO everyone in the group > > I have a question, and susan suggested asking the > group. Does anyone there have a problem with > blisters > in their mouth, or mouth ulcers. I have never in > my > life had this happen till recently, since rp. Is > this part of the RP, or is it from another > associated > disease? Also what will help. Theyare almost like > water blisters, Not really so painfull but very > anoying. Also get lots of mouth ulers, those are > very > painful. dawn > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 HI everyone I noticed that I had a lot of emails this morning I hope that doesn't mean everyone had a bad nite, like me. Had several episodes of choking and wheezing last night. Very annoying. Had a denist appt yesterday hope thats not what brought it on. To explain a little further about the eyes. My eyes are not red every day, but 3-4 days out of 7 they are completely white either. they range anywhere from pink to red on those days. Also sinus around eyes and eye lids seem to swell some. I have gone in the last 3 months from 60 mg to40 then to 30 then to 10 and that didn't work at all then back to 30 and now down to 25 mg of predisone. I told dr. that I thought 25 was to low but he ask that i try it for a couple of weeks then if it wasn't working let him know. Sometimes depending on what else is happening i get some pain but usually a lot of pressure with any swelling in my head are at all. welll enough gripping, i guess it comes out of me when i don't feel to good, HOPE YOU ALL HAVE A REALLY GOOD AND RP FREE DAY, DAWN --- Connie richac4@...> wrote: > Dawn, > I agree with . If your eyes are red and > swollen, I recommend > that you see an ophthalmologist ASAP, especially if > you are having > any PAIN in your eyes. You need to be evaluated to > see what is going > on there. BTW, I have had eye problems for years. > So if you have any > questions, please ask away!! > Take care. > Luv, > Connie R > > > > In a message dated 1/17/01 5:46:13 PM Pacific > Standard Time, > > dmorgan26347@y... writes: > > > > << I have had the ear pain and swelling, > > sinus swelling, eyes have been the color of red > and > > swollen, also some chest and trachea > involvement, >> > > > > Dawn, with these symptoms, are you sure that you > are on the right > dose of > > pred. Sounds like a major flare to me. If your > eyes are red, in > my opinion > > you need to see a dr fast. Any flare causes > damage. You want to > stop the > > flare as soon as possible. > > How long have you had these symptoms? > > > > Sleep????? What's that is right. I have only > slept 2 hours a > night for 5 > > years. I finally had a sleep study done and am > now on a c pap > machine. I > > have been using it about 3 weeks and am now seeing > a little > improvement. I > > have slept about 4-5 hours the last few nights. > YIPPEE!!!! > > > > Hope you and Amy start to feel better real soon. > > > > Know you are in my thoughts > > > > Hugs, > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Dawn, it still sounds to me like you need to see an opthamologist too. PLEASE don't let the symptoms continue. Never hurts to have it checked. Better safe than sorry. HOpe you have a good day too. Rest and enjoy the day. Hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Hi Dawn, Sorry to hear that you had such a bad night. I hope you start to feeling a little better soon. I'm sorry if I alarmed you about the eye thing. It sounds to me, in my amateur opinion, as if you may have a little episcleritis or allergy in your eyes. If so, the episcleritis can usually be treated quickly with steroid drops. Episcleritis is usually self-limiting and not signs of a systemic flare. However, if you ever develop red eyes (deep reddish, purple in color) with severe boring or aching pain that lasts for days or even weeks, you need to be checked by an eye doctor. Whenever this happens to me, it is usually caused by scleritis (with peripheral keratitis and anterior uveitis). And my doctors treat it very aggressively because it is a sign of a systemic flare and can be vision-threatening. Enough of that scary stuff!! Please take care and I hope you start to feel better soon and your doctors can get you feeling more comfortable. Thinking of you during our sleepless nights! Love, Connie R --- Dawn dmorgan26347@...> wrote: > HI everyone > I noticed that I had a lot of emails this morning I > hope that doesn't mean everyone had a bad nite, like > me. Had several episodes of choking and wheezing > last night. Very annoying. Had a denist appt > yesterday hope thats not what brought it on. To > explain a little further about the eyes. My eyes > are > not red every day, but 3-4 days out of 7 they are > completely white either. they range anywhere from > pink to red on those days. Also sinus around eyes > and > eye lids seem to swell some. I have gone in the > last 3 months from 60 mg to40 then to 30 then to 10 > and that didn't work at all then back to 30 and now > down to 25 mg of predisone. I told dr. that I > thought 25 was to low but he ask that i try it for a > couple of weeks then if it wasn't working let him > know. Sometimes depending on what else is happening > i > get some pain but usually a lot of pressure with any > swelling in my head are at all. welll enough > gripping, i guess it comes out of me when i don't > feel to good, HOPE YOU ALL HAVE A REALLY GOOD > AND > RP FREE DAY, DAWN > --- Connie richac4@...> wrote: > > Dawn, > > I agree with . If your eyes are red and > > swollen, I recommend > > that you see an ophthalmologist ASAP, especially > if > > you are having > > any PAIN in your eyes. You need to be evaluated > to > > see what is going > > on there. BTW, I have had eye problems for years. > > So if you have any > > questions, please ask away!! > > Take care. > > Luv, > > Connie R > > > > > > > In a message dated 1/17/01 5:46:13 PM Pacific > > Standard Time, > > > dmorgan26347@y... writes: > > > > > > << I have had the ear pain and swelling, > > > sinus swelling, eyes have been the color of > red > > and > > > swollen, also some chest and trachea > > involvement, >> > > > > > > Dawn, with these symptoms, are you sure that you > > are on the right > > dose of > > > pred. Sounds like a major flare to me. If your > > eyes are red, in > > my opinion > > > you need to see a dr fast. Any flare causes > > damage. You want to > > stop the > > > flare as soon as possible. > > > How long have you had these symptoms? > > > > > > Sleep????? What's that is right. I have only > > slept 2 hours a > > night for 5 > > > years. I finally had a sleep study done and am > > now on a c pap > > machine. I > > > have been using it about 3 weeks and am now > seeing > > a little > > improvement. I > > > have slept about 4-5 hours the last few nights. > > YIPPEE!!!! > > > > > > Hope you and Amy start to feel better real soon. > > > > > > Know you are in my thoughts > > > > > > Hugs, > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Connie sometimes, this rp stuff gets really scarry, and i'm not sure what to do with all of it. The Choking Scares me more than the swelling, because sometimes I can't breath through it. Feels like my throat is swelling shut. The swelling and red eyes and the pain I can deal with, most of the time, but the breathing gets to me and really makes me very tired wears me out but can't sleep through it either. oh well enough griping i guess when a person feels bad they grip more, thanks for listening and responding, dawn --- Connie richac4@...> wrote: > Hi Dawn, > Sorry to hear that you had such a bad night. I hope > you start to feeling a little better soon. > > I'm sorry if I alarmed you about the eye thing. It > sounds to me, in my amateur opinion, as if you may > have a little episcleritis or allergy in your eyes. > If so, the episcleritis can usually be treated > quickly > with steroid drops. Episcleritis is usually > self-limiting and not signs of a systemic flare. > > However, if you ever develop red eyes (deep reddish, > purple in color) with severe boring or aching pain > that lasts for days or even weeks, you need to be > checked by an eye doctor. Whenever this happens to > me, it is usually caused by scleritis (with > peripheral > keratitis and anterior uveitis). And my doctors > treat > it very aggressively because it is a sign of a > systemic flare and can be vision-threatening. > > Enough of that scary stuff!! Please take care and I > hope you start to feel better soon and your doctors > can get you feeling more comfortable. > > Thinking of you during our sleepless nights! > Love, > Connie R > > > --- Dawn dmorgan26347@...> wrote: > > HI everyone > > I noticed that I had a lot of emails this morning > I > > hope that doesn't mean everyone had a bad nite, > like > > me. Had several episodes of choking and wheezing > > last night. Very annoying. Had a denist appt > > yesterday hope thats not what brought it on. To > > explain a little further about the eyes. My eyes > > are > > not red every day, but 3-4 days out of 7 they are > > completely white either. they range anywhere from > > pink to red on those days. Also sinus around eyes > > and > > eye lids seem to swell some. I have gone in the > > last 3 months from 60 mg to40 then to 30 then to > 10 > > and that didn't work at all then back to 30 and > now > > down to 25 mg of predisone. I told dr. that I > > thought 25 was to low but he ask that i try it for > a > > couple of weeks then if it wasn't working let him > > know. Sometimes depending on what else is > happening > > i > > get some pain but usually a lot of pressure with > any > > swelling in my head are at all. welll enough > > gripping, i guess it comes out of me when i don't > > feel to good, HOPE YOU ALL HAVE A REALLY GOOD > > AND > > RP FREE DAY, DAWN > > --- Connie richac4@...> wrote: > > > Dawn, > > > I agree with . If your eyes are red and > > > swollen, I recommend > > > that you see an ophthalmologist ASAP, especially > > if > > > you are having > > > any PAIN in your eyes. You need to be evaluated > > to > > > see what is going > > > on there. BTW, I have had eye problems for > years. > > > So if you have any > > > questions, please ask away!! > > > Take care. > > > Luv, > > > Connie R > > > > > > > > > > In a message dated 1/17/01 5:46:13 PM Pacific > > > Standard Time, > > > > dmorgan26347@y... writes: > > > > > > > > << I have had the ear pain and swelling, > > > > sinus swelling, eyes have been the color of > > red > > > and > > > > swollen, also some chest and trachea > > > involvement, >> > > > > > > > > Dawn, with these symptoms, are you sure that > you > > > are on the right > > > dose of > > > > pred. Sounds like a major flare to me. If > your > > > eyes are red, in > > > my opinion > > > > you need to see a dr fast. Any flare causes > > > damage. You want to > > > stop the > > > > flare as soon as possible. > > > > How long have you had these symptoms? > > > > > > > > Sleep????? What's that is right. I have only > > > slept 2 hours a > > > night for 5 > > > > years. I finally had a sleep study done and > am > > > now on a c pap > > > machine. I > > > > have been using it about 3 weeks and am now > > seeing > > > a little > > > improvement. I > > > > have slept about 4-5 hours the last few > nights. > > > YIPPEE!!!! > > > > > > > > Hope you and Amy start to feel better real > soon. > > > > > > > > Know you are in my thoughts > > > > > > > > Hugs, > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Connie another PS to my email you ask how the pain in my eyes felt. well it feels like a boring searing hot pain that goes straight through and into my brain. sometimes but not always I get major headaches with it too. dawn --- Connie richac4@...> wrote: > Hi Dawn, > Sorry to hear that you had such a bad night. I hope > you start to feeling a little better soon. > > I'm sorry if I alarmed you about the eye thing. It > sounds to me, in my amateur opinion, as if you may > have a little episcleritis or allergy in your eyes. > If so, the episcleritis can usually be treated > quickly > with steroid drops. Episcleritis is usually > self-limiting and not signs of a systemic flare. > > However, if you ever develop red eyes (deep reddish, > purple in color) with severe boring or aching pain > that lasts for days or even weeks, you need to be > checked by an eye doctor. Whenever this happens to > me, it is usually caused by scleritis (with > peripheral > keratitis and anterior uveitis). And my doctors > treat > it very aggressively because it is a sign of a > systemic flare and can be vision-threatening. > > Enough of that scary stuff!! Please take care and I > hope you start to feel better soon and your doctors > can get you feeling more comfortable. > > Thinking of you during our sleepless nights! > Love, > Connie R > > > --- Dawn dmorgan26347@...> wrote: > > HI everyone > > I noticed that I had a lot of emails this morning > I > > hope that doesn't mean everyone had a bad nite, > like > > me. Had several episodes of choking and wheezing > > last night. Very annoying. Had a denist appt > > yesterday hope thats not what brought it on. To > > explain a little further about the eyes. My eyes > > are > > not red every day, but 3-4 days out of 7 they are > > completely white either. they range anywhere from > > pink to red on those days. Also sinus around eyes > > and > > eye lids seem to swell some. I have gone in the > > last 3 months from 60 mg to40 then to 30 then to > 10 > > and that didn't work at all then back to 30 and > now > > down to 25 mg of predisone. I told dr. that I > > thought 25 was to low but he ask that i try it for > a > > couple of weeks then if it wasn't working let him > > know. Sometimes depending on what else is > happening > > i > > get some pain but usually a lot of pressure with > any > > swelling in my head are at all. welll enough > > gripping, i guess it comes out of me when i don't > > feel to good, HOPE YOU ALL HAVE A REALLY GOOD > > AND > > RP FREE DAY, DAWN > > --- Connie richac4@...> wrote: > > > Dawn, > > > I agree with . If your eyes are red and > > > swollen, I recommend > > > that you see an ophthalmologist ASAP, especially > > if > > > you are having > > > any PAIN in your eyes. You need to be evaluated > > to > > > see what is going > > > on there. BTW, I have had eye problems for > years. > > > So if you have any > > > questions, please ask away!! > > > Take care. > > > Luv, > > > Connie R > > > > > > > > > > In a message dated 1/17/01 5:46:13 PM Pacific > > > Standard Time, > > > > dmorgan26347@y... writes: > > > > > > > > << I have had the ear pain and swelling, > > > > sinus swelling, eyes have been the color of > > red > > > and > > > > swollen, also some chest and trachea > > > involvement, >> > > > > > > > > Dawn, with these symptoms, are you sure that > you > > > are on the right > > > dose of > > > > pred. Sounds like a major flare to me. If > your > > > eyes are red, in > > > my opinion > > > > you need to see a dr fast. Any flare causes > > > damage. You want to > > > stop the > > > > flare as soon as possible. > > > > How long have you had these symptoms? > > > > > > > > Sleep????? What's that is right. I have only > > > slept 2 hours a > > > night for 5 > > > > years. I finally had a sleep study done and > am > > > now on a c pap > > > machine. I > > > > have been using it about 3 weeks and am now > > seeing > > > a little > > > improvement. I > > > > have slept about 4-5 hours the last few > nights. > > > YIPPEE!!!! > > > > > > > > Hope you and Amy start to feel better real > soon. > > > > > > > > Know you are in my thoughts > > > > > > > > Hugs, > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2001 Report Share Posted January 20, 2001 Dawn So glad that you enjoyed the fun last night!) There is never a dull moment around here!LOL If you don't hurt we will make you hurt from laughing!) Take care and know I will enjoy getting to know you! Lots of Love Glenda --- Dawn dmorgan26347@...> wrote: > Good Afternoon Everyone > > Hope your day is going great. I sure did have fun > last night chating with everyone. Don't think I > have > laughed so much for a long time, since i joined this > group. All the funny stuff that comes through along > with the great info on RP sure does make life a > little eaiser. hope you all have a great day. > dawn __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2001 Report Share Posted January 30, 2001 In a message dated 1/30/01 5:03:05 AM Pacific Standard Time, susuw@... writes: << did you happen to find out anything about how rp can affect the kidneys, or digestive track. >> Dawn, I'm looking too. Can't seem to find anything yet. Will let you know. Hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2001 Report Share Posted January 30, 2001 Kindeys are mentioned in Dr. Trentham's article. I have kidney disease with RP. It shows itself as proteinuria. Re: Dawn In a message dated 1/30/01 5:03:05 AM Pacific Standard Time, susuw@... writes: << did you happen to find out anything about how rp can affect the kidneys, or digestive track. >> Dawn, I'm looking too. Can't seem to find anything yet. Will let you know. Hugs DISCLAIMER!! WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2001 Report Share Posted January 30, 2001 thank you so much for the reply, when you say protenuia, is this something that you will only be aware of when you have a urine test, or blood work done or is it something that will have symtoms to tell you to go to Dr. and have it checked. My concern is not knowing till its too late, and if I should be asking My Dr. about a certain test to have done or not. dawn --- S scotts@...> wrote: > Kindeys are mentioned in Dr. Trentham's article. I > have kidney disease with > RP. It shows itself as proteinuria. > > Re: Dawn > > > In a message dated 1/30/01 5:03:05 AM Pacific > Standard Time, > susuw@... writes: > > << did you happen to find out anything about how > rp can affect the kidneys, or digestive track. >> > Dawn, I'm looking too. Can't seem to find anything > yet. Will let you know. > > Hugs > > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY > INFORMATION THAT IS RECEIVED > HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH > YOUR DOCTOR BEFORE TRYING > ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE > FOR YOUR PHYSICIAN AND > ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT > AND TREATMENT MAYBE > DIFFERENT FOR MANY OF US. THANK YOU > > > __________________________________________________ Get personalized email addresses from Yahoo! Mail - only $35 a year! http://personal.mail.yahoo.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2001 Report Share Posted January 30, 2001 and susan did you both read the post from this article he mentioned is where i also heard about the kidney problem. dawn --- RCColloran@... wrote: > In a message dated 1/30/01 5:03:05 AM Pacific > Standard Time, > susuw@... writes: > > << did you happen to find out anything about how > rp can affect the kidneys, or digestive track. >> > Dawn, I'm looking too. Can't seem to find anything > yet. Will let you know. > > Hugs > > __________________________________________________ Get personalized email addresses from Yahoo! Mail - only $35 a year! http://personal.mail.yahoo.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 Need to have a urine test. A dipstick is all that is requied at first. Re: Dawn > > > In a message dated 1/30/01 5:03:05 AM Pacific > Standard Time, > susuw@... writes: > > << did you happen to find out anything about how > rp can affect the kidneys, or digestive track. >> > Dawn, I'm looking too. Can't seem to find anything > yet. Will let you know. > > Hugs > > > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY > INFORMATION THAT IS RECEIVED > HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH > YOUR DOCTOR BEFORE TRYING > ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE > FOR YOUR PHYSICIAN AND > ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT > AND TREATMENT MAYBE > DIFFERENT FOR MANY OF US. THANK YOU > > > __________________________________________________ Get personalized email addresses from Yahoo! Mail - only $35 a year! http://personal.mail.yahoo.com/ DISCLAIMER!! WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2001 Report Share Posted February 17, 2001 Hi Dawn, I think I will remember this phrase and tell it to some of my docs sometime....lol That was well said.....:) Love ya Lu .. Sometimes I would like to just haul off and put my foot right up a Dr.' Butt so far they would have to have it surgicaly removed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2003 Report Share Posted June 18, 2003 Dawn, I'm so sorry for all that you are having to endure, ontop of having to care for your children and keep up with the house,etc.etc. I know it must be tough with all the demands on your time and attention and then feeling so badly yourself. I will continue to pray for you. I too am having the continual swollen lymphnodes and spiked a temp again this afternoon. My throat is sore, but really doesn't look near as bad as it usually does when it is infected. I don't know what to do. I feel like the child who screamed wolf if I go into the doc and they say it's viral...but I know with this immune system suppression and with having mito you aren't suppose to let things go either. What's a girl to do?? I know what you mean about feeling so bad and the docs blowing you off that it couldn't be something "bad" too. I wish that for once my doc would really take me seriously. I was so thankful when Dr. Cohen put in a letter to my doc that if the carnitine deficiency wasn't corrected I could have a fatal cardiomyopathy. I know that seems awful for me to say that, and never would wish for something like that to happen..but I really think he needed to hear it. It's like when I tell him myself he thinks I am exaggerating or that nothing could ever happen to me. Don't get me wrong he is really a good doc. but just hasn't dealt with anything like this. He needs to be educated like so many other docs across the country. Sorry I got off a tangent..it's just that I totally feel for you and wish there was something more I could do to help you out. On a positive note; Great news about . I hope that her numbers are still good and that she goes a record number of weeks without a tranfusion. You get yourself some rest and let me know if there is something I can do to help more. Is your mom able to keep the kids for you sometimes so you can get a break?? I know she was with you at the appt when I met you. Hope tom. is a better day for you. Hugs and Prayers, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2003 Report Share Posted June 25, 2003 , So funny that you posted a note to me...I posted one to you last night and it isn't posted yet. My infectious disease doc appt is tomorrow (thurs). I had to see my OBGYN yestarday for a pubic bone growth that I had before surgery that they said was scar tissue. It is swollen and painful. He said he looked at it during my surgery and didn't see scar tissue, but there is a bone growth. So what is it? Off to another specialist (ortho) on Fri. My daughter has a chronic illness but I am the one at the doctors all of the time! I am so frustrated! I feel like I am crazy! I know I feel the growth and it hurts but no one can figure it out. This is morbid, so beware: I know that one day when I am dead, I want it on my tombstone... " See I told you I was sick! " I know that is bad but I am tired of being shipped from doc to doc in search of what? I know you've been there, as I have with . I'm not sure I have the energy for this! Sorry to ramble, I just feel overwhelmed today! Thanks for thinking of us!! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2003 Report Share Posted June 26, 2003 Dawn, I've been there and continue to have those kinda days here and there where I wonder what is REALLY wrong with me?? And what can I do to get help?? It's very frustrating at times. I hope that your appts go well, and that you aren't completely exhausted from all of this by the weekend. Praying that 's tranfusion goes smoothly and that she goes weeks longer between the next one. You are a very strong person and I know you can do it! Hang in there. Friendship improves happiness and abates misery, by the doubling of our joys and the dividing of our grief. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 To all of you wondering where all the nurses have gone. As you know there is a nation wide shortage of nurses and unfortunately many of the people in the profession are supporting families and home health nurses are at the bottom of the pay scale. At least in southeast Missouri that is the situation. In this part of the country the home health nurses make about $7 less an hour than a nurse in the hospital setting. Also, it is very difficult to find a nurse that wants to take care of a child that is terminal, we know that for a fact as Audrey has had three nurses besides the our wonderful Joan. Joan is absolutely fabulous and loves Audrey as her own, but as she told me, she could not afford to do home nursing if it weren't for another income she has due to her husband having died on the job many years ago. My heart goes out to all of you who haven't been as lucky as Audrey to have a wonderful nurse to help out. Things need to change but it doesn't seen likely in the near future, they say the nursing shortage is going to go on for the next 20 years. Great for those of us in the nursing profession. Well, that is my 2 cents worth. Kathy, grandma to Audrey 23 mos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 Dawn, it will get better, just take it one day at a time. I remember when hailee was on iv theraphy it was so hard to keep her still, I had trap her in her highchair in front of elmo's world We don’t get nursing either, and would be in the same boat as you, no nurses. We do get a nurse to come out and access her port every three weeks. Do you get respite?? so you can go out and have some your time?? home from hospital Thanks for all of the wishes and prayers. We came home today (thurs). She will continue on IV antibiotic for 8 days. I am so overwhelmed... meals and gtube meds, therapies (OT<PT<ST), 2 am tubefeed, IV antibioitics 3 x day (an hour at a time), and two other kids to take care of, not to mention the house, laundry, etc,etc. I don't mean to complain, but being a single parent with this much responsibilty is so hard. I love my kids and would do anything for them, but how??? Thanks for listening. I am sure that I will get through this. Our insurance company is not quick to offer nursing help, but even when I can get hours approved, there are no nurses to staff with! Where did the nurses go? (I used to be a nurse...I guess they are at home taking care of their Mito kids???)I've been cooped up in the hospital for 5 days, sorry to ramble so. DawnPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 Dawn, I haven't heard anymore yet about my carnitine levels. My mom called his office yesterday to inquire about the further testing. Jane told her that it was further testing for Dr. to do on my skin biopsy for immuno blasts??? Any ideas what that is?? She wasn't sure how long those tests would take. I guess we will go from there. Thanks for asking. I hope today went smoother for you. You are a very strong woman and I admire you for doing as well as you are with all that you have on you. Have a nice weekend. Blessings, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 Again the disparity bothers me. In Wisconsin we have something called independent nursing. These nurses are paid $31-$32 by the state to do pediatric home care. They do not work for an agency so they can pick their own cases. Parents hire and fire them. It is a good system in that it has attracted more nurses to home care since the pay is above hospital pay and very much above agency pay ($19/hour). They are their own bosses though they are responsible for their own paperwork and benefits. It is a bad system in that there is a lot of corruption especially with parents who simply don't understand the system enough to question or know that the nurses are not doing what they should be doing or billing for more hours than they are already there. There really is no overseeing agency. In theory the state is auditing things but they don't have enough people to do that effectively. Still there is a huge shortage of nurses both in and out of the hospital. My Sam can get 24 hours a day nursing and Zach qualifies for 16 hours a day.....and we have - are you ready - 16 hours a week filled for both together!!! The home nurses we have interviewed are not comfortable with Sam's level of care and to a lesser extent Zach's. (as if nursing is a profession that is going to be 100% comfortable). So I work the 16 hours that I have nursing and that is it for my time away from the kids. I hope the govt and the nsg profession can figure out a way to attract more nurses because it is only going to get worse with the aging population. Anne Re: dawn To all of you wondering where all the nurses have gone. As you know there is a nation wide shortage of nurses and unfortunately many of the people in the profession are supporting families and home health nurses are at the bottom of the pay scale. At least in southeast Missouri that is the situation. In this part of the country the home health nurses make about $7 less an hour than a nurse in the hospital setting. Also, it is very difficult to find a nurse that wants to take care of a child that is terminal, we know that for a fact as Audrey has had three nurses besides the our wonderful Joan. Joan is absolutely fabulous and loves Audrey as her own, but as she told me, she could not afford to do home nursing if it weren't for another income she has due to her husband having died on the job many years ago.My heart goes out to all of you who haven't been as lucky as Audrey to have a wonderful nurse to help out. Things need to change but it doesn't seen likely in the near future, they say the nursing shortage is going to go on for the next 20 years. Great for those of us in the nursing profession.Well, that is my 2 cents worth.Kathy, grandma to Audrey 23 mos Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2003 Report Share Posted August 6, 2003 Dawn, There are ways to work around this...See if Dr. Cohen or Natowicz can make you an appt. Maybe they could pull some strings for you since has mito and is a patient at CCF. God will make a way where there seems to be no way. I'll be praying as always...Hugs, Quote Link to comment Share on other sites More sharing options...
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