Guest guest Posted September 1, 2002 Report Share Posted September 1, 2002 Hi Venita, Good to hear from you! Sounds like a busy month you have had....WOW. Hope Tuesday doesn't take too much out of you. Those colonoscopy's can wear you down. Actually if your test in on Tuesday morning you will probably be spending Monday evening on the toilet!! Not tuesday morning.....everything is usually through you by then....not the most pleasant test in the world.... That is strange that you lost your appetite. Could it be from the anemia??? Do they know what caused it? Hope you feel better soon...... Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2002 Report Share Posted September 1, 2002 Oh, wow. Well at least it won't be two days towards it, but you can't eat all day on the day before??? Bummer......so I guess it will be two days....I am a little slow-today-hehe. Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2002 Report Share Posted September 1, 2002 Wow, Venita, I'm so sorry you've had such a crappy time of it lately. I do hope you're starting to come around now and are feeling a bit more like yourself. I'm sure you lost some weight if you weren't eating for so long. You're too hard on yourself. LOL. However, I do hope they're able to pinpoint what was wrong with you and if it was in fact a flare, hopefully the increased Pred. will take care of it. Please keep in touch and let us know how you are. I worry about you all. Love, Dawn vsjsas3 wrote: > Hello everyone. Hope that you all are doing well and that you are > having a wonderful Labor Day Weekend. > > I have had an interesting month. I had started PT the middle of July > and absolutely loved it. I was going twice a week. By mid August I > was a lot more flexible than I had been and was pleased. > > At the same time extreme fatigue began to set in along with > dizziness and nauseau (my pred was at 10 mg.). On Sunday Aug. 18 > along with the above, I lost my appetite and was having horrible neck > pains. By Monday, Aug 26. I left a message for my doctor because I > had barely eaten in 8 days. My diet had consisted of broth, toast > and rice. I wasn't sure if this was happening because of the pred or > if I was having a flare. After I didn't hear from my doctor, I had > my husband take me to the emergency. I felt that at least they would > do bloodwork and that would give me some indication of what was going > on. > > Most of my bloodwork came back okay (had to wait on CPk and other > liver enzyme tests) and the only concern they had was my anemia, > which I was already aware of. My Rheumy was fortunately in the > hospital when the ER doctor contacted her so she came to the ER to > see me. She wanted me to increase my pred to 12.5 for now. She said > my cortisol levels were okay. I have been having difficulty > swallowing so she ordered a swallowing test, which I had Friday. > everything looked okay. > > So I still don't know what caused it. I started eating again on > Wed. August 28. Although I barely ate anything for 9 days, I don't > feel that I lost any weight. > > I go in Tues. for my colonoscopy so I won't be eating anything for > Labor Day. Which is fine but I don't look forward to spending > Tuesday morning on the toilet. I meet with my Rheumy on Sept 10. > Hopefully we'll be able to discuss where I am and what plan of action > we are going to take. > > That was my month in a nutshell. > > Love to All > > Venita > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2002 Report Share Posted September 1, 2002 Hi Zanna, My colonoscopy is not until 3:15 p.m. so I start my drinking at 6:00 a.m. I wish I could have been scheduled in the morning so that I could get it over in done with. I hope you are doing okay today and not sweating too much Venita > Hi Venita, > Good to hear from you! Sounds like a busy month you have had....WOW. > > Hope Tuesday doesn't take too much out of you. Those colonoscopy's can wear > you down. Actually if your test in on Tuesday morning you will probably be > spending Monday evening on the toilet!! Not tuesday morning.....everything > is usually through you by then....not the most pleasant test in the world.... > > That is strange that you lost your appetite. Could it be from the anemia??? > Do they know what caused it? > > Hope you feel better soon...... > > Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2002 Report Share Posted September 1, 2002 Hi Dawn, Eventhough I haven't been posting much, I try to keep up with reading the messages. My computer is in the basement in our family room and it has been difficult for me to do the stairs. I will have my husband put it upstairs but have to decide where I want it. Once that's done I will be able to post more. The past month I have been coming down maybe every 3-4 days to check up on the posts. You know how it is when you let it go for that long. By the time I finish reading all the messages I am too tired to post myself. I hope all is well with you and I am continuing to pray for you and your family and your financial situation. Love Venita > > > Hello everyone. Hope that you all are doing well and that you are > > having a wonderful Labor Day Weekend. > > > > I have had an interesting month. I had started PT the middle of July > > and absolutely loved it. I was going twice a week. By mid August I > > was a lot more flexible than I had been and was pleased. > > > > At the same time extreme fatigue began to set in along with > > dizziness and nauseau (my pred was at 10 mg.). On Sunday Aug. 18 > > along with the above, I lost my appetite and was having horrible neck > > pains. By Monday, Aug 26. I left a message for my doctor because I > > had barely eaten in 8 days. My diet had consisted of broth, toast > > and rice. I wasn't sure if this was happening because of the pred or > > if I was having a flare. After I didn't hear from my doctor, I had > > my husband take me to the emergency. I felt that at least they would > > do bloodwork and that would give me some indication of what was going > > on. > > > > Most of my bloodwork came back okay (had to wait on CPk and other > > liver enzyme tests) and the only concern they had was my anemia, > > which I was already aware of. My Rheumy was fortunately in the > > hospital when the ER doctor contacted her so she came to the ER to > > see me. She wanted me to increase my pred to 12.5 for now. She said > > my cortisol levels were okay. I have been having difficulty > > swallowing so she ordered a swallowing test, which I had Friday. > > everything looked okay. > > > > So I still don't know what caused it. I started eating again on > > Wed. August 28. Although I barely ate anything for 9 days, I don't > > feel that I lost any weight. > > > > I go in Tues. for my colonoscopy so I won't be eating anything for > > Labor Day. Which is fine but I don't look forward to spending > > Tuesday morning on the toilet. I meet with my Rheumy on Sept 10. > > Hopefully we'll be able to discuss where I am and what plan of action > > we are going to take. > > > > That was my month in a nutshell. > > > > Love to All > > > > Venita > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2002 Report Share Posted September 2, 2002 Venita... Boy, when it rains, it pours, huh? Glad you went to the ER, though...at least you got some attention. Let us know how things are... Annette -----Original Message-----From: vsjsas3 Sent: Sunday, September 01, 2002 5:14 PMTo: OurMyositis Subject: Venita--Checking InHello everyone. Hope that you all are doing well and that you are having a wonderful Labor Day Weekend.I have had an interesting month. I had started PT the middle of July and absolutely loved it. I was going twice a week. By mid August I was a lot more flexible than I had been and was pleased. At the same time extreme fatigue began to set in along with dizziness and nauseau (my pred was at 10 mg.). On Sunday Aug. 18 along with the above, I lost my appetite and was having horrible neck pains. By Monday, Aug 26. I left a message for my doctor because I had barely eaten in 8 days. My diet had consisted of broth, toast and rice. I wasn't sure if this was happening because of the pred or if I was having a flare. After I didn't hear from my doctor, I had my husband take me to the emergency. I felt that at least they would do bloodwork and that would give me some indication of what was going on.Most of my bloodwork came back okay (had to wait on CPk and other liver enzyme tests) and the only concern they had was my anemia, which I was already aware of. My Rheumy was fortunately in the hospital when the ER doctor contacted her so she came to the ER to see me. She wanted me to increase my pred to 12.5 for now. She said my cortisol levels were okay. I have been having difficulty swallowing so she ordered a swallowing test, which I had Friday. everything looked okay. So I still don't know what caused it. I started eating again on Wed. August 28. Although I barely ate anything for 9 days, I don't feel that I lost any weight.I go in Tues. for my colonoscopy so I won't be eating anything for Labor Day. Which is fine but I don't look forward to spending Tuesday morning on the toilet. I meet with my Rheumy on Sept 10. Hopefully we'll be able to discuss where I am and what plan of action we are going to take. That was my month in a nutshell.Love to AllVenita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2002 Report Share Posted September 2, 2002 Hi Venita! Good to hear from you. Isn't PT great? I felt good during mine and when I remember to do the exercises! Gee, that neck pain was very strange...did the doc ever figure it out? Very strange that you couldn't eat. While I envy that (!!!!) I know it might not be the best thing in the world. Do you think it has to do with the swallowing problem you've encountered? Lots of times, when we're tired and overworked...overstressed, our bodies send us lots of signals. What are you doing for your anemia? When mine was bad, my rheumy told me to get Vitron-C. But I think it was Connie or maybe Lelia who recommended Yellow Burdock...and I've been taking that instead and keeping my numbers up. I'm thinking of you today as you go through the cleansing. Are you using the stuff in the gallon jug or the phos. soda...it's a little bottle, holds 3 T...it's a whole lot easier on ya. I didn't find the colonoscopy such a bad thing, but then the nurse said I must be one in a million. Relax, you get to watch it on TV...it'll never win an , tho! Hope you have a relaxing day. Lynn vsjsas3 wrote: Hello everyone. Hope that you all are doing well and that you are having a wonderful Labor Day Weekend.I have had an interesting month. I had started PT the middle of July and absolutely loved it. I was going twice a week. By mid August I was a lot more flexible than I had been and was pleased. At the same time extreme fatigue began to set in along with dizziness and nauseau (my pred was at 10 mg.). On Sunday Aug. 18 along with the above, I lost my appetite and was having horrible neck pains. By Monday, Aug 26. I left a message for my doctor because I had barely eaten in 8 days. My diet had consisted of broth, toast and rice. I wasn't sure if this was happening because of the pred or if I was having a flare. After I didn't hear from my doctor, I had my husband take me to the emergency. I felt that at least they would do bloodwork and that would give me some indication of what was going on.Most of my bloodwork came back okay (had to wait on CPk and other liver enzyme tests) and the only concern they had was my anemia, which I was already aware of. My Rheumy was fortunately in the hospital when the ER doctor contacted her so she came to the ER to see me. She wanted me to increase my pred to 12.5 for now. She said my cortisol levels were okay. I have been having difficulty swallowing so she ordered a swallowing test, which I had Friday. everything looked okay. So I still don't know what caused it. I started eating again on Wed. August 28. Although I barely ate anything for 9 days, I don't feel that I lost any weight.I go in Tues. for my colonoscopy so I won't be eating anything for Labor Day. Which is fine but I don't look forward to spending Tuesday morning on the toilet. I meet with my Rheumy on Sept 10. Hopefully we'll be able to discuss where I am and what plan of action we are going to take. That was my month in a nutshell.Love to AllVenita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Hi Venita... My goodness you are really having quite a time of it, aren't you? Please let us know how things go with your appts. and with plans for surgery. You're in our hearts and prayers. Annette -----Original Message-----From: vsjsas3 Sent: Wednesday, October 23, 2002 10:01 AMTo: OurMyositis Subject: Venita--Checking InHello Everyone,I hope that you all are well. I miss you all and think about you daily. I haven't been on in a couple of weeks and have a lot of catching up to do.Tommorrow I will be taking tests to determine if I have a syndrome known as Postural Orthostatic Tachycardia Syndrome (POTS). The ENT doc is pretty sure that I have it. Just another thing to add to the bucket. I have been experiencing a lot of dizziness for a while and went to the ophthamologist to make sure it wasn't my eyes. My eyes were okay for the most part, so she referred me to the ENT doc. While I was there he (ENT) asked me what happened to the right side of my face. I told him the story. He asked me if I have pain in my eye and I told him yes. He told me that the way my face is pulling down on my eye I could possibly end of losing my cornea. So on November 6 I will be going to a plastic surgeon/ENT doc to see if I need reconstructive surgery on the right side of my face. I have been living with an asymmetrical face for 20 years, so I would never have plastic surgery unless it was threatening something like my sight.I am redecorating my living room and dining room. My husband and I reupholstered our sofa and chairs and are now painting or at least my husband is painting. I helped him out on Saturday and since then I have had a hard time breathing. So I won't be helping him anymore.I also volunteer once a week for 3 hours at my son's school as a kindergarten tutor. I love it! I hope I won't have to give it up. Yesterday was my second session and it was a struggle because I had a hard time breathing. I work one on one with children in my son's class who don't know their ABC's or who are unable to write their names yet. Most of these kids are able to learn but just don't get the extra attention at home that is so needed. Also with my son's activities (field trips, karate, library, basketball) and our redecorating I think that I am running myself ragged, but I don't want to give up anything. So what's a girl to do?Take care,Venita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Hi Venita... My goodness you are really having quite a time of it, aren't you? Please let us know how things go with your appts. and with plans for surgery. You're in our hearts and prayers. Annette -----Original Message-----From: vsjsas3 Sent: Wednesday, October 23, 2002 10:01 AMTo: OurMyositis Subject: Venita--Checking InHello Everyone,I hope that you all are well. I miss you all and think about you daily. I haven't been on in a couple of weeks and have a lot of catching up to do.Tommorrow I will be taking tests to determine if I have a syndrome known as Postural Orthostatic Tachycardia Syndrome (POTS). The ENT doc is pretty sure that I have it. Just another thing to add to the bucket. I have been experiencing a lot of dizziness for a while and went to the ophthamologist to make sure it wasn't my eyes. My eyes were okay for the most part, so she referred me to the ENT doc. While I was there he (ENT) asked me what happened to the right side of my face. I told him the story. He asked me if I have pain in my eye and I told him yes. He told me that the way my face is pulling down on my eye I could possibly end of losing my cornea. So on November 6 I will be going to a plastic surgeon/ENT doc to see if I need reconstructive surgery on the right side of my face. I have been living with an asymmetrical face for 20 years, so I would never have plastic surgery unless it was threatening something like my sight.I am redecorating my living room and dining room. My husband and I reupholstered our sofa and chairs and are now painting or at least my husband is painting. I helped him out on Saturday and since then I have had a hard time breathing. So I won't be helping him anymore.I also volunteer once a week for 3 hours at my son's school as a kindergarten tutor. I love it! I hope I won't have to give it up. Yesterday was my second session and it was a struggle because I had a hard time breathing. I work one on one with children in my son's class who don't know their ABC's or who are unable to write their names yet. Most of these kids are able to learn but just don't get the extra attention at home that is so needed. Also with my son's activities (field trips, karate, library, basketball) and our redecorating I think that I am running myself ragged, but I don't want to give up anything. So what's a girl to do?Take care,Venita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Hi Venita... My goodness you are really having quite a time of it, aren't you? Please let us know how things go with your appts. and with plans for surgery. You're in our hearts and prayers. Annette -----Original Message-----From: vsjsas3 Sent: Wednesday, October 23, 2002 10:01 AMTo: OurMyositis Subject: Venita--Checking InHello Everyone,I hope that you all are well. I miss you all and think about you daily. I haven't been on in a couple of weeks and have a lot of catching up to do.Tommorrow I will be taking tests to determine if I have a syndrome known as Postural Orthostatic Tachycardia Syndrome (POTS). The ENT doc is pretty sure that I have it. Just another thing to add to the bucket. I have been experiencing a lot of dizziness for a while and went to the ophthamologist to make sure it wasn't my eyes. My eyes were okay for the most part, so she referred me to the ENT doc. While I was there he (ENT) asked me what happened to the right side of my face. I told him the story. He asked me if I have pain in my eye and I told him yes. He told me that the way my face is pulling down on my eye I could possibly end of losing my cornea. So on November 6 I will be going to a plastic surgeon/ENT doc to see if I need reconstructive surgery on the right side of my face. I have been living with an asymmetrical face for 20 years, so I would never have plastic surgery unless it was threatening something like my sight.I am redecorating my living room and dining room. My husband and I reupholstered our sofa and chairs and are now painting or at least my husband is painting. I helped him out on Saturday and since then I have had a hard time breathing. So I won't be helping him anymore.I also volunteer once a week for 3 hours at my son's school as a kindergarten tutor. I love it! I hope I won't have to give it up. Yesterday was my second session and it was a struggle because I had a hard time breathing. I work one on one with children in my son's class who don't know their ABC's or who are unable to write their names yet. Most of these kids are able to learn but just don't get the extra attention at home that is so needed. Also with my son's activities (field trips, karate, library, basketball) and our redecorating I think that I am running myself ragged, but I don't want to give up anything. So what's a girl to do?Take care,Venita Quote Link to comment Share on other sites More sharing options...
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