Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 Hi Squeek, Gosh I'm so glad that you are doing so well on the Remicade. Bet it feels wonderful to start to feel good again. My RP is really behaving itself. My family just keeps passing around these darn viruses and they have had me down. Hopefully when spring finally gets here for good we will all be feeling wonderful and out planting my garden. Yep, still reading. In fact, I just finished a book from an author you suggested and if I had any brain left at all I would remember his name and the name of the book. LOL I really enjoyed it anyway. LOL Heading for the used book store tomorrow. YIPPEE!! Hope you had a nice weekend and have even a better week ahead. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2002 Report Share Posted April 2, 2002 Hi Squeek It's only been about 2 1/2 months total, with 3 weeks now at 17 mg. I know that's still too early, but we can hope, right? Take care and thanks for your response!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2002 Report Share Posted April 2, 2002 Squeek Sorry to hear that you are having a rough time of it again. Dog gone it anyway. I know how frustrating this all can be. Know I am here for you anytime. Sending good thoughts and prayers your way! lots of love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2002 Report Share Posted April 3, 2002 Thank you Squeek, I keep telling God, please don't put anymore on me. But somehow it just keeps happening. I know we all have good days and bad, maybe one day they will all be good. You take care of yourself. Praying you feel great! Love Lu Lu, hang in there! I'm praying for you too and hope you are better soon. You have just had way too much lately. Love you all, squeek Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Squeek, Sorry I didn't get back to you. I have been sort of down lately. So tired and don't know why. Just love having a suppressed immune system!LOL My sister isn't doing to well. She needs to see the surgeon again. Her legs are hurting her for the third time now. Surgeon told her to call him as soon as she had pain again or he might not be able to save her legs a third time around. Her PCP told her not to call him because the insurance. Has to be Pre-approved or it wont pay. She was really in the dumps yesterday. Please keep her in your prayers! Lots of love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2002 Report Share Posted April 4, 2002 Glenda, Sorry to hear about your sister. I would think either the PCP or Surgeon could contact the insurance company so she can be treated right away. What does the PCP propose to do if she can't see the surgeon? Your sister is in my prayers. Hugs, Sandy My sister isn't doing to well. She needs to see the surgeon again. Her legs are hurting her for the third time now. Surgeon told her to call him as soon as she had pain again or he might not be able to save her legs a third time around. Her PCP told her not to call him because the insurance. Has to be Pre-approved or it wont pay. She was really in the dumps yesterday. Please keep her in your prayers! Lots of love Glenda 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 April 5, 2002 Report Share Posted April 5, 2002 Hi Glenda Saw your post and wanted to ask you something and also make some comments regarding your PCP. What exactly is wrong with your sister's legs. I take it she has an HMO. Now here's what my doctors do and I have an HMO. Sure the PCP needs to get the referral from the insurance company, but that surgeon she saw can call her PCP requesting he get the approval. Now if the PCP refuses then this is what I would suggest she do. Since it means the possible loss of her legs, I would first contact her insurance provider. Then I would turn around and contact the Insurance commissioner for her state as well. If this is a threat of life and/or body functions..I'm sure this means her legs then this PCP " must " by law push to get the referral to the Surgeon. The Surgeon then has the responsiblity of getting the referal for surgery and if the insturance company has a problem with that then I'm more than sure the State Insurance Commissioner will take care of it. No one, including a doctor or an HMO has the right to put anyone at that type of risk. Not sure Glenda if this is helpful or not. I have an HMO and I'll be go to hell if they or any doctor would pull that or tell me that. If I can find out any other information for you let me know. Hugs Sharyn > Squeek, > Sorry I didn't get back to you. I have been sort of down lately. So tired and don't know why. Just love having a suppressed immune system!LOL > > My sister isn't doing to well. She needs to see the surgeon again. Her legs are hurting her for the third time now. Surgeon told her to call him as soon as she had pain again or he might not be able to save her legs a third time around. Her PCP told her not to call him because the insurance. Has to be Pre-approved or it wont pay. She was really in the dumps yesterday. Please keep her in your prayers! > Lots of love > Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2002 Report Share Posted April 7, 2002 In a message dated 4/7/02 4:54:45 PM Pacific Daylight Time, sisterslk@... writes: << It was good to see my mother in law, but wish I could just " beam " myself to her house! >> Oh Squeek, I feel the same way. It is a 4 hour trip to my in laws one way and it just about kills me. I miss them so much, but just can't do the drive in one day. My sister is my treasure too. She is the only one I have and I would be lost without her. I am planning on going to her house either tomorrow or Tues. My throat is really sore tonight, so hope it is gone by tomorrow. Don't want her getting something else. She posted me tonight and told me her front porch is calling my name. LOL She has a wonderful old house with a BIG front porch over looking a pond and is surrounded all the way around by mountains. She is in a valley. They have 5 acres and it is so beautiful this time of year. When I go see her all I do is sit on her porch, (Of course I've claimed it as mine) LOL A real relaxing place to be. Yes I went to the street fair and spent far too much on odds and ends. LOL It was a great day. Rich, and went with me and we had a great day. Everyone got sun burned except me. I KNOW to always put on the sunscreen. LOL Today was a real lazy day for me. Think the time change did me in. LOL Now I have my second wind. I am heading upstairs to read. Will talk to you soon. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2002 Report Share Posted April 8, 2002 In a message dated 4/8/02 2:36:30 PM Pacific Daylight Time, sisterslk@... writes: << How is your throat today? Better, I hope. >> Squeek, The dr. put me on antibiotics just to be safe. I had a fever and cough so I want to knock this thing right out. I'm the baby of the family. Just have one sister and she is 9 years older than me and acts 10 years younger. LOL Her place is wonderful but i'm glad she's the one who has to do the work and I can just enjoy it. lOL Got s results back today and there area quite a few pre cancersous cells. They are calling her back today to schedule a Colopscopy. She is scared and I am worried. had the same thing done and she is okay for now. So i will just keep praying and i'm sure things will turn out okay. YOu go rest, sounds like you have had one busy day. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2002 Report Share Posted April 8, 2002 Dear Sandy, I don't know exactly what is going on with your sight but if it involves a lack of oxygen or circulation to the optic nerve, there is something that may help. The doctor I used to work for had back surgery and to make a long story short he woke up blind. They felt he had a lack of circulation, and therefore oxygen to his optic nerve which caused blindness. They took him to a hospital that had a hyperbaric chamber and after his first treatment he could see shadows. After more treatments he can see only out of the innermost corner of his right eye. It wasn't enough to restore his vision totally but at least he doesn't see pitch black. He's still legally blind and is no longer working at this point because he recently suffered a massive heart attack. I don't know if this is any help but I thought I'd mention it. So sorry to hear about your sight problems and hope and pray things improve for you. Sue Park Re: Squeek , My sight is the same. Saw a new eye doc yesterday and he didn't tell me anymore than the last one. I was very dissappointed. The doc told me I did not need a Temporal biopsy. He said I was to young to have Temporal Arteritis. My husband asked him why I have so much pain in my eye & temple and the Doc said people with RP have lots of aches and pain. I see my Rheumy next week so I'll see what he wants to do. SandySandy, thanks for all you do. I'm sure that all will be fine. How is your sight? Have they increased your pred any more? YOu know I worry about you. Glenda keeps trying to do my worrying for me, but I just can't seem to give it up. LOL You know you are in my thoughts and prayershugsDISCLAIMER!!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 April 8, 2002 Report Share Posted April 8, 2002 In a message dated 4/8/02 5:46:16 PM Pacific Daylight Time, biglou5685@... writes: << Sorry it wasn't better news. Praying everything will go okay for . Hugs, Sandy >> Sandy, thanks for all you do. I'm sure that all will be fine. How is your sight? Have they increased your pred any more? YOu know I worry about you. Glenda keeps trying to do my worrying for me, but I just can't seem to give it up. LOL You know you are in my thoughts and prayers hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2002 Report Share Posted April 8, 2002 , Sorry it wasn't better news. Praying everything will go okay for . Hugs, Sandy Got s results back today and there area quite a few pre cancersous cells. They are calling her back today to schedule a Colopscopy. She is scared and I am worried. had the same thing done and she is okay for now. So i will just keep praying and i'm sure things will turn out okay. YOu go rest, sounds like you have had one busy day. hugsDISCLAIMER!!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 April 9, 2002 Report Share Posted April 9, 2002 , My sight is the same. Saw a new eye doc yesterday and he didn't tell me anymore than the last one. I was very dissappointed. The doc told me I did not need a Temporal biopsy. He said I was to young to have Temporal Arteritis. My husband asked him why I have so much pain in my eye & temple and the Doc said people with RP have lots of aches and pain. I see my Rheumy next week so I'll see what he wants to do. SandySandy, thanks for all you do. I'm sure that all will be fine. How is your sight? Have they increased your pred any more? YOu know I worry about you. Glenda keeps trying to do my worrying for me, but I just can't seem to give it up. LOL You know you are in my thoughts and prayershugsDISCLAIMER!!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 April 19, 2002 Report Share Posted April 19, 2002 Squeek, I haven't found a PCP. Amazingly enough they all have waiting lists for new patients. What happens to people who don't have a dr.? I know I have got to get a better one or this one might just do me in.LOL I am not going give up. I have got to find a dr. who cares or at least knows or wants to know about RP. You would think as big as an area that we live in there would be a dr. or two that knows about RP. Lots of love Glenda Quote Link to comment Share on other sites More sharing options...
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