Guest guest Posted January 13, 2001 Report Share Posted January 13, 2001 Yes! That was her! I was unable to talk to her today due to a small fire outside my house today!! Everything is ok but I'll tell ya, in three weeks we move, and now today they threaten to ruin everything I own!! I guess that would have made moving easier though!! I was glad to see her on her computer. I am going to e-mail her this group in hopes she will join it as well! You all are better at support and info then her own doctors! Her name is Gwen Cutright and hopefully you all will hear from her shortly. Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2001 Report Share Posted January 14, 2001 Fern, Thanks for the kind advice. I talked with my mother this morning and she is not doing too well. I research a ton of things this week and am a bit overloaded right now. My mother is on Medicaid and Medicare. She has told me she can not go to University Hospital because it is not covered in her "plan". What a joke! A place that can maybe help her she can not use. I got several numbers for assistance devices for her and when I go up there on Tues. I plan on checking them all out. As well as to see if there is any way we can change her "plan" and get her seen by other doctors. She has no money and I am not that stable finacially to help her as much as I want to. Unfortunatly it seems she is at the mercy of her insurance. I do know she has the option to go to Kieser insurance. Does anyone have an opinion on them? I had them for a long time, when my daughter was born we had several problems with her heart and they as a group did not have anyone there to help with a new born with heart problems so they paid for her to go to Childrens Hospital and was seen for 3 years by the #1 pedeatric Cardiologist in Colorado. What I'm saying is if they do not have it then they will get it for you, is my opinion on it. I have heard a ton of people say they think Kieser is a bad insurance group. Can I hear everyones opinion on it? Like I said earlier when I go up on Tues. I would hope to have a lot of info to help her while I am there.Thanks for listening to me....again. Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2001 Report Share Posted January 14, 2001 Oh, thank you so very much!! I don't know how I could do this without all of you!! Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2001 Report Share Posted January 15, 2001 Hi Sandy..... Here is the site on Medicaid in your moms area. http://www.chcpf.state.co.us/elig/faq.html It explains some things but also lists phone numbers for you to call. It all depends on what programs she picked out..... on one of them all you need is a referral. Hope this helps you. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2001 Report Share Posted January 15, 2001 Sandy.... My opinion.... stay away from Kaiser. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2001 Report Share Posted January 15, 2001 Sandy, I would get a second opinion. Even patients with severe damage or who are in active disease can at least have range of motion done by a physical therapist to keep the joints and muscles mobile. Gentle hugs, Fern Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2001 Report Share Posted January 15, 2001 Sandy - Re: Kaiser-Permanente Ins. We used them for years as part of fully paid-for-life health insurance. Had a wonderful relationship. On one of my stays in the hospital - 1 month in ICU and another month in a private room, six surgeries and a 100 mile trip home by ambulance were all paid with costing us a cent. K-P sold out in the Dallas area so we are stuck with what's available to us with reduced benefits, reduced number of physicians to choose. We'd return to K-P in a New York minute if it were available in the Dallas area. Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2001 Report Share Posted January 15, 2001 Many Ins. companies are Nationwide but each state has different laws. We have Blue Cross/Blue Shield of GA. The BC/BS of NC that we used to have was very different. Different plans with different areas of coverage etc... Each insurance company is governed by Federal and then state laws and I'm afraid, doing what little they can get away with, depending upon their competition. Insurance is a business. Cari >From: JRKilpatrickMYO@... >Reply-To: OurMyositisegroups >To: OurMyositisegroups >Subject: Re: Sandy >Date: Mon, 15 Jan 2001 10:03:01 EST > >Sandy - Re: Kaiser-Permanente Ins. > >We used them for years as part of fully paid-for-life health insurance. Had >a >wonderful relationship. On one of my stays in the hospital - 1 month in >ICU >and another month in a private room, six surgeries and a 100 mile trip home >by ambulance were all paid with costing us a cent. > >K-P sold out in the Dallas area so we are stuck with what's available to us >with reduced benefits, reduced number of physicians to choose. We'd return >to K-P in a New York minute if it were available in the Dallas area. > >Jim _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2001 Report Share Posted January 15, 2001 Jules, Thank you so much for the advice! I have definitely heard more negative on Kaiser than positive! My experience with them was good, but mine was not as serious or as rare as my mothers IBM. Thank you for the offer of help, I will defiantly ask if and when I need it! I don't know a thing about this part of health care, or any part for that matter! I was planning on going to Denver to be with my Mom tomorrow for her MRI and to talk to the doctor myself however it is now snowing here pretty good so I will have to wait and see how it looks in the morning. Would be a terrible drive if it is still snowing or the roads are bad, it is 100 miles. So the trip may be postponed till later in the week. I will let you all know how it went as soon as I find out anything. She may have to schedule surgery on her back. Which brings me to another question if anyone has an opinion on it... If my Mother is as bad off as she is, is surgery going to be OK?? I'm afraid she will not walk at all if she is "down" too long. What do you think? She can hardly walk now as it is...any opinion on this would be helpful. Thanks again for listening to me ramble.... Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2001 Report Share Posted January 15, 2001 > HI Sandy, This is Jules and I am a RN so I know a little about ins. Usually Medi-care are pretty good about providing care with the proper documentation. That is the key word DOCUMENTATION . All the ins. co. are very picky about that. I'm know ins. fan. My own Ins. co. wouldn't approve IGg infusions for me quickly enough. I was on my way to meet our maker if you know what I mean. I had to go through the ER and was admitted in house. They were forced into approving and they paid for care already. As for Kaiser the inside scoop is it not very good for people with serious illnesses and most med. ins. won't approve medical care for pre-existing conditions. Some will approve after a year with them. I know many of us can't wait. If I were you I would find out exactly why they won't cover services there. If University Hospital can provide a special service your mom needs that she can't get anywhere else then many times the ins. co. can be muscled into approving care. You have to be pushy even obnoxious. Your mom might need someone to advocate for her. I am here for you if you need any inside info on our health care system. Good luck to you. You are both in my prayers. Jules. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2001 Report Share Posted January 16, 2001 Jules, I'm sorry, it is entirely possible it was me who never said. It is hard for me I guess, I know everything going on with her, so I may "assume" everyone does as well. And we all know what is said about assuming!! Even is I had said, it is never a problem to repeat myself. Not to worry. Please excuse my spelling with all this, some of these terms are tough for me to spell. However, here goes....My mother has a lot of pain in her hip and leg. They assume it is her "syatic" (no clue on spelling) nerve. Several years back she had this same problem, they said she had a disk that was pinching the nerve column. They operated on her then. It was a tough and painful surgery back then, and she was much much healthier then than she is now. They believe the problem is the same and she went in this morning for a MRI to confirm this. I think the biggest problem last time was the nurses had no clue what IBM was and got really impatient with her for not getting up and moving as fast as they thought she should. Not realizing that it on a good day was tough to walk, let alone less than 12 hours after back surgery. I think that goes with as I have heard here several times, it is hard to see your sick when you look normal. Anyhow, that was about 4 years ago. She had her MRI this morning and I was unable to be there with her due to one heck of a snow storm we had last night and today, the kids even stayed home from school from the snow. Anyway, I was not able to be there with her. We have not heard the results of the test as of yet. I will let you know them as soon as I hear something on that. She also has 2 bone spurs on her spine. Both are about 1 inch in length. I don't know what if anything they will do about that. We did get the results of my mothers blood work this morning. I don't know how to take the results of it right now. Her blood work is "normal" for her anyway. Her CPK count was at 800. That is about the way it has been for some time now. Which is bothering me. With her CPK count she should be about the same as she was a few months back. However, as I've said in the past, I believe that is a sign that something else is wrong with her. Does that make sense? I am a little scared right now. When my mother asked her normal doctor what she thought about this, and what she thought it could be she said she had no idea. If the doctor has no idea, what does this mean? Does it mean they will stop looking, or they just don't know what and will continue to look for the problem. I think I have said before, that she is really, really, bad. The other day, she was unable to open a regular cupboard. The next day, she went to eat and was unable to bring the fork to her mouth. She is loosing control of her muscles as well as strength. She can no longer get into and out of bed without help, she can no longer ever get off the toilet alone. She has a lift chair that lifts her to almost a standing position and she is unable to stand from that. I know that with this disease it is all supposed to happen eventually, but in November she was able to do all of this with little problems. Before, she used a scooter to get around outside the house, she has a van for it so she could be somewhat independent. She was able to walk around the house OK, slowly, but OK. no major problems, now she is almost bedridden, all in 2 months. This is what is scaring me, she is going down so quickly and it is not "supposed" to be this way. Any ideas? Well, I've done it again, I'm sorry. Any more questions, feel free to ask, you all are they only people I have to talk to about this that understand. Her blood work coming back normal is what I think bugs me the most. Someone asked me if she could have DM and I don't think so, she has had no skin problems what so ever. My grandmother, the one with Polymyositis, has never gone down like this as well. My mother is on all the typical meds. Preg, etc. nothing helps. Her doctor told her in December she should stop all the meds. because they were not helping. . Sorry to always make these so long. Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2001 Report Share Posted January 16, 2001 One more note on this. My mother tends to sleep all the time, I was wondering if anyone else has been threw this. Could it be depression or the meds? I call her several times a day to check up on her and in the last two weeks I don't think there has been a time I've called when I did not wake her up. Is this normal? Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2001 Report Share Posted January 16, 2001 Hi Sandy, What symptoms is your Mom having and why does she need back surgery? I must have missed it when you told us about your Mom. Sorry to ask you to repeat but I might have advise to give with some info.Hang in there. Jules.--- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2001 Report Share Posted January 16, 2001 -Oh Sandy, Your letter brought tears to my eyes. I'm so sorry for you and the pain your Mother must endure. I think what is worse than the disease is the not knowing and vagueness of many of the trx. Listening to many of the people on this web site I have learned there are many different trx plans. Some to my constantly analytical mind do not make sense. But, the main thing stays constant MAKE SURE YOU AND YOUR DOCTOR GET ON and that you feel deep down that he or she is doing the best job for you. You mentioned your mom's MD was uncertain what to do. There is nothing wrong with requesting a referral to someone else. I did that very thing when my MD of 10 years didn't know what to do. I wasn't about to check out to save anyone's ego. Talk around and find the MD you think can help. Some times one will take you and make payment arrangements with you if they are not a provider. It doesn't cost anything to ask. The doctor I worked with professionally told me I was idealistic and to get with the real world. This was 10 years into my career. Some times asking a MD or nurse the unexspected moves them to do what many of them got into this career in the first place; to touch another in a profound way. How much deeper can one go but to have knowledge and use it to enrich another's life sometimes without monitary comp. You think this is asking too much? Keep asking some one will help. The Lord always finds a way if it is meant to be. I know CPKs can be chronically high but 800 seems high over the time period. As far as surgery as long as they can support your mom's vital functions while she recovers she should be alright. About the nurses reactions it always makes me mad when I hear that other nurses aren't patient or compassionate with patients. That burns me!! YOU or yourMom need to right off tell the person what is wrong with you so they understand,however all unappropriate comments or behavior needs to be reported to their supervisor. YOU CAN TELL THEM A NURSE TOLD YOU SO.Unfortunately some end up in professions they should never be in. But take heart help IS OUT THERE. Regarding meds, I hope she was weaned off and not taken off directly. I have been as sick as your mom is now three times. It's no fun and the pain is horrible but I'm still here. Like I said it's not over til it's over. Take care. I hope I helped and not hindered. Jules.-- In OurMyositisegroups, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2001 Report Share Posted January 17, 2001 Sandy - When Kaiser-Permanente spent over $800,000 on my six surgeries, in ICU for a month, In a private room for a month, then 10 weeks at home with aides, and using 8 physicians outside the K-P list of physicians for their expertise - and I didn't have to pay a cent; I can't find fault with a HMO that does things like that to help its members. Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2001 Report Share Posted January 17, 2001 I know that was exhaused and slept a lot!!! Hugs, Cari >From: CJHAIN@... >Reply-To: OurMyositisegroups >To: OurMyositisegroups >Subject: Re: Re: Sandy >Date: Tue, 16 Jan 2001 20:48:31 EST > >One more note on this. My mother tends to sleep all the time, I was >wondering >if anyone else has been threw this. Could it be depression or the meds? I >call her several times a day to check up on her and in the last two weeks I >don't think there has been a time I've called when I did not wake her up. >Is >this normal? >Sandy _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2001 Report Share Posted January 17, 2001 -- Sandy, I belong to Kaiser in CA, and have had very good results. The main thing to do with them is to do your research and ask lots of questions. I work primarily with senior citizens and there are just as many horror stories about every other HMO out there. I hope your mother is feeling better. Like they say, " It's too bad youth is wasted on the young " . Bo - In OurMyositisegroups, CJHAIN@a... wrote: > Fern, > Thanks for the kind advice. I talked with my mother this morning and she is > not doing too well. I research a ton of things this week and am a bit > overloaded right now. My mother is on Medicaid and Medicare. She has told me > she can not go to University Hospital because it is not covered in her > " plan " . What a joke! A place that can maybe help her she can not use. > I got several numbers for assistance devices for her and when I go up there > on Tues. I plan on checking them all out. As well as to see if there is any > way we can change her " plan " and get her seen by other doctors. She has no > money and I am not that stable finacially to help her as much as I want to. > Unfortunatly it seems she is at the mercy of her insurance. I do know she has > the option to go to Kieser insurance. Does anyone have an opinion on them? I > had them for a long time, when my daughter was born we had several problems > with her heart and they as a group did not have anyone there to help with a > new born with heart problems so they paid for her to go to Childrens Hospital > and was seen for 3 years by the #1 pedeatric Cardiologist in Colorado. What > I'm saying is if they do not have it then they will get it for you, is my > opinion on it. I have heard a ton of people say they think Kieser is a bad > insurance group. Can I hear everyones opinion on it? > Like I said earlier when I go up on Tues. I would hope to have a lot of info > to help her while I am there.Thanks for listening to me....again. > Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2001 Report Share Posted January 19, 2001 Sandy, I's so sorry that your mother is so sick. I've been in her position three times in the last ten years. Myositis is not my only dx. Sometimes more than one autoimmune disease will flair up at the same time. That sounds like it may be happening to your Mom. I have been so weak that I couldn't lift a fork, sit up, move my legs in the bed, or even hold my head up when the nurses tried to shift me in the bed. My daughters were my best advocates, esp. my oldest. She moved to Mobile to help me at the worst of times and wouldn't leave my side while I was hospitalized. My last really bad time, the doctors did a plasma exchange. I can truly say that this procedure saved my life. I will be having another plasma exchange in February. I've been in a flair for the past several months and my rheumatologist doesn't want me to get as bad as before. This procedure is also called a plasma pheoresis. The antibodies are carried in the plasma and when you have an autoimmune disease, the bad antibodies are there. In this procedure your blood is removed and put through a machine, similar to dialysis, except your plasma is thrown away and you are given fresh plasma from donors This is an extreme procedure but I can truly say it has saved my life. It also helped the myositis as well as my Behcet's and MCTD. My prayers are with you as well as with your Mother. Believe me when I tell you, NO ONE ON THIS EARTH can do for her what you do by being there and caring. God bless you.... Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2001 Report Share Posted January 19, 2001 Sue, Thank you so much for your kind words. I sure hope you are feeling OK. I'm sorry to hear you are in a flare right now, I hope it gets better soon. I was wondering what it was that you have. Your e-mail didn't say what kind of myositis it is that you have. There has been no more news as to my mother as of yet, still waiting for the MRI results, she will no next Thursday I believe. I am glad to here your daughter was a big help to you. I too hope to be there for my mother, I'm the youngest in my family however my mother and I have always been super close. I am also the only one in my family able to not work and be with her due to the fact that I do have a wonderful husband. I hope to be moving to Denver within the next few days. She needs my help and my car isn't doing as well as it should so driving up there is taking its toll on it. I learned a lot from my husband and his mother. She past away a few years ago and my husband was unable to spend a lot of time with her. His sister on the other hand spent every free moment it seemed with her. When she passed away everyone had a real hard time with it except for the sister who spent the time with her. She was sad of coarse, but she had no regrets at all where her mother was concerned. I want that to be me. I sure hope my mother stays with us for a long time, but when she is gone, I want to know in my heart that I did everything I could and loved her as much as I could for her. I know she would do the same for me. And she has. I have been a bit worried about almost everyone in the group. The e-mails have slowed way down, and I am hoping it is because you all are feeling so well that your off playing and have not the time for e-mails!!! For the rest of you, please believe me that when I go to bed at night there is someone out there praying for all of you and your health. Please take care of yourselves, and God bless, Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2001 Report Share Posted January 27, 2001 Sandy, We all ask the "Why me?" question at times. There is nothing wrong with feeling down or even overwhelmed with having to cope with chronic illness. However, most of the people I talk to who have been dealing with an illness for a long time tell me that they are able to see the good that has come out of it. In most cases it makes us better people. We are more compassionate and understanding of others, we learn how strong we can really be, we learn much more about ourselves and our higher power, and we learn that there is usually a purpose that appears to us after a while. Gentle hugs, Fern Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2001 Report Share Posted January 28, 2001 Hey Guys, I really appreciated that response, Fern. I don't know why God has allowed me to have MD, but I know He has a reason. My family are all devout Christians and are always telling me my faith isn't strong if I accept this. I read through the book of Job the other day, and never once did Job ask God to take away the "torture". He only asked that God would give him the strength to stand it. Of course, Job was much better off in the long-run, and somehow, I know he can make our trials blessings. If we don't look at it that way, we could drown in a sea of self pity. Please don't get me wrong, we are all entitled to a pity party now and then, I think we have earned it.~~~Sherry >From: "Starflower" >Reply-To: OurMyositis >To: >Subject: Re: Sandy >Date: Sat, 27 Jan 2001 00:44:47 -0800 > >Sandy, > >We all ask the "Why me?" question at times. There is nothing wrong with feeling down or even overwhelmed with having to cope with chronic illness. However, most of the people I talk to who have been dealing with an illness for a long time tell me that they are able to see the good that has come out of it. In most cases it makes us better people. We are more compassionate and understanding of others, we learn how strong we can really be, we learn much more about ourselves and our higher power, and we learn that there is usually a purpose that appears to us after a while. > >Gentle hugs, >Fern Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2001 Report Share Posted January 28, 2001 Sherry .... You hit it right on the head. After I got out of the hospital I also read Job.... after that I felt very lucky and learned that this is not only a test for me but that I have been given a chance to stop and smell the roses. Even though I get sick and weak at times, have to take all the pills, I still look at this disease as a gift. Pity partys are just a way to get you through all of this and to get the load off your shoulders so your family won't suffer also. I also believe that even though all of us are somewhat different .... the good Lord has brought us all together so we might help one another. Hope you're having a great day and good to hear from you. Please keep us posted as to what you will be doing next. Take care, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2001 Report Share Posted January 28, 2001 Sherry, I too believe that God has allowed me to be ill for a reason and it may not be one reason, but many. I am able to be here for my children and we took custody of my step-son two years ago and it has made a major difference in his life. He was headed for failure in school and no future living with his mother. He tells us that we have changed his life. He is now an A-B student and very excited about college. He is trying to get into a local college here in our city so he can be close to us. He says he isn't ready to give up the family life that has helped him so much the last two years. He definitely didn't have that with his mom. I too am a devout Christian and couldn't have made it this far if it weren't for my faith. I do, however, get very angry with Christians who say that we are sick because we don't have enough faith in God to heal us. Who says that God's answers to our prayers are always what we want to here. I believe that he allows us to go through certain things to learn and grow or to be able to touch someone else. And like you, I believe a little self pity can be very cleansing as long as we don't stay in that frame of mind all the time. We all need some time to grieve and to nurture ourselves. Who says we have to be taking care of others all of the time. We cannot be any good to others if we don't take care of ourselves first. Gentle hugs, Fern Quote Link to comment Share on other sites More sharing options...
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