Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 , Did you check out the Helmet/Band Database in the Database section of the group already? When you open the Helmet/Band Database, you can type in " Missouri " in the search field in the upper right corner. I am not familiar with the geography in Missouri, but when I checked the Database, I saw DOC, Star, and Hanger Cranial Band, all active bands available in your state. Are you willing to have some drive time? Perhaps you can research these options while you're waiting around for pre-certification. By the way, I hope they get their act together soon and you hear something!!! I noticed that the PPO helmet is in your area; is that the passive helmet they are recommending? In the Database entry for that location, there is a website you can go to to read about it if you haven't already been there. Plus, I think there might be a picture of the PPO helmet in the FILES/HELMET AND BAND BRAND PHOTOS folder. Would you let us know if you hear something? Take care, Christie (Mom to Repo'd Remy) --- In Plagiocephaly , " " <andileigh@h...> wrote: > We are still waiting for pre-certification from the insurance company > to see what band/helmet they will pay for (that is, if they'll pay for > it, apparently they do sometimes). Our Ped. plastic surgeon's office > was supposed to be sending the info out on Mon. and the insurance is > saying that they still haven't received anything. We're in the same > city so the mail should only take a day or two. I can't get the > plastic surgeon's nurse to call me back either. I'm just feeling so > frustrated! Connor will be 6 mo. next Thurs. and I feel like we're > losing precious time, especially since they are recommending a passive > helmet. I've tried to check out if there are any active band options > near us, but haven't been very successful in finding the info (no CT > or Orthoamerica locations close). I can't ever get anyone on the > phone who knows what they're talking about. Ugh! > > > Connor (10/15/03 - tort/plagio) > St. Louis, MO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2004 Report Share Posted April 10, 2004 - I'm also in St.Louis, (I think we've talked before through the group) I was wonderig what Plastic surgeon you are going to - we haven't been to see ours yet, (April 26) but I always seem to be able to get them on the phone. His name is Dr. Marsh at St. 's. I wish you lots of luck! - St. Louis --- <andileigh@...> wrote: > We are still waiting for pre-certification from the > insurance company > to see what band/helmet they will pay for (that is, > if they'll pay for > it, apparently they do sometimes). Our Ped. plastic > surgeon's office > was supposed to be sending the info out on Mon. and > the insurance is > saying that they still haven't received anything. > We're in the same > city so the mail should only take a day or two. I > can't get the > plastic surgeon's nurse to call me back either. I'm > just feeling so > frustrated! Connor will be 6 mo. next Thurs. and I > feel like we're > losing precious time, especially since they are > recommending a passive > helmet. I've tried to check out if there are any > active band options > near us, but haven't been very successful in finding > the info (no CT > or Orthoamerica locations close). I can't ever get > anyone on the > phone who knows what they're talking about. Ugh! > > > Connor (10/15/03 - tort/plagio) > St. Louis, MO > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2004 Report Share Posted April 10, 2004 sorry you are feeling so frustrated. Here in the Kansas City area we have 2 Starband locations nearby and also a Docband location. But that would be about a 3 1/2 to 4 hour drive. I know people who have used all of these locations. They are all experienced orthos. Good luck with your insurance and please keep us posted. Angie and Jenna (STARband grad Missouri) > We are still waiting for pre-certification from the insurance company > to see what band/helmet they will pay for (that is, if they'll pay for > it, apparently they do sometimes). Our Ped. plastic surgeon's office > was supposed to be sending the info out on Mon. and the insurance is > saying that they still haven't received anything. We're in the same > city so the mail should only take a day or two. I can't get the > plastic surgeon's nurse to call me back either. I'm just feeling so > frustrated! Connor will be 6 mo. next Thurs. and I feel like we're > losing precious time, especially since they are recommending a passive > helmet. I've tried to check out if there are any active band options > near us, but haven't been very successful in finding the info (no CT > or Orthoamerica locations close). I can't ever get anyone on the > phone who knows what they're talking about. Ugh! > > > Connor (10/15/03 - tort/plagio) > St. Louis, MO > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2004 Report Share Posted April 10, 2004 , Just to let you know, a baby's head growth slows down significantly when they reach 6 months old. If you can, you really should try and get your baby into any active band. Here are some places in MO that do helmets or bands. Missouri Orthosis Helmet Molding* (PPO Helmet) Precision Prosthetics and Orthotics, 100 N. Euclid St. Louis, MO 63108 Barbara Zeigler (314) 361-7800, info@... www.ppoinc.com ------------------------------------------------------------- Missouri Hanger Cranial Band* Hanger Prosthetics and Orthotics One Hospital Drive Room MC-15, DC 084.50 Columbia, MO 65212 Bates 573-882-6101 www.hanger.com --------------------------------------------------------- Missouri O & P Cranial Molding* Orthotic & Prosthetic Lab., Inc., 748 Marshall Ave.; Webster Groves, MO 63119 Kent Butzin (314) 968- 8555, (314) 567-7775 ------------------------------------------------------------- Missouri DOCband* Rehab Designs of America, Rockhill Medical Plaza North, 6650 Troost Suite 100; Kansas City, MO 64131 Bob Kuenzi, Jan Wollard (816) 523-1333 www.cranialtech.com --------------------------------------------------------------- Missouri Starband* Hanger Prosthetics and Orthotics, 3010 291 Highway Suite J; Independence Missouri 64057 ette Hamblin 816- 350-8200 www.hanger.com, www.orthomerica ---------------------------------------------------------- > We are still waiting for pre-certification from the insurance company > to see what band/helmet they will pay for (that is, if they'll pay for > it, apparently they do sometimes). Our Ped. plastic surgeon's office > was supposed to be sending the info out on Mon. and the insurance is > saying that they still haven't received anything. We're in the same > city so the mail should only take a day or two. I can't get the > plastic surgeon's nurse to call me back either. I'm just feeling so > frustrated! Connor will be 6 mo. next Thurs. and I feel like we're > losing precious time, especially since they are recommending a passive > helmet. I've tried to check out if there are any active band options > near us, but haven't been very successful in finding the info (no CT > or Orthoamerica locations close). I can't ever get anyone on the > phone who knows what they're talking about. Ugh! > > > Connor (10/15/03 - tort/plagio) > St. Louis, MO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2004 Report Share Posted April 10, 2004 ANdrea, I'd start calling your ins co daily to get them jump started! I'm glad there are other options in your area in our database. I'd go for the active band too if you have the choice. Are any of those other locations close enough for you to make the drive? I hope this gets cleared up for you soon! , mom to Hannah, DOCband #3 3/30 Cape Cod, Ma --- In Plagiocephaly , " " <andileigh@h...> wrote: > We are still waiting for pre-certification from the insurance company > to see what band/helmet they will pay for (that is, if they'll pay for > it, apparently they do sometimes). Our Ped. plastic surgeon's office > was supposed to be sending the info out on Mon. and the insurance is > saying that they still haven't received anything. We're in the same > city so the mail should only take a day or two. I can't get the > plastic surgeon's nurse to call me back either. I'm just feeling so > frustrated! Connor will be 6 mo. next Thurs. and I feel like we're > losing precious time, especially since they are recommending a passive > helmet. I've tried to check out if there are any active band options > near us, but haven't been very successful in finding the info (no CT > or Orthoamerica locations close). I can't ever get anyone on the > phone who knows what they're talking about. Ugh! > > > Connor (10/15/03 - tort/plagio) > St. Louis, MO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2008 Report Share Posted April 29, 2008 Hi Group, I don't know where to start. I'm just feeling full of frustration. I feel so old, and I'm 45. Maybe that is old. I saw my rheumy this weekend (he's doing wknd hours as he is leaving and wants to make sure we all get our visits in and our needs met, he's very special). Anyway, he noticed I was walking funny , told him my hips were hurting. Naturally he had to poke them. I nearly jumped off the table before he could do his full poke. Both hips are now in total, extremely painful active bursitis. I can't sit, I can't stand, I can't sleep, I move so much I " m exhausted. I attempted work today which was dumb, lasted 4 hours because sitting caused the pain to go down my thighs to my legs. Can't take the pain meds at work. On Thursday I'm scheduled to get shots in each hip, and probably another knuckle shot as well. I have also managed to get a trigger finger that snaps and sticks, which oddly I find amusing. It hurts but mostly feels uncomfortable. It's like a gumby finger. Anyone else have this experience? I've also taken my 3rd Enbrel. Very little side effects with number 3, so that's great, but i did manage to get a lovely red, swollen itchy patch at the injection site. I picked my other thigh, but i'm not worried about it, no biggie. Now that I'm home for a few days and pondering things, I'm wondering how much longer can I work in a fast paced job where i'm up and down all day and on the computer. My hands don't look very RA-ish, but I feel them weakening. I can't open my gas cap on the car anymore. Usually someone helps but I've become very creative if I have to do it alone So I wonder about disability, I have a nurse thru my insurance company, also comes with a case manager today. we spoke about OT and PT, a possible raised toilet seat and a handicapped placard. Have I lost my mind? Has this really become my reality? My future? Sorry guys, just had to write, I " m getting worried, and I don't know what to do if anything at all! Maybe I'm just worrying too much. I worry about missing work even though I have a note, and work with nurses, they've been so good to me, and I do my job well, but sometimes the pressure of not letting down the team gets to me and I drag myself in when I have no business being there. I'm also having cognitive issues , losing sense of direction, focus like a 3 week old kitten, fatigue right after doing something. I'm seeing a neurologist June 16th. I'd love to hear from anyone else going thru this, or who has gone thru this, etc. Sorry for writing a novella....and thanks for listening! Heidi and her spastic trigger pinky Massachusetts To those who believe, no explanation is necessary; to those who dont, no explanation is possible **************Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (http://autos.aol.com/used?NCID=aolcmp00300000002851) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 Hi Barbara, Thank you for your support, it was very comforting! I live in Needham. I've been on the phone with various people and found out there are more supports out there than I had ever imagined. I don't need to panic as much. for now. LOL Heidi To those who believe, no explanation is necessary; to those who dont, no explanation is possible In a message dated 4/30/2008 3:19:49 P.M. Eastern Daylight Time, bcreedon@... writes: Hi Heidi: Sorry to hear you are feeling poorly, and I hope you feel much better soon. I think once you get those shots in your hip, it will start to make them feel so much better, and ease your pain. Those shots do work wonders.. You are not old, I wish I was 45 again!!! I guess at some point, all of us with RA, have to come to terms with it. I too, am a worrier! I decided I would do what I could to help me feel better, and manage this awful disease. I did get a high-rise toilet seat, and that was a good thing I did for myself. It makes life better, no more killing your knee's or my hips, trying to get up. You will see for yourself what a diff. it makes. You will be glad you got one. Getting a disabled hang-tag for your car would also help. My rheumy. had me get one, and now I am glad. My feet are the worst, so now I can park close to the store, etc. I used to be a walker everyday, 3-4 miles, no matter what the weather was. Not so now. Boy, do I miss it! I guess making concessions is the key to having a better life when things are bad. I am trying to beat this disease, one day at a time. I am also trying not to worry so much about everthing! Maybe you should give the OT and PT a try. It has helped me many times. It must be so hard to work, feeling as you do. I hope you will be pain free soon, and remember, everyone here cares how you feel, and hopes you feel better soon. Where do you live in Mass.? Hugs, Barbara Sent: Tuesday, April 29, 2008 8:15:20 PM Subject: [ ] Frustrated! Hi Group, I don't know where to start. I'm just feeling full of frustration. I feel so old, and I'm 45. Maybe that is old. I saw my rheumy this weekend (he's doing wknd hours as he is leaving and wants to make sure we all get our visits in and our needs met, he's very special). Anyway, he noticed I was walking funny , told him my hips were hurting. Naturally he had to poke them. I nearly jumped off the table before he could do his full poke. Both hips are now in total, extremely painful active bursitis. I can't sit, I can't stand, I can't sleep, I move so much I " m exhausted. I attempted work today which was dumb, lasted 4 hours because sitting caused the pain to go down my thighs to my legs. Can't take the pain meds at work. On Thursday I'm scheduled to get shots in each hip, and probably another knuckle shot as well. I have also managed to get a trigger finger that snaps and sticks, which oddly I find amusing. It hurts but mostly feels uncomfortable. It's like a gumby finger. Anyone else have this experience? I've also taken my 3rd Enbrel. Very little side effects with number 3, so that's great, but i did manage to get a lovely red, swollen itchy patch at the injection site. I picked my other thigh, but i'm not worried about it, no biggie. Now that I'm home for a few days and pondering things, I'm wondering how much longer can I work in a fast paced job where i'm up and down all day and on the computer. My hands don't look very RA-ish, but I feel them weakening. I can't open my gas cap on the car anymore. Usually someone helps but I've become very creative if I have to do it alone So I wonder about disability, I have a nurse thru my insurance company, also comes with a case manager today. we spoke about OT and PT, a possible raised toilet seat and a handicapped placard. Have I lost my mind? Has this really become my reality? My future? Sorry guys, just had to write, I " m getting worried, and I don't know what to do if anything at all! Maybe I'm just worrying too much. I worry about missing work even though I have a note, and work with nurses, they've been so good to me, and I do my job well, but sometimes the pressure of not letting down the team gets to me and I drag myself in when I have no business being there. I'm also having cognitive issues , losing sense of direction, focus like a 3 week old kitten, fatigue right after doing something. I'm seeing a neurologist June 16th. I'd love to hear from anyone else going thru this, or who has gone thru this, etc. Sorry for writing a novella....and thanks for listening! Heidi and her spastic trigger pinky Massachusetts To those who believe, no explanation is necessary; to those who dont, no explanation is possible ************ **Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (_http://autos._ (http://autos./) aol.com/used? NCID=aolcmp00300 000002851) [Non-text portions of this message have been removed] __________________________________________________________ Be a better friend, newshound, and know-it-all with Mobile. Try it now. _http://mobile.http://mobhttp://mobile.<Whttp://mobile.<Wht_ (http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ) [Non-text portions of this message have been removed] **************Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (http://autos.aol.com/used?NCID=aolcmp00300000002851) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 Hi Heidi: Sorry to hear you are feeling poorly, and I hope you feel much better soon. I think once you get those shots in your hip, it will start to make them feel so much better, and ease your pain. Those shots do work wonders.. You are not old, I wish I was 45 again!!! I guess at some point, all of us with RA, have to come to terms with it. I too, am a worrier! I decided I would do what I could to help me feel better, and manage this awful disease. I did get a high-rise toilet seat, and that was a good thing I did for myself. It makes life better, no more killing your knee's or my hips, trying to get up. You will see for yourself what a diff. it makes. You will be glad you got one. Getting a disabled hang-tag for your car would also help. My rheumy. had me get one, and now I am glad. My feet are the worst, so now I can park close to the store, etc. I used to be a walker everyday, 3-4 miles, no matter what the weather was. Not so now. Boy, do I miss it! I guess making concessions is the key to having a better life when things are bad. I am trying to beat this disease, one day at a time. I am also trying not to worry so much about everthing! Maybe you should give the OT and PT a try. It has helped me many times.  It must be so hard to work, feeling as you do. I hope you will be pain free soon, and remember, everyone here cares how you feel, and hopes you feel better soon. Where do you live in Mass.? Hugs, Barbara                                                                                Sent: Tuesday, April 29, 2008 8:15:20 PM Subject: [ ] Frustrated! Hi Group, I don't know where to start. I'm just feeling full of frustration. I feel so old, and I'm 45. Maybe that is old. I saw my rheumy this weekend (he's doing wknd hours as he is leaving and wants to make sure we all get our visits in and our needs met, he's very special). Anyway, he noticed I was walking funny , told him my hips were hurting. Naturally he had to poke them. I nearly jumped off the table before he could do his full poke. Both hips are now in total, extremely painful active bursitis. I can't sit, I can't stand, I can't sleep, I move so much I " m exhausted. I attempted work today which was dumb, lasted 4 hours because sitting caused the pain to go down my thighs to my legs. Can't take the pain meds at work. On Thursday I'm scheduled to get shots in each hip, and probably another knuckle shot as well. I have also managed to get a trigger finger that snaps and sticks, which oddly I find amusing. It hurts but mostly feels uncomfortable. It's like a gumby finger. Anyone else have this experience? I've also taken my 3rd Enbrel. Very little side effects with number 3, so that's great, but i did manage to get a lovely red, swollen itchy patch at the injection site. I picked my other thigh, but i'm not worried about it, no biggie. Now that I'm home for a few days and pondering things, I'm wondering how much longer can I work in a fast paced job where i'm up and down all day and on the computer. My hands don't look very RA-ish, but I feel them weakening. I can't open my gas cap on the car anymore. Usually someone helps but I've become very creative if I have to do it alone So I wonder about disability, I have a nurse thru my insurance company, also comes with a case manager today. we spoke about OT and PT, a possible raised toilet seat and a handicapped placard. Have I lost my mind? Has this really become my reality? My future? Sorry guys, just had to write, I " m getting worried, and I don't know what to do if anything at all! Maybe I'm just worrying too much. I worry about missing work even though I have a note, and work with nurses, they've been so good to me, and I do my job well, but sometimes the pressure of not letting down the team gets to me and I drag myself in when I have no business being there. I'm also having cognitive issues , losing sense of direction, focus like a 3 week old kitten, fatigue right after doing something. I'm seeing a neurologist June 16th. I'd love to hear from anyone else going thru this, or who has gone thru this, etc. Sorry for writing a novella....and thanks for listening! Heidi and her spastic trigger pinky Massachusetts To those who believe, no explanation is necessary; to those who dont, no explanation is possible ************ **Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (http://autos. aol.com/used? NCID=aolcmp00300 000002851) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 Heidi, I feel your pain and your worrying... I am 32 and I am also on the computer typing most of the day and having to get up and down out of a chair the remainder. We appear to have many similarities as I am also on my 3rd shot of enbrel and I'm also experiencing the loss of concentration and the loss of strength/control of my fingers... With my College loans and remodeling my crapy house, I greatly fear the idea of being disabled... There is no way we can live in Tax Central (NJ) and not have my income to keep this family going... Knowing me, I'll push until I kill myself... Sad but still true! I truly hope things get better for you, because 45 is still very young... The Enbrel and metheltrexate combo is already starting to give me relief. Hopefully yours will start working soon. My best advise is to try too stay positive and relax as much as possible.... (and believe me, I know its easier said then done). Bonnie R. -- In , sposy@... wrote: > > Hi Group, > > I don't know where to start. I'm just feeling full of frustration. I feel > so old, and I'm 45. Maybe that is old. I saw my rheumy this weekend (he's > doing wknd hours as he is leaving and wants to make sure we all get our visits > in and our needs met, he's very special). Anyway, he noticed I was walking > funny , told him my hips were hurting. Naturally he had to poke them. I nearly > jumped off the table before he could do his full poke. Both hips are now in > total, extremely painful active bursitis. I can't sit, I can't stand, I > can't sleep, I move so much I " m exhausted. I attempted work today which was dumb, > lasted 4 hours because sitting caused the pain to go down my thighs to my > legs. Can't take the pain meds at work. On Thursday I'm scheduled to get > shots in each hip, and probably another knuckle shot as well. I have also > managed to get a trigger finger that snaps and sticks, which oddly I find amusing. > It hurts but mostly feels uncomfortable. It's like a gumby finger. Anyone > else have this experience? I've also taken my 3rd Enbrel. Very little side > effects with number 3, so that's great, but i did manage to get a lovely red, > swollen itchy patch at the injection site. I picked my other thigh, but i'm > not worried about it, no biggie. Now that I'm home for a few days and > pondering things, I'm wondering how much longer can I work in a fast paced job > where i'm up and down all day and on the computer. My hands don't look very > RA-ish, but I feel them weakening. I can't open my gas cap on the car anymore. > Usually someone helps but I've become very creative if I have to do it alone > So I wonder about disability, I have a nurse thru my insurance company, also > comes with a case manager today. we spoke about OT and PT, a possible raised > toilet seat and a handicapped placard. Have I lost my mind? Has this really > become my reality? My future? Sorry guys, just had to write, I " m getting > worried, and I don't know what to do if anything at all! Maybe I'm just worrying > too much. I worry about missing work even though I have a note, and work > with nurses, they've been so good to me, and I do my job well, but sometimes > the pressure of not letting down the team gets to me and I drag myself in when > I have no business being there. I'm also having cognitive issues , losing > sense of direction, focus like a 3 week old kitten, fatigue right after doing > something. I'm seeing a neurologist June 16th. I'd love to hear from anyone > else going thru this, or who has gone thru this, etc. Sorry for writing a > novella....and thanks for listening! > > Heidi and her spastic trigger pinky > Massachusetts > > To those who believe, no explanation is necessary; to those who dont, no > explanation is possible > > > > **************Need a new ride? Check out the largest site for U.S. used car > listings at AOL Autos. > (http://autos.aol.com/used?NCID=aolcmp00300000002851) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 HI Kim, I hear where you are coming from. I need the income as well, and I do like my job, but with what happened today, I dont feel all that comfortable. We do not have an HR dept. It's a one woman show , she does it all. Tomorrow I need to outline a good note for my Dr. , although he's been great dealing with my ins. co and his first note. I have to admit there are days that I just can't handle work, like the RA has gone to my brain. I'm worried about my cognitive issues. It's more than a typical brain fart, and I know that todays stress doesn't help matters. I'm so hoping that my hip shots tomorrow resolve this current issue and let me work. I have feelers out regarding disability and a handicapped placard. My company ignored my Drs. request in his first letter that I park close to the building. Currently I am walking up a hill or the most evil brick stairs i've encountered, no railing, wide steps, i hurt more doing those! Anyway, if you'd like to email me privately to compare notes that would be great. _sposy@..._ (mailto:sposy@...) Heidi To those who believe, no explanation is necessary; to those who dont, no explanation is possible In a message dated 4/30/2008 10:32:03 P.M. Eastern Daylight Time, queen_o_sheba@... writes: I so understand, I'm right there with you! I'm 48, fairly new to RA and experiencing most of the issues you've described. I was diagnosed in November and have been out of work for an alarming number of days. I've used up all of my sick and vacation days. I have talked to my HR department and I'm in the process of getting paperwork from my dr to cover my absences under FMLA. It can even protect you for intermittent absences (here a day, there a day..I simply can't make it through this day). I've learned a lot about FMLA - maybe we can compare notes as we work through it? My goal is to protect my job as long as possible because 1) I need the income to survive 2) I actually do love my job. My theory is, I'll just try to take it one-day-at-a-just try to take it one-day-at-a-<WBR>tim to keep my job, and see what comes. I have the trigger finger too. Fortunately it doesn't lock up too often - it freaks me out when it does! (I'm a wuss - you must teach me how to laugh at it!) I gave in to the disabled placard almost immediately and it truly has made life easier. Even when the pain is at an okay level, there are times when the fatigue is so extreme that if I wasn't able to park close to store entrances, I wouldn't even bother trying to go grocery shopping. I've also gone to OT and PT. I prefer to think of it as being proactive with the goal of staying as active and functional as possible rather than giving in to the disease. And if I can pick up any strategies or techniques that will help me live with RA productively, then that's what I'm after. But you know?.... some days I just want to rant and rave! Glad this board is here! :-) Kim > > Hi Group, > > I don't know where to start. I'm just feeling full of frustration. I feel > so old, and I'm 45. Maybe that is old. I saw my rheumy this weekend (he's > doing wknd hours as he is leaving and wants to make sure we all get our visits > in and our needs met, he's very special). Anyway, he noticed I was walking > funny , told him my hips were hurting. Naturally he had to poke them. I nearly > jumped off the table before he could do his full poke. Both hips are now in > total, extremely painful active bursitis. I can't sit, I can't stand, I > can't sleep, I move so much I " m exhausted. I attempted work today which was dumb, > lasted 4 hours because sitting caused the pain to go down my thighs to my > legs. Can't take the pain meds at work. On Thursday I'm scheduled to get > shots in each hip, and probably another knuckle shot as well. I have also > managed to get a trigger finger that snaps and sticks, which oddly I find amusing. > It hurts but mostly feels uncomfortable. It's like a gumby finger. Anyone > else have this experience? I've also taken my 3rd Enbrel. Very little side > effects with number 3, so that's great, but i did manage to get a lovely red, > swollen itchy patch at the injection site. I picked my other thigh, but i'm > not worried about it, no biggie. Now that I'm home for a few days and > pondering things, I'm wondering how much longer can I work in a fast paced job > where i'm up and down all day and on the computer. My hands don't look very > RA-ish, but I feel them weakening. I can't open my gas cap on the car anymore. > Usually someone helps but I've become very creative if I have to do it alone > So I wonder about disability, I have a nurse thru my insurance company, also > comes with a case manager today. we spoke about OT and PT, a possible raised > toilet seat and a handicapped placard. Have I lost my mind? Has this really > become my reality? My future? Sorry guys, just had to write, I " m getting > worried, and I don't know what to do if anything at all! Maybe I'm just worrying > too much. I worry about missing work even though I have a note, and work > with nurses, they've been so good to me, and I do my job well, but sometimes > the pressure of not letting down the team gets to me and I drag myself in when > I have no business being there. I'm also having cognitive issues , losing > sense of direction, focus like a 3 week old kitten, fatigue right after doing > something. I'm seeing a neurologist June 16th. I'd love to hear from anyone > else going thru this, or who has gone thru this, etc. Sorry for writing a > novella....and thanks for listening! > > Heidi and her spastic trigger pinky > Massachusetts > > To those who believe, no explanation is necessary; to those who dont, no > explanation is possible > > > > ************ ************<WBR>**Need a new ride? Check out the largest used car > listings at AOL Autos. > (_http://autos.http://autos.http://autos.<WBhttp://au_ (http://autos.aol.com/used?NCID=aolcmp00300000002851) ) > > > [Non-text portions of this message have been removed] > **************Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (http://autos.aol.com/used?NCID=aolcmp00300000002851) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 I so understand, I'm right there with you! I'm 48, fairly new to RA and experiencing most of the issues you've described. I was diagnosed in November and have been out of work for an alarming number of days. I've used up all of my sick and vacation days. I have talked to my HR department and I'm in the process of getting paperwork from my dr to cover my absences under FMLA. It can even protect you for intermittent absences (here a day, there a day..I simply can't make it through this day). I've learned a lot about FMLA - maybe we can compare notes as we work through it? My goal is to protect my job as long as possible because 1) I need the income to survive 2) I actually do love my job. My theory is, I'll just try to take it one-day-at-a-time, explore all avenues open to me to keep my job, and see what comes. I have the trigger finger too. Fortunately it doesn't lock up too often - it freaks me out when it does! (I'm a wuss - you must teach me how to laugh at it!) I gave in to the disabled placard almost immediately and it truly has made life easier. Even when the pain is at an okay level, there are times when the fatigue is so extreme that if I wasn't able to park close to store entrances, I wouldn't even bother trying to go grocery shopping. I've also gone to OT and PT. I prefer to think of it as being proactive with the goal of staying as active and functional as possible rather than giving in to the disease. And if I can pick up any strategies or techniques that will help me live with RA productively, then that's what I'm after. But you know?.... some days I just want to rant and rave! Glad this board is here! :-) Kim > > Hi Group, > > I don't know where to start. I'm just feeling full of frustration. I feel > so old, and I'm 45. Maybe that is old. I saw my rheumy this weekend (he's > doing wknd hours as he is leaving and wants to make sure we all get our visits > in and our needs met, he's very special). Anyway, he noticed I was walking > funny , told him my hips were hurting. Naturally he had to poke them. I nearly > jumped off the table before he could do his full poke. Both hips are now in > total, extremely painful active bursitis. I can't sit, I can't stand, I > can't sleep, I move so much I " m exhausted. I attempted work today which was dumb, > lasted 4 hours because sitting caused the pain to go down my thighs to my > legs. Can't take the pain meds at work. On Thursday I'm scheduled to get > shots in each hip, and probably another knuckle shot as well. I have also > managed to get a trigger finger that snaps and sticks, which oddly I find amusing. > It hurts but mostly feels uncomfortable. It's like a gumby finger. Anyone > else have this experience? I've also taken my 3rd Enbrel. Very little side > effects with number 3, so that's great, but i did manage to get a lovely red, > swollen itchy patch at the injection site. I picked my other thigh, but i'm > not worried about it, no biggie. Now that I'm home for a few days and > pondering things, I'm wondering how much longer can I work in a fast paced job > where i'm up and down all day and on the computer. My hands don't look very > RA-ish, but I feel them weakening. I can't open my gas cap on the car anymore. > Usually someone helps but I've become very creative if I have to do it alone > So I wonder about disability, I have a nurse thru my insurance company, also > comes with a case manager today. we spoke about OT and PT, a possible raised > toilet seat and a handicapped placard. Have I lost my mind? Has this really > become my reality? My future? Sorry guys, just had to write, I " m getting > worried, and I don't know what to do if anything at all! Maybe I'm just worrying > too much. I worry about missing work even though I have a note, and work > with nurses, they've been so good to me, and I do my job well, but sometimes > the pressure of not letting down the team gets to me and I drag myself in when > I have no business being there. I'm also having cognitive issues , losing > sense of direction, focus like a 3 week old kitten, fatigue right after doing > something. I'm seeing a neurologist June 16th. I'd love to hear from anyone > else going thru this, or who has gone thru this, etc. Sorry for writing a > novella....and thanks for listening! > > Heidi and her spastic trigger pinky > Massachusetts > > To those who believe, no explanation is necessary; to those who dont, no > explanation is possible > > > > **************Need a new ride? Check out the largest site for U.S. used car > listings at AOL Autos. > (http://autos.aol.com/used?NCID=aolcmp00300000002851) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2010 Report Share Posted December 29, 2010 Hi Missie,  For me, I have to keep the it down to 15-20 minute MAX in any hour. In between, I sit or lay down and do something that can be done that way. If I do more, I pay for every minute. I actually set a timer.  I run a farm with many critters on it. Hard at feeding time to break it up like that- especially when it's cold- but it is what works for me.  How I did things when I had kids at home: Instead of 20 trips up & down stairs, try using totes or boxes to place the items belonging to each kid. I don't know your children's ages, but if they are all over 3, they can put away their own stuff. If they won't or don't, then they lose the use of those items for a week.  You simply need more help than you are getting, and they CAN do it themselves. Besides, it's not only good for you, but for them. It makes them responsible for their stuff and learning that there are consequences in life. Eventually, my clan ( we had 3 by birth and another 9 by aquisition - all boys ) learned that they had to put it where it belonged or they wouldn't have it. You have enough to do just raising them and doing the things that you have to do in a day. Work smarter instead of harder. Learn to listen to your body. I dunno about you, but I pay a price every time I don't.  Hope you find that helpful.  in SC  So, here's my question, how do you pace yourself to not over-do it, on good days? Missie- PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2010 Report Share Posted December 29, 2010 That is helpful thank you! My kids are wonderful about putting toys away at school. Most days they see me and instantly clean up, without their teacher telling them to. It's a fight we have every day at home though. They were pretty good tonight, which helps. I like that idea though. I like the idea of pacing myself like that. I did that the day before and was fine. I think I just got carried away yesterday, because I haven't felt good in months. Missie- PA > > Hi Missie, > Â > For me, I have to keep the it down to 15-20 minute MAX in any hour. In between, I sit or lay down and do something that can be done that way. If I do more, I pay for every minute. I actually set a timer. Quote Link to comment Share on other sites More sharing options...
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