Question:
– Cyberhugs, DianeW
– Hide quoted text — Show quoted text -> I was on the plaquenil/MTX/azulfidine combo for a couple months, and it > really finally did seem to be working and allowing me to reduce my prednisone > dosage. Then the infections started. When I had a resistant sinus infection, > a UTI, _and_ a skin abcess all at once, I finally had enough. The rheumie > agreed, and we reduced the MTX to 10mg. No infections, but it didn’t _do_ > anything other than make me want to yarf. So we’ve dropped the MTX and the > Plaquenil because I’ve been on the highest dosage for 7 years now and need > to take a vacation from it. Started Arava at 10mg (half dose) with no loading > dose. I’ve had too many GI tract problems to do the normal dosing. I’ve > registered with Amgen to get in line for Enbrel. Hopefully, it won’t be > months (I plan to get the rheumie to sign me off for a priority spot). If > the wait is too long, we may have to try Remicade, but it’s not a great > prospect given my problems with MTX. After looking at the study results for > Humira, neither of us wants me to be the lab rat. I already have lupus-like > symptoms, so Humira seems like a really bad idea in my case. And he’s yet to > have _anyone_ want to try Kineret. > We’re ordering me a second walker to use inside the house (there’s steps > up to the porch, then a step up to the doorjamb–this is a rental house, we’re > not paying to put a ramp in here). George is upset that I’ve fallen one too > many times in the house, so now I’ll be using a walker indoors too. At least > the cats don’t think the walker is a toy. A couple of my falls were from the > cats trying to play with my cane. ;} > On the other hand, we’ve had our 11th wedding anniversary, and he’s still a handicapped > now!" Once he understood why I was getting hysterical over little nothing > things, he’s been entirely supportive ever since. He’s currently twisting his > boss’s arm over getting me an attendant for a couple hours each day when he’s > gone on business trips. Which means that when he gets back, the sink won’t > be full of dirty dishes and the bedroom won’t be taken over by a pile of > unwashed laundry. Less stress for me, less stress and worry for him. He > even threatened to not go if they didn’t pay for an attendant. His boss, > and the boss’s boss agree, it’s corporate management that were dragging their > feet. He doesn’t leave until February, so we have enough time to finish > re-arranging the house so I can get around unassisted. > After the two monster projects are done, the next thing on the agenda is > to start looking for a new house. If we _owned_ our house, we wouldn’t > feel like we were wasting money to build ramps, put in a dishwasher, and > buy a front-loading washing machine. At least this place is all on one > level, though there’s no way the walker will ever fit into the bathroom. > I haven’t been posting or even reading much lately because simply getting > through each day has taken too much out of me. Hopefully that’ll get better. > During my adjustment phase, I’ve been using gallows humor to keep from going > totally over the edge. George is now urging me to offer some of the artwork > I’ve done lately as tshirts (probably through CafePress). I’ll post those > seperately. > Damn, this winter has just sucked for too many of us. Hope we _all_ see > better days soon. > — > Head Muso, White Rats Morris, Faultline Morris > Member, Knights of Xenu (1995). Chaos Monger and Jill of All Trades. > "A head-on collision between Morticia Adams and Martha Stewart"
Response:
{{{{{LEE}}}}} Gosh I’m sorry to hear that things are so tough for you right now. When I don’t see much from someone I like to think they are doing well. I’ve been thru the walker thing in the house and it’s really helpful once you get the hang of it and some accoutrements to help you carry things. That and remembering where you left it when you get up and walk away cause you aren’t used to using it. I actually use my manual wheelchair more in the house than I do the walker, but that’s due to the broken foot and fatigue. I use my feet to move the wheelchair around. I use the walker when I’m out when I can walk ok but need more help than a cane. What kind of walker did you get? Does it have a seat on it or a basket or such? I really like to use the walker when I have to go someplace like the post office and I’m likely to have to stand in line. I have a seat to sit on while I wait and a small basket to hold what I’m trying to carry. I’ve found a clear tray also that will hold a drink! Have you decorated it yet? The Christmas I was using mine, I had it all decorated! Bells and all. Think of all the holidays to come to give yourself a little cheer! I hope Enbrel works for you. It was a great thing for me. Got me out of bed and moving again. I had to add Arava with it this year and that’s been a good thing also. The number of swollen joints is down to two from almost all. I started it without the loading dose also. Due to a bout of bronchitis I’ve had to stop both of them (last Monday) and so far nothing except fatigue has returned. Hopefully, this will end soon. Hang in there and know we are thinking about you! — Cyberhugs, DianeW
– Hide quoted text — Show quoted text -> I was on the plaquenil/MTX/azulfidine combo for a couple months, and it > really finally did seem to be working and allowing me to reduce my prednisone > dosage. Then the infections started. When I had a resistant sinus infection, > a UTI, _and_ a skin abcess all at once, I finally had enough. The rheumie > agreed, and we reduced the MTX to 10mg. No infections, but it didn’t _do_ > anything other than make me want to yarf. So we’ve dropped the MTX and the > Plaquenil because I’ve been on the highest dosage for 7 years now and need > to take a vacation from it. Started Arava at 10mg (half dose) with no loading > dose. I’ve had too many GI tract problems to do the normal dosing. I’ve > registered with Amgen to get in line for Enbrel. Hopefully, it won’t be > months (I plan to get the rheumie to sign me off for a priority spot). If > the wait is too long, we may have to try Remicade, but it’s not a great > prospect given my problems with MTX. After looking at the study results for > Humira, neither of us wants me to be the lab rat. I already have lupus-like > symptoms, so Humira seems like a really bad idea in my case. And he’s yet to > have _anyone_ want to try Kineret. > We’re ordering me a second walker to use inside the house (there’s steps > up to the porch, then a step up to the doorjamb–this is a rental house, we’re > not paying to put a ramp in here). George is upset that I’ve fallen one too > many times in the house, so now I’ll be using a walker indoors too. At least > the cats don’t think the walker is a toy. A couple of my falls were from the > cats trying to play with my cane. ;} > On the other hand, we’ve had our 11th wedding anniversary, and he’s still a handicapped > now!" Once he understood why I was getting hysterical over little nothing > things, he’s been entirely supportive ever since. He’s currently twisting his > boss’s arm over getting me an attendant for a couple hours each day when he’s > gone on business trips. Which means that when he gets back, the sink won’t > be full of dirty dishes and the bedroom won’t be taken over by a pile of > unwashed laundry. Less stress for me, less stress and worry for him. He > even threatened to not go if they didn’t pay for an attendant. His boss, > and the boss’s boss agree, it’s corporate management that were dragging their > feet. He doesn’t leave until February, so we have enough time to finish > re-arranging the house so I can get around unassisted. > After the two monster projects are done, the next thing on the agenda is > to start looking for a new house. If we _owned_ our house, we wouldn’t > feel like we were wasting money to build ramps, put in a dishwasher, and > buy a front-loading washing machine. At least this place is all on one > level, though there’s no way the walker will ever fit into the bathroom. > I haven’t been posting or even reading much lately because simply getting > through each day has taken too much out of me. Hopefully that’ll get better. > During my adjustment phase, I’ve been using gallows humor to keep from going > totally over the edge. George is now urging me to offer some of the artwork > I’ve done lately as tshirts (probably through CafePress). I’ll post those > seperately. > Damn, this winter has just sucked for too many of us. Hope we _all_ see > better days soon. > — > Head Muso, White Rats Morris, Faultline Morris > Member, Knights of Xenu (1995). Chaos Monger and Jill of All Trades. > "A head-on collision between Morticia Adams and Martha Stewart"
Response:
>The jury is still out for >me on this injectible MTX. Last weekend was a horrible blur of dizziness
Diana-Sure hope things settle down for you soon. Maybe it is going to be time soon, to try something else? How about Arava? Remember Ken Mc has had a near miracle from it. And it really helped me for a while. Maybe you will get lucky!! Char "Remember, I’m pulling for ya’. We’re all in this together." Red Green
Response:
>Have you decorated it yet? >The Christmas I was using mine, I had it all decorated! Bells and all. >Think of all the holidays to come to give yourself a little cheer!
I already have headlights on it (they’re krypton bicycle lights). Added them after I almost got run over crossing the street one night. Right now, I have the Gimp Jolly Roger banner hung across the backrest bar. This one has a basket, but I found small things tended to fall through the bars, so I added a zip-up duffel bag inside the basket. It’s black with cherries embroidered all over it. [smirk] The guys tell me I need to add a hood ornament to the front of the basket now. I’ve got a set of miniature cadillac fins that I’m painting to match the candy apple red finish. I’ll probably also add big red LEDs to the tail lights. When that’s finished, all the decorations will transfer over to the new walker (when it arrives, should be in a week or so). k/1 – a woman after my own heart! cool! i’d love to see a photo of that walker of yours!!! kate
Response:
((DeeTee)) – Hide quoted text — Show quoted text – > me on this injectible MTX. Last weekend was a horrible blur of dizziness > (went to ER on Tuesday with stroke symptoms – nothing found. Now have > appointment with GP for blood pressure stuff (I’m only on THREE meds for it > now. Clearly they’ve stopped working.) I stayed home from church today > ’cause I keep trying to lose breakfast. So I am hoping it’s just an > adjustment phase. > Keep us informed, > DeeTee > DeeTee and Bob Taggart > http://home.earthlink.net/~bdtaggart/ > I was on the plaquenil/MTX/azulfidine combo for a couple months, and it > really finally did seem to be working and allowing me to reduce my > prednisone > dosage. Then the infections started. When I had a resistant sinus > infection, > a UTI, _and_ a skin abcess all at once, I finally had enough. The rheumie > agreed, and we reduced the MTX to 10mg. No infections, but it didn’t _do_ > anything other than make me want to yarf. So we’ve dropped the MTX and > the > Plaquenil because I’ve been on the highest dosage for 7 years now and need > to take a vacation from it. Started Arava at 10mg (half dose) with no > loading > dose. I’ve had too many GI tract problems to do the normal dosing. I’ve > registered with Amgen to get in line for Enbrel. Hopefully, it won’t be > months (I plan to get the rheumie to sign me off for a priority spot). If > the wait is too long, we may have to try Remicade, but it’s not a great > prospect given my problems with MTX. After looking at the study results > for > Humira, neither of us wants me to be the lab rat. I already have > lupus-like > symptoms, so Humira seems like a really bad idea in my case. And he’s yet > to > have _anyone_ want to try Kineret. > We’re ordering me a second walker to use inside the house (there’s steps > up to the porch, then a step up to the doorjamb–this is a rental house, > we’re > not paying to put a ramp in here). George is upset that I’ve fallen one > too > many times in the house, so now I’ll be using a walker indoors too. At > least > the cats don’t think the walker is a toy. A couple of my falls were from > the > cats trying to play with my cane. ;} > On the other hand, we’ve had our 11th wedding anniversary, and he’s still > a > handicapped > now!" Once he understood why I was getting hysterical over little nothing > things, he’s been entirely supportive ever since. He’s currently twisting > his > boss’s arm over getting me an attendant for a couple hours each day when > he’s > gone on business trips. Which means that when he gets back, the sink > won’t > be full of dirty dishes and the bedroom won’t be taken over by a pile of > unwashed laundry. Less stress for me, less stress and worry for him. He > even threatened to not go if they didn’t pay for an attendant. His boss, > and the boss’s boss agree, it’s corporate management that were dragging > their > feet. He doesn’t leave until February, so we have enough time to finish > re-arranging the house so I can get around unassisted. > After the two monster projects are done, the next thing on the agenda is > to start looking for a new house. If we _owned_ our house, we wouldn’t > feel like we were wasting money to build ramps, put in a dishwasher, and > buy a front-loading washing machine. At least this place is all on one > level, though there’s no way the walker will ever fit into the bathroom. > I haven’t been posting or even reading much lately because simply getting > through each day has taken too much out of me. Hopefully that’ll get > better. > During my adjustment phase, I’ve been using gallows humor to keep from > going > totally over the edge. George is now urging me to offer some of the > artwork > I’ve done lately as tshirts (probably through CafePress). I’ll post those > seperately. > Damn, this winter has just sucked for too many of us. Hope we _all_ see > better days soon. > — > Head Muso, White Rats Morris, Faultline Morris > Member, Knights of Xenu (1995). Chaos Monger and Jill of All Trades. > "A head-on collision between Morticia Adams and Martha Stewart"
Response:
(((((((((((((((((((((Lee))))))))))))))))))) praying for enbrel for you! and you’re right, it has been a sucky-poo winter for a bunch on the ng. time for change! kate
I was on the plaquenil/MTX/azulfidine combo for a couple months, and it really finally did seem to be working and allowing me to reduce my prednisone dosage. Then the infections started. When I had a resistant sinus infection, a UTI, _and_ a skin abcess all at once, I finally had enough. The rheumie agreed, and we reduced the MTX to 10mg. No infections, but it didn’t _do_ anything other than make me want to yarf. So we’ve dropped the MTX and the Plaquenil because I’ve been on the highest dosage for 7 years now and need to take a vacation from it. Started Arava at 10mg (half dose) with no loading dose. I’ve had too many GI tract problems to do the normal dosing. I’ve registered with Amgen to get in line for Enbrel. Hopefully, it won’t be months (I plan to get the rheumie to sign me off for a priority spot). If the wait is too long, we may have to try Remicade, but it’s not a great prospect given my problems with MTX. After looking at the study results for Humira, neither of us wants me to be the lab rat. I already have lupus-like symptoms, so Humira seems like a really bad idea in my case. And he’s yet to have _anyone_ want to try Kineret. We’re ordering me a second walker to use inside the house (there’s steps up to the porch, then a step up to the doorjamb–this is a rental house, we’re not paying to put a ramp in here). George is upset that I’ve fallen one too many times in the house, so now I’ll be using a walker indoors too. At least the cats don’t think the walker is a toy. A couple of my falls were from the cats trying to play with my cane. ;} On the other hand, we’ve had our 11th wedding anniversary, and he’s still a handicapped now!" Once he understood why I was getting hysterical over little nothing things, he’s been entirely supportive ever since. He’s currently twisting his boss’s arm over getting me an attendant for a couple hours each day when he’s gone on business trips. Which means that when he gets back, the sink won’t be full of dirty dishes and the bedroom won’t be taken over by a pile of unwashed laundry. Less stress for me, less stress and worry for him. He even threatened to not go if they didn’t pay for an attendant. His boss, and the boss’s boss agree, it’s corporate management that were dragging their feet. He doesn’t leave until February, so we have enough time to finish re-arranging the house so I can get around unassisted. After the two monster projects are done, the next thing on the agenda is to start looking for a new house. If we _owned_ our house, we wouldn’t feel like we were wasting money to build ramps, put in a dishwasher, and buy a front-loading washing machine. At least this place is all on one level, though there’s no way the walker will ever fit into the bathroom. I haven’t been posting or even reading much lately because simply getting through each day has taken too much out of me. Hopefully that’ll get better. During my adjustment phase, I’ve been using gallows humor to keep from going totally over the edge. George is now urging me to offer some of the artwork I’ve done lately as tshirts (probably through CafePress). I’ll post those seperately. Damn, this winter has just sucked for too many of us. Hope we _all_ see better days soon. — Head Muso, White Rats Morris, Faultline Morris Member, Knights of Xenu (1995). Chaos Monger and Jill of All Trades. "A head-on collision between Morticia Adams and Martha Stewart"
Response:
>I use my feet to move the wheelchair around.
Hah. When I’m in very long lines, I do this with the walker. Gets some odd looks since of course, you have to scoot along backwards. >I use the walker >when I’m out when I can walk ok but need more help than a cane. What kind >of walker did you get? Does it have a seat on it or a basket or such?
I got a four-wheeled model made by Otho-Nova. This one’s the Cruiser Deluxe. The second one we’re ordering will be the Junior model, which is about 3 inches shorter. The handles are at the right height for me, but my feet don’t quite rest on the floor if I sit down on the seat. This one will be fine for in the house. In fact, the new one is this model: http://www.walgreens.com/store/product.jhtml?PRODID=376665&CATID=100283 The current one is also red. I’ll stow the shorter one in the car and use it when I’m out and about. Having a chair that doesn’t have a seat that’s too soft or saggy and has a back support in the right place has already saved me a couple times. The chairs at our local clinic are all slouch chairs and I can’t get up if I sit in them for more than a few minutes. >I really like to use the walker when I have to go someplace like the post >office and I’m likely to have to stand in line. I have a seat to sit on >while I wait and a small basket to hold what I’m trying to carry. I’ve >found a clear tray also that will hold a drink!
Heh. Jody keeps telling me that I need to get a cup holder for mine. I’m gonna dig around at the local non-slimey wheelchair repair place and see if they can come up with a quick-release cane holder and a cup holder for me. >Have you decorated it yet? >The Christmas I was using mine, I had it all decorated! Bells and all. >Think of all the holidays to come to give yourself a little cheer!
I already have headlights on it (they’re krypton bicycle lights). Added them after I almost got run over crossing the street one night. Right now, I have the Gimp Jolly Roger banner hung across the backrest bar. This one has a basket, but I found small things tended to fall through the bars, so I added a zip-up duffel bag inside the basket. It’s black with cherries embroidered all over it. [smirk] The guys tell me I need to add a hood ornament to the front of the basket now. I’ve got a set of miniature cadillac fins that I’m painting to match the candy apple red finish. I’ll probably also add big red LEDs to the tail lights. When that’s finished, all the decorations will transfer over to the new walker (when it arrives, should be in a week or so). >I hope Enbrel works for you. It was a great thing for me. Got me out of >bed and moving again. I had to add Arava with it this year and that’s been >a good thing also. The number of swollen joints is down to two from almost >all. I started it without the loading dose also. Due to a bout of >bronchitis I’ve had to stop both of them (last Monday) and so far nothing >except fatigue has returned. Hopefully, this will end soon.
Hope so. Hope that I _get_ the Enbrel in a reasonable time. No one at our clinic has managed to receive it yet, but that may be because the pharmacy is clueless about the patients needing to register. I called Amgen’s 888 number and registered myself. The packet should get here sometime this week, then I get it signed and mail it back. >Hang in there and know we are thinking about you!
Thank you. — Head Muso, White Rats Morris, Faultline Morris Member, Knights of Xenu (1995). Chaos Monger and Jill of All Trades. "A head-on collision between Morticia Adams and Martha Stewart"
Response:
me on this injectible MTX. Last weekend was a horrible blur of dizziness (went to ER on Tuesday with stroke symptoms – nothing found. Now have appointment with GP for blood pressure stuff (I’m only on THREE meds for it now. Clearly they’ve stopped working.) I stayed home from church today ’cause I keep trying to lose breakfast. So I am hoping it’s just an adjustment phase. Keep us informed, DeeTee DeeTee and Bob Taggart http://home.earthlink.net/~bdtaggart/
– Hide quoted text — Show quoted text -> I was on the plaquenil/MTX/azulfidine combo for a couple months, and it > really finally did seem to be working and allowing me to reduce my prednisone > dosage. Then the infections started. When I had a resistant sinus infection, > a UTI, _and_ a skin abcess all at once, I finally had enough. The rheumie > agreed, and we reduced the MTX to 10mg. No infections, but it didn’t _do_ > anything other than make me want to yarf. So we’ve dropped the MTX and the > Plaquenil because I’ve been on the highest dosage for 7 years now and need > to take a vacation from it. Started Arava at 10mg (half dose) with no loading > dose. I’ve had too many GI tract problems to do the normal dosing. I’ve > registered with Amgen to get in line for Enbrel. Hopefully, it won’t be > months (I plan to get the rheumie to sign me off for a priority spot). If > the wait is too long, we may have to try Remicade, but it’s not a great > prospect given my problems with MTX. After looking at the study results for > Humira, neither of us wants me to be the lab rat. I already have lupus-like > symptoms, so Humira seems like a really bad idea in my case. And he’s yet to > have _anyone_ want to try Kineret. > We’re ordering me a second walker to use inside the house (there’s steps > up to the porch, then a step up to the doorjamb–this is a rental house, we’re > not paying to put a ramp in here). George is upset that I’ve fallen one too > many times in the house, so now I’ll be using a walker indoors too. At least > the cats don’t think the walker is a toy. A couple of my falls were from the > cats trying to play with my cane. ;} > On the other hand, we’ve had our 11th wedding anniversary, and he’s still a handicapped > now!" Once he understood why I was getting hysterical over little nothing > things, he’s been entirely supportive ever since. He’s currently twisting his > boss’s arm over getting me an attendant for a couple hours each day when he’s > gone on business trips. Which means that when he gets back, the sink won’t > be full of dirty dishes and the bedroom won’t be taken over by a pile of > unwashed laundry. Less stress for me, less stress and worry for him. He > even threatened to not go if they didn’t pay for an attendant. His boss, > and the boss’s boss agree, it’s corporate management that were dragging their > feet. He doesn’t leave until February, so we have enough time to finish > re-arranging the house so I can get around unassisted. > After the two monster projects are done, the next thing on the agenda is > to start looking for a new house. If we _owned_ our house, we wouldn’t > feel like we were wasting money to build ramps, put in a dishwasher, and > buy a front-loading washing machine. At least this place is all on one > level, though there’s no way the walker will ever fit into the bathroom. > I haven’t been posting or even reading much lately because simply getting > through each day has taken too much out of me. Hopefully that’ll get better. > During my adjustment phase, I’ve been using gallows humor to keep from going > totally over the edge. George is now urging me to offer some of the artwork > I’ve done lately as tshirts (probably through CafePress). I’ll post those > seperately. > Damn, this winter has just sucked for too many of us. Hope we _all_ see > better days soon. > — > Head Muso, White Rats Morris, Faultline Morris > Member, Knights of Xenu (1995). Chaos Monger and Jill of All Trades. > "A head-on collision between Morticia Adams and Martha Stewart"
Response:
I was on the plaquenil/MTX/azulfidine combo for a couple months, and it really finally did seem to be working and allowing me to reduce my prednisone dosage. Then the infections started. When I had a resistant sinus infection, a UTI, _and_ a skin abcess all at once, I finally had enough. The rheumie agreed, and we reduced the MTX to 10mg. No infections, but it didn’t _do_ anything other than make me want to yarf. So we’ve dropped the MTX and the Plaquenil because I’ve been on the highest dosage for 7 years now and need to take a vacation from it. Started Arava at 10mg (half dose) with no loading dose. I’ve had too many GI tract problems to do the normal dosing. I’ve registered with Amgen to get in line for Enbrel. Hopefully, it won’t be months (I plan to get the rheumie to sign me off for a priority spot). If the wait is too long, we may have to try Remicade, but it’s not a great prospect given my problems with MTX. After looking at the study results for Humira, neither of us wants me to be the lab rat. I already have lupus-like symptoms, so Humira seems like a really bad idea in my case. And he’s yet to have _anyone_ want to try Kineret. We’re ordering me a second walker to use inside the house (there’s steps up to the porch, then a step up to the doorjamb–this is a rental house, we’re not paying to put a ramp in here). George is upset that I’ve fallen one too many times in the house, so now I’ll be using a walker indoors too. At least the cats don’t think the walker is a toy. A couple of my falls were from the cats trying to play with my cane. ;} On the other hand, we’ve had our 11th wedding anniversary, and he’s still a now!" Once he understood why I was getting hysterical over little nothing things, he’s been entirely supportive ever since. He’s currently twisting his boss’s arm over getting me an attendant for a couple hours each day when he’s gone on business trips. Which means that when he gets back, the sink won’t be full of dirty dishes and the bedroom won’t be taken over by a pile of unwashed laundry. Less stress for me, less stress and worry for him. He even threatened to not go if they didn’t pay for an attendant. His boss, and the boss’s boss agree, it’s corporate management that were dragging their feet. He doesn’t leave until February, so we have enough time to finish re-arranging the house so I can get around unassisted. After the two monster projects are done, the next thing on the agenda is to start looking for a new house. If we _owned_ our house, we wouldn’t feel like we were wasting money to build ramps, put in a dishwasher, and buy a front-loading washing machine. At least this place is all on one level, though there’s no way the walker will ever fit into the bathroom. I haven’t been posting or even reading much lately because simply getting through each day has taken too much out of me. Hopefully that’ll get better. During my adjustment phase, I’ve been using gallows humor to keep from going totally over the edge. George is now urging me to offer some of the artwork I’ve done lately as tshirts (probably through CafePress). I’ll post those seperately. Damn, this winter has just sucked for too many of us. Hope we _all_ see better days soon. — Head Muso, White Rats Morris, Faultline Morris Member, Knights of Xenu (1995). Chaos Monger and Jill of All Trades. "A head-on collision between Morticia Adams and Martha Stewart"