Question:
–No one deserves to have to live in pain. No, sweetie, nobody does, but especially not a sweet person like you. Just wish you didn’t have the pain in the first place — you’ve got enough on your plate as it is. Thanks for letting us know how you are . . . I for one worry when I don’t see something from you for a while. Be well, dearest. love, mary
Response:
Catherine, I’m glad you’re back, too. I missed your keen sense of humor and your fine sense of style. Kat
Response:
Dear HRH: Please know that many of us wrote just to cheer you up not for you to write us back! PLEASE know that we were just worried and hoped to brighten your day just as you have brightened mine by feeling good enough to post! Take Care Sweetie! Love, Deanie – Hide quoted text — Show quoted text – I see Albert had already told you what’s been going on with me the last month or so. Major CNS (central nervous system) inflammation/involvement with the wolf winning most of the rounds. I have 900+ emails (from a lupus mail list I belong to) to read, and some from this group…you darlings…you know who you are 
I will get to them. It hasn’t been much fun, but I’m home and the weather is beeyootiful and it’s so nice to see the kids lying on the carpet playing Grand Turismo III.and the man being such a sweetheart. When I got up Friday morning there were notes all over…stuck in my keyboard…taped to the satellite remote…wrapped around my toothbrush…folded in my Sony play station….tucked in my tobaccy can, saying he loves me and is glad I’m here. I’m pretty lucky. Today the kids got my kitchen counters sparkling, I won’t mention to them that most of what was on the counters is now on the floor, it’s the thought that counts right? I sure would like to get better…wouldn’t we all. They tell me now that I may not regain all of my cognitive function. That really threw me. Not that I was ever the brightest bulb but even so. I don’t know if that means even if I try real hard to relearn/remember what I can’t now if I can ever get back to normal …I don’t think so. That’s what they are telling me to believe. I find that part frightening and discouraging, it seems I already try so hard. For a basically lazy person that takes a lot of effort:) The good news is few of my clients have left me thru this whole nightmare year and the ones that have…well I didn’t want them as clients anyway:) The ones that stayed have been kind and patient even tho my usual 48 hour turnover time in editing their websites is more like 7- 10 days now. Not one single complaint…amazing. I’ve read through the posts that my reader shows…I think it goes back 500 posts. Everything before that though I’ve lost. Is everyone still the same? No one died or anything I hope. If anyone had the time or energy to bring me up to date on important stuff I’d sure appreciate it. My doc still hasn’t changed my pain meds and they just aren’t doing the trick. My next office visit is in about 3 weeks, to discuss resuming the chemo treatments and I *need* to have a way to get through to him by then. No one deserves to have to live in pain. He is prescribing me some pain meds and I’m oh so grateful for them but between tolerance and my condition being worse I get only part of the day when things are bearable pain wise. Last time I tried to talk to him about it he cut me off with "You are too young, do you have any idea how your tolerance will grow by the time you’re 50? If your lupus continues as active as it is now? I don’t *care*! I don’t want to live to 50 if my life has to be like this. I know you can all relate so I don’t feel too much like this is whining. So I have a few weeks to come up with a way to talk to him. Well that’s long enough for this novel I missed Y’all. love, catherine
Response:
Catherine…..I’m glad to finally "hear" from you….and so sorry about the turn of events. Please try to let someone know when things are bad B4 you off and disappear? Take it slowly; maybe someone will come up w/something that will fix us. Rae
– Hide quoted text — Show quoted text – I see Albert had already told you what’s been going on with me the last month or so.
Response:
Oh Catherine…you’re such a VERY bright bulb in so many ways! We’ve missed you, and I’m so glad to see you back! Codeee – Hide quoted text — Show quoted text -Welcome back… Ronnie I see Albert had already told you what’s been going on with me the last month or so. Major CNS (central nervous system) inflammation/involvement with the wolf winning most of the rounds. I have 900+ emails (from a lupus mail list I belong to) to read, and some from this group…you darlings…you know who you are I will get to them. It hasn’t been much fun, but I’m home and the weather is beeyootiful and it’s so nice to see the kids lying on the carpet playing Grand Turismo III.and the man being such a sweetheart. When I got up Friday morning there were notes all over…stuck in my keyboard…taped to the satellite remote…wrapped around my toothbrush…folded in my Sony play station….tucked in my tobaccy can, saying he loves me and is glad I’m here. I’m pretty lucky. Today the kids got my kitchen counters sparkling, I won’t mention to them that most of what was on the counters is now on the floor, it’s the thought that counts right? I sure would like to get better…wouldn’t we all. They tell me now that I may not regain all of my cognitive function. That really threw me. Not that I was ever the brightest bulb but even so. I don’t know if that means even if I try real hard to relearn/remember what I can’t now if I can ever get back to normal …I don’t think so. That’s what they are telling me to believe. I find that part frightening and discouraging, it seems I already try so hard. For a basically lazy person that takes a lot of effort:) The good news is few of my clients have left me thru this whole nightmare year and the ones that have…well I didn’t want them as clients anyway:) The ones that stayed have been kind and patient even tho my usual 48 hour turnover time in editing their websites is more like 7- 10 days now. Not one single complaint…amazing. I’ve read through the posts that my reader shows…I think it goes back 500 posts. Everything before that though I’ve lost. Is everyone still the same? No one died or anything I hope. If anyone had the time or energy to bring me up to date on important stuff I’d sure appreciate it. My doc still hasn’t changed my pain meds and they just aren’t doing the trick. My next office visit is in about 3 weeks, to discuss resuming the chemo treatments and I *need* to have a way to get through to him by then. No one deserves to have to live in pain. He is prescribing me some pain meds and I’m oh so grateful for them but between tolerance and my condition being worse I get only part of the day when things are bearable pain wise. Last time I tried to talk to him about it he cut me off with "You are too young, do you have any idea how your tolerance will grow by the time you’re 50? If your lupus continues as active as it is now? I don’t *care*! I don’t want to live to 50 if my life has to be like this. I know you can all relate so I don’t feel too much like this is whining. So I have a few weeks to come up with a way to talk to him. Well that’s long enough for this novel I missed Y’all. love, catherine
Response:
- Hide quoted text — Show quoted text – <snip My doc still hasn’t changed my pain meds and they just aren’t doing the trick. My next office visit is in about 3 weeks, to discuss resuming the chemo treatments and I *need* to have a way to get through to him by then. No one deserves to have to live in pain. He is prescribing me some pain meds and I’m oh so grateful for them but between tolerance and my condition being worse I get only part of the day when things are bearable pain wise. Last time I tried to talk to him about it he cut me off with "You are too young, do you have any idea how your tolerance will grow by the time you’re 50? If your lupus continues as active as it is now? I don’t *care*! I don’t want to live to 50 if my life has to be like this. I know you can all relate so I don’t feel too much like this is whining. So I have a few weeks to come up with a way to talk to him. Well that’s long enough for this novel I missed Y’all. love, catherine
Welcome back, Catherine. Your post was a real heart-tugger, from the wonderful sweetness and love shown by your family, to the terrible cruelty shown by your doctor. I can’t understand how your doctor can be so hard-hearted as he himself has been witnessing what you’ve been going through. He must not have much knowledge of proper pain management. Maybe you could gather info from the net, print it out and give it to him? I will be praying you receive better care. In the meantime, it’s great to see you back. Your strength is such inspiration, and I see your humor is still alive and well too. Good for you! -Therese
Response:
snipped My doc still hasn’t changed my pain meds and they just aren’t doing the trick. My next office visit is in about 3 weeks, to discuss resuming the chemo treatments and I *need* to have a way to get through to him by then. No one deserves to have to live in pain. He is prescribing me some pain meds and I’m oh so grateful for them but between tolerance and my condition being worse I get only part of the day when things are bearable pain wise. Last time I tried to talk to him about it he cut me off with "You are too young, do you have any idea how your tolerance will grow by the time you’re 50? If your lupus continues as active as it is now? I don’t *care*! I don’t want to live to 50 if my life has to be like this.
snipped Catherine, this makes me *so* angry! Does your doctor have any compassion? Who gives a shit how old you are, that doesn’t change how much you are suffering, and opiods have no upper limit anyway, so what does it matter Doctors have a duty of care to their patients, and yours has FAILED. I can’t remember what you’ve told us about your doctor situation, but can someone here help you find one for this aspect of your medical care who actually knows how to do the job they are trained for? Wow, that pushed some buttons, didn’t it! Sorry if it came across as a bit of a rant, but I want you to know that your feelings are absolutely valid. It is so unjust that with all that you’ve been through, you’re suffering more than you should have to. Take care, Katharine.
Response:
Welcome back… Ronnie
– Hide quoted text — Show quoted text – I see Albert had already told you what’s been going on with me the last month or so. Major CNS (central nervous system) inflammation/involvement with the wolf winning most of the rounds. I have 900+ emails (from a lupus mail list I belong to) to read, and some from this group…you darlings…you know who you are I will get to them. It hasn’t been much fun, but I’m home and the weather is beeyootiful and it’s so nice to see the kids lying on the carpet playing Grand Turismo III.and the man being such a sweetheart. When I got up Friday morning there were notes all over…stuck in my keyboard…taped to the satellite remote…wrapped around my toothbrush…folded in my Sony play station….tucked in my tobaccy can, saying he loves me and is glad I’m here. I’m pretty lucky. Today the kids got my kitchen counters sparkling, I won’t mention to them that most of what was on the counters is now on the floor, it’s the thought that counts right? I sure would like to get better…wouldn’t we all. They tell me now that I may not regain all of my cognitive function. That really threw me. Not that I was ever the brightest bulb but even so. I don’t know if that means even if I try real hard to relearn/remember what I can’t now if I can ever get back to normal …I don’t think so. That’s what they are telling me to believe. I find that part frightening and discouraging, it seems I already try so hard. For a basically lazy person that takes a lot of effort:) The good news is few of my clients have left me thru this whole nightmare year and the ones that have…well I didn’t want them as clients anyway:) The ones that stayed have been kind and patient even tho my usual 48 hour turnover time in editing their websites is more like 7- 10 days now. Not one single complaint…amazing. I’ve read through the posts that my reader shows…I think it goes back 500 posts. Everything before that though I’ve lost. Is everyone still the same? No one died or anything I hope. If anyone had the time or energy to bring me up to date on important stuff I’d sure appreciate it. My doc still hasn’t changed my pain meds and they just aren’t doing the trick. My next office visit is in about 3 weeks, to discuss resuming the chemo treatments and I *need* to have a way to get through to him by then. No one deserves to have to live in pain. He is prescribing me some pain meds and I’m oh so grateful for them but between tolerance and my condition being worse I get only part of the day when things are bearable pain wise. Last time I tried to talk to him about it he cut me off with "You are too young, do you have any idea how your tolerance will grow by the time you’re 50? If your lupus continues as active as it is now? I don’t *care*! I don’t want to live to 50 if my life has to be like this. I know you can all relate so I don’t feel too much like this is whining. So I have a few weeks to come up with a way to talk to him. Well that’s long enough for this novel I missed Y’all. love, catherine
Response:
I see Albert had already told you what’s been going on with me the last month or so. Major CNS (central nervous system) inflammation/involvement with the wolf winning most of the rounds. I have 900+ emails (from a lupus mail list I belong to) to read, and some from this group…you darlings…you know who you are I will get to them. It hasn’t been much fun, but I’m home and the weather is beeyootiful and it’s so nice to see the kids lying on the carpet playing Grand Turismo III.and the man being such a sweetheart. When I got up Friday morning there were notes all over…stuck in my keyboard…taped to the satellite remote…wrapped around my toothbrush…folded in my Sony play station….tucked in my tobaccy can, saying he loves me and is glad I’m here. I’m pretty lucky. Today the kids got my kitchen counters sparkling, I won’t mention to them that most of what was on the counters is now on the floor, it’s the thought that counts right? I sure would like to get better…wouldn’t we all. They tell me now that I may not regain all of my cognitive function. That really threw me. Not that I was ever the brightest bulb but even so. I don’t know if that means even if I try real hard to relearn/remember what I can’t now if I can ever get back to normal …I don’t think so. That’s what they are telling me to believe. I find that part frightening and discouraging, it seems I already try so hard. For a basically lazy person that takes a lot of effort:) The good news is few of my clients have left me thru this whole nightmare year and the ones that have…well I didn’t want them as clients anyway:) The ones that stayed have been kind and patient even tho my usual 48 hour turnover time in editing their websites is more like 7- 10 days now. Not one single complaint…amazing. I’ve read through the posts that my reader shows…I think it goes back 500 posts. Everything before that though I’ve lost. Is everyone still the same? No one died or anything I hope. If anyone had the time or energy to bring me up to date on important stuff I’d sure appreciate it. My doc still hasn’t changed my pain meds and they just aren’t doing the trick. My next office visit is in about 3 weeks, to discuss resuming the chemo treatments and I *need* to have a way to get through to him by then. No one deserves to have to live in pain. He is prescribing me some pain meds and I’m oh so grateful for them but between tolerance and my condition being worse I get only part of the day when things are bearable pain wise. Last time I tried to talk to him about it he cut me off with "You are too young, do you have any idea how your tolerance will grow by the time you’re 50? If your lupus continues as active as it is now? I don’t *care*! I don’t want to live to 50 if my life has to be like this. I know you can all relate so I don’t feel too much like this is whining. So I have a few weeks to come up with a way to talk to him. Well that’s long enough for this novel I missed Y’all. love, catherine
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