Hopefully my referral will be soon. I've been waiting for a month since having my blood test positive twice for lupus. It seems to be a slow process. At this point, I don't know what questions to ask the doctor. How can I best be prepared? I've read a lot of information and it is spinning around in my head.
At the present I am taking Zipsor and wondering if he will want to try something different. That scares me because of allergies and reactions I have with certain meds. The different drugs I've read about seem scary to me.
I really don't know how long I've had lupus. I've not been well for the last twenty years. However, I managed to teach school and help my husband who is a pastor. He has resigned to be home with me. It seems I am able to do less because of the pain, weakness, and bad legs. I use a walker. My mind doesn't feel old but my body does!
Honestly, I try to stay positive and not spend too much time thinking about my pain and inability to function as I once did. It is hard. Thank you all for sharing. I've already learned from you. And thanks for listening to my heart.
Sorry to hear you aren’t feeling well. I have had symptoms of lupus for over the past 13 months and finally getting to the bottom of it. I’ve had sun sensitivity for all of my life but it wasn’t till the last year that I really haven’t been feeling well and having more symptoms. It is quite a process, (to get a diagnosis) it seems! Sometimes its difficult to keep going we aren’t feeling well but stay strong! Its good that you the support of your hubby, which is great! I’m sorry I don’t know much about the drug you are on but I’m sure there are others on here that can help which is great. This site is so wonderful and there are so many lovely, caring people! Hang in there and stay strong! Hugs, prayers and blessings to you!
TracyA <3
I wish you all the best when your date finally arrives and being as you've been tested twice and results positive...just come out and ask the theumo what you do have...as your bloods alone will tell him, as we can't afford to be fobbed off.
The drugs to have alot of side affects but not all member's get them so try to remember that's it's all down to the individual themselves and if you have allergies like myself that must be stated and then it's for him to check up properly concerning a new drug if he wants to change what your on.
I'd actually write down a list and fire the questions at him, first one what you've got that's your main concern and also right down the symptoms you've been suffering like a diary and when they've occured and how long they've lasted and i hope your hubby goes to support you as mine does and wht i can't get out my mouth he asks.
Faye i don't feel old at 44 but i use a rollator, wheelchair etc to help me get about...it's what comes with Lupus and how bad it hits indiviuals systems...it can get you down i fully understand but you need to be strong and carry on.
Ann's given you to excellent sites to help you in preparing questions but the first one i do use alot because it goes into so much detail.
Thank you so much for your encouraging words. Yes, it has been a blessing for me to read of others facing the same issues. It helps to know I'm not alone. I did receive an appointment today for July 16. It seems far away but I am anxious for it to come. Hugs back to you! Faye
tracyA said:
Hi Faye:
Sorry to hear you aren't feeling well. :( I have had symptoms of lupus for over the past 13 months and finally getting to the bottom of it. I've had sun sensitivity for all of my life but it wasn't till the last year that I really haven't been feeling well and having more symptoms. It is quite a process, (to get a diagnosis) it seems! Sometimes its difficult to keep going we aren't feeling well but stay strong! Its good that you the support of your hubby, which is great! I'm sorry I don't know much about the drug you are on but I'm sure there are others on here that can help which is great. This site is so wonderful and there are so many lovely, caring people! Hang in there and stay strong! Hugs, prayers and blessings to you! TracyA :) <3
Just get yourself prepared like we've mentioned, some rheumo can be great but with mine as soon as i'm in the door he's waiting to get me back out but i don't give in till i get the amswers i want. xxx
You amaze me ! You have a gift of encouraging others. Thanks again for staying with me and encouraging me along the way. All I could do yesterday was cry from the pain in my legs. It really hurts my husband to see my pain. My church and friends faithfully pray for me. I too have a roller walker and don't know what I would do without it. Thanks for the advice for when I see the doctor. Actually I feel better since all of you responded. I hope you are having a good day...whatever, that means to you! Love, hugs, and prayers your way. Faye
Tez_20 said:
Hello Faye,
I wish you all the best when your date finally arrives and being as you've been tested twice and results positive...just come out and ask the theumo what you do have...as your bloods alone will tell him, as we can't afford to be fobbed off.
The drugs to have alot of side affects but not all member's get them so try to remember that's it's all down to the individual themselves and if you have allergies like myself that must be stated and then it's for him to check up properly concerning a new drug if he wants to change what your on.
I'd actually write down a list and fire the questions at him, first one what you've got that's your main concern and also right down the symptoms you've been suffering like a diary and when they've occured and how long they've lasted and i hope your hubby goes to support you as mine does and wht i can't get out my mouth he asks.
Faye i don't feel old at 44 but i use a rollator, wheelchair etc to help me get about...it's what comes with Lupus and how bad it hits indiviuals systems...it can get you down i fully understand but you need to be strong and carry on.
Ann's given you to excellent sites to help you in preparing questions but the first one i do use alot because it goes into so much detail.
Thank you so much for sending the websites. I look forward to searching them out and using their suggestions.
I tried to respond to you earlier, but obviously did something wrong. It means a lot to me that you took time to care and answer my questions, also point me in the right direction. I read some about your research on Vit. D and will be interested to hear more about it. Hopefully you are having a good day. Thanks for your prayers...Faye P.S. I am finding the sites very helpful! Ann A. said:
Dear Faye,
Yep lupus drugs are almost as scary as lupus. And boy do I understand about the medication allergies. I will remember your heart in my prayers. And here are some questions to bring to your new physician.
It's not such a gift of encouraging other's, it's mainly serving 26yrs under differnt consultants you seem to know what to expect either an excellent outcome or where you know you won't get no where.
You don't want to be frightened at all just turn up and preapre yourself like we've all mentioned and work from the links Ann's given you...because she's a lady in a million who's done a life time with lupus also like myself but i only found out 5yrs back but had it all my life like i told you...all that was due to not running furthur tests, else i could have been treated earlier instead of things progressing like they have.
This may sound soft but when my legs are really painful and the one is playing up bad now, i get my hubby ste to rub my legs slowly up and down and you would'nt believe the release and good feeling it gives on the pain and muscles, you could always ask your hubby if he minds.
I'm glad we've all helped one way or another and a good day to me will be when an "Angel" casts a magic wand lol...just joking as i know that won't happen.
When my sister has a Reumathologist appointment she goes with our mother and me, so we can ask everything about her Lupus and her drugs. We also write some questions between each appointmen to not forget them... (with my sister's Lupus fog and our stress, we easily forget some things).
And you know what? WE ASK EVERYTHING... even if we've read and know about a drug or a treatment, we ask, ask and ask.... why, when, how, how long, does it hurts and a long blah blah blah.
We try to be total informed about everything (sometimes I think all the doctors might hate us because of all the questions we make hahaha)
I really did smile at your comment to Faye about ask ask ask...because that's been me over the years wanting to know everything inside and out and besides that if you don't ask, some doctor's fob you off quick.
You ad your mom do a fabulous job with supporting your sister....she's a lucky young lady. xxx
Thank you so much for taking the time to respond to my question. You give good advice and I have my pen and paper ready to start putting down the things I want to discuss with him. I was feeling guilty about all the questions I wanted to ask....no more! Thanks for the encouragement. Trust your sister is having a good day......
pinkycito said:
Dear Faye,
When my sister has a Reumathologist appointment she goes with our mother and me, so we can ask everything about her Lupus and her drugs. We also write some questions between each appointmen to not forget them... (with my sister's Lupus fog and our stress, we easily forget some things).
And you know what? WE ASK EVERYTHING... even if we've read and know about a drug or a treatment, we ask, ask and ask.... why, when, how, how long, does it hurts and a long blah blah blah.
We try to be total informed about everything (sometimes I think all the doctors might hate us because of all the questions we make hahaha)
I have had symptoms of lupus for over the past 13 months and finally getting to the bottom of it. I’ve had sun sensitivity for all of my life but it wasn’t till the last year that I really haven’t been feeling well and having more symptoms. It is quite a process, (to get a diagnosis) it seems! Sometimes its difficult to keep going we aren’t feeling well but stay strong! Its good that you the support of your hubby, which is great! I’m sorry I don’t know much about the drug you are on but I’m sure there are others on here that can help which is great. This site is so wonderful and there are so many lovely, caring people! Hang in there and stay strong! Hugs, prayers and blessings to you!
<3
