I've been feeling tired, which is the same as it's been for two years since my cancer treatment shortly after Sjs dx. Well, I called my rheumy's office last Tuesday and asked for someone to call me back. I am 75 miles away, so it's just not across town. I waited a few hours after I left voice mail (no one ever answers in person) and called again. I got an answer that time and they assurred me someone would return my call by the end of the NEXT day (Wednesday).
Well, no one called me, and I have voice mail so they can't say no one answered. I was ticked off that I'd called on Tuesday and this was the following Monday. I wanted to wait through Friday just to see if someone would call at the end of a busy week. When I called yesterday (Monday) I left voice mail again (what else?) and droned that I have waited about a week for a phone call. I also said that I "really, really, really, really, want Dr. B to call me back. Well she must have got the message first thing this morning as she called me at 10 am.
She started asking me what was wrong. Heck, I've forgotten why I called her. I started to repeat the fatigue etc and she said "I have to take care of an emergency, I'll call you right back." She called me back within a few minutes and we continued and she said to come to her office tomorrow, which will be Wednesday and a clerk will call me with an appt. They called back with an appt of 11:30 a.m. OK, fine. Well, about 10 minutes later, we got a call saying that was a mistake and could we come at 8 am . So-we'll be up at 5:30 and leave at 6:30 and be there at 8 am. I like this dr, but am getting mad at the office staff.
Hi Lucy,
Wow, don't you just love staffs? Good luck on your appointment and I hope that the rheumy can figure out what is making you feel so run down. But I'm sure glad to see that the doctor actually does call back when she knows about the call!
Hang in there and I'll keep the digits crossed for you!
Take care -
Patze
Great job in persisting! I hate that you had to go through all that and wait and wait. For me that just adds to stress and I know that does not help me. I hope you have a great appointment!!
Missy
Good luck with the appt. Lucy, I'll say a prayer that all goes well and you get some REAL answers after traveling that long distance.
Wouldn't you just love to walk up to the person who put you off and smack them up side their head? ;D Boy I sure would. I know they are busy, but that's no excuse for rudeness and that's all it is. Next time, tell them it's an emergency. That way they will listen the first time. ;D
I really feel your frustration, and I pray all goes well for you tomorrow. Please let us know how it goes.
Hugs, Pooh
Hi Lucy
Good for you for persisting. I smiled when I read that you'd forgotten why you'd called when you finally got to speak to the doctor! That's so typical of us Sjoggies, isn't it?!
How did the appointment go? I hope it was worth the early start and the long drive.
Thinking of you - Chickpea
We got to the drs office at 8:04 a.m. and left at 11;30. I was prepared with food and pop and a hubby who is understanding. I saw the dr whom I really like probably a total of 5-10 minutes. I also saw the PA who flubbed up the other calls and not getting back to me. The dr told me that she got after the PA for the incident. The PA apoligized and I asked her if "she got her butt kicked.?" She said "yes" and we laughed.
My case is not really an easy one because, for one thing, I had cancer right after the Sjogrens diagnosis and it's really hard to separate the two and the side effects from each, meds, etc. I'm also having problems with weak muscles in my legs and have for several years. Also I need a new knee replacement for the one I have that is 7 years old.
The doc came up with the idea that I might have Fibromyalgia also. I think she just wants to really see what's going on with me and not leaving any gates closed. I read some stuff on Fibro. She started me on a new drug Savella. They said it's only two weeks on the market. I need to Google this and find out more info. This is to help me get some decent sleep. It's not a sleeping pill though and until I find out more info, not sure. I have to start it slowly and then go up in dosage. I have to go back to rheumy in 4 weeks. I think she is keeping a closer eye on me. Lucy
Lucy, I am glad to hear that you got some place---finally. I know that you haven't been feeling all that good the past few months and I would say it is time for a 5000 mile check up. LIke you said---between the cancer, sjogrens and meds how the heck do you know what is going on.
Your rheumy does sound like a great gal. It is the pits having to drive that far and I do it every month once if not more to see some of my specialist and get my infusion. Until hubby or I can't drive and the government takes all our money and insurance I guess we will keep on driving that far. It takes so darn long to find a good doc that you just hate to give them up. I aways say that going to the doctor is our social life cause that is about it other than our kids anymore!!!!!
Let us know how things go. Darn, seems like an artificial knee should last longer than 7 years!!!Irish ;D
Hi Lucy,
I am so glad you have such a good doctor who realizes that she needs to watch you a little closer. Hopefully now the PA will not let your calls go without returning them too. It's nice that you both had a good laugh about her getting her "butt kicked" for it.
I sure can relate only I went through the breast cancer diagnoses, and radiation for eight weeks, the year before the Sjogren's diagnoses. Then I got the Fibro diagnoses, then the skin cancer. I still think all that radiation triggered the Sjogren's symptoms. The radiation takes so much out of you, the fatigue from it is amazing. I look back on it now and can't believe I managed to go to work every day. When you take all the fatigue from the radiation, then add the fatigue from Sjogren's and Fibro, gee whiz, it's a wonder we can still walk around. Like you said, it can be difficult to separate the side effects from everything.
Of course, I have my own theories. I think the hit to my immune system from all that radiation is responsible for alot of this mess. Although, recently I have a couple of new nasty diagnoses that I can't blame on the radiation, lol.
A good doctor is so hard to find, I'm glad you found yours. Good luck. I hope that new med works wonders for you.
Hugs,
quig
Quig, we are practically twins, except perhaps not in the right chronological order! I had been really sick physically for months, maybe a couple of years with my dry eye symptoms going back 7 years! Well, I know how that started and it was with Lasik surgery. I can't tell when the Sjogrens started working on my eyes--before the surgery--after the surgery--and how long after? With the diagnosis and start of medical treatment for Sjs, I began to feel better.
Then 6 months later the b. cancer diagnosis AND skin cancer diagnosis 4 days apart. I had lumpectomy surgery (no big deal) and stopped my methotrexate for the time I did radiation. I swear from day 1 of radiation that I could not do a thing. It was all I could do to manage a shower, get dressed and go 5 miles to radiation. Many times hubby would drive me. I have not been able to get off my duff since. I stopped going to my 'beloved' water aerobics. I just couldn't pull it together to be there by 11 a.m.
Now, she thinks I have fibro too. I think I'd better really "rally" my muscles into some kind of action. I have so much support from hubby--he is the greatest. I have been missing my volunteer Fri afternoon with "my boyz" at the aviation zoo. I'm posting this so I can take a look at it and really dig my toes in and give her the gas. Oh, that makes me tired. I will get off the couch/bed and "get er' dun." I will......I will........I will.....Lucy
Wow Lucy, we ARE practically twins. I now think I was nuts to drag myself into work every day during radiation. The reason I had to go for eight weeks is because my skin turned pink on the very first day, something the doc had never seen happen before. So they had to lower each dose and I had to go longer. I swear I even got a little brain fog from it. Now when I go to the dentist and they put the lead thing on me to protect me from the radiation, it almost makes me laugh.
I'm sorry you have had to deal with skin cancer too. Just once it would be nice to go to the dermy and have a clean appointment. Fibro can be a real pain, no pun intended. It can sometimes be hard to tell where the Fibro symptoms leave off and Sjogren's begins. I have heard good things about Lyrica for Fibro and I'm sure your doc will make sure you are well taken care of. I think one of the hardest things about all this was having so much hit us so close together. It makes you want to ask, "where the heck did all this come from?"
I believe you have the motivation to do the things you want to do. Just be careful and start out slow. I have to remind myself of that all the time or I really feel it. ::)
Take care. I hope you have some good weather up there so you can enjoy the holiday weekend.
Hugs,
quig
Wow, ladies, you are amazing! And you went to work while getting radiation treatments Quiger?
I sure hope that you get back to the water aerobics soon and back to your "boyz" soon!
I know Fibro is a pain in the ... ;), but you've come through so much already, and Lyrica does seem to help.
Patze
OK, a little followup here. I got my lab results in the mail today. Normally I just glance at them and nothing is out of the box and I figure all is well, otherwise the office would call me.
Well, I looked at my report and it said in bold. ANACHOICE SCREEN POSITIVE
ana pattern speckled
ANTINUCLEAR ANTIBODIES 1:320
I called the office and left a message for a call back. I got the callback and I asked about these bolded items and she explained I was in a "flare." Well, really, that's why I went to the dr. Why didn't they call me and mention this stuff? This stuff does not normally show on my labs. I think since I was diagnosed this is the first time.
They also said I was really low on Vitamin D and will mail me a RX for that. Carnitine was also low. Do others labs usually show up with bolded items like mine did this time? I have felt like crap for almost the whole two years I've had this stuff and am on all the recommended meds. I will start these new things and see what happens.
Lucy
Hi Lucy,
My lab puts the results in bold if they fall outside the normal range. They also have a summary at the end of the report listing all the abnormal results together and what the normal ranges are.
I hope you start feeling better!
Erin
Same with mine Lucy, anything outside of the normal range is highlighted.
I'm really glad that you have a copy though, that sure helps with other doctors believing you.
And I'm so glad that you got your vitamin D level checked, and that is great that your doctor has called in a script for you. Is it the 50,000 units by chance?
Hang in there and I hope that you feel better soon too!
Take care -
Patze
Patze, I think it is that amount. I take something and after a week, I have my blood drawn for a level. I did this once but it's been almost a year ago. I forget actually.
Hi Lucy,
You get a blood draw after a week? Hummm, I get mine redrawn after taking the 50,000 after six weeks. Interesting.
Patze
Patze, I will wait until I get their instructions. I don't really remember the other time. Lucy