Sorry to hear that you have all been feeling so terrible. I think it is flare time again - season's starting to change. It has been cold and damp here, and caused me to go into a flare as well. Darn it all - wish there was a magic cure for all of us.
Everybody take care of yourselves and come back when you are able.
Glad to see that you didn't let this thread die. I'd miss you guys! Know what you mean about the flare ups.....been muggy around here too. Some days I feel like I'm mentally running on wet sand.
Angel, sorry to hear it's been so rough. Hope you go into see the doc. I think I would have cried if that happened to me.
Semi good news today. Finally, got the girl on the phone and she's sending me the referral for the surg. Then I called the surg. and I have an appointment on 9/17. Really threw me. The other guy had me schedule for an informational meeting first...the appointment was 6 months in advance! I didn't think I would get in so fast. Guess that's a good thing. I know I shouldn't borrow trouble and this could dramatically help my back problem.....just scares me, you know what I mean?
No big plans for the weekend. The cleaning fairies seemed to have formed a union and are out on strike.....tons of laundry and housecleaning for me. Hope everyone stays cool and is feeling well.
Just a little drunk, still....after treatment yesterday! I couldn't find anyone available to drive me, so, I took myself. I didn't take any chances with hurting others by being sleepy, or "out of it". I didn't take anything, except one Benadryl. I decided if I had to take any chances, it would be with me, & not someone else. But, I didn't have any problems, this time, so it all worked out. Sometimes, we just don't have a choice, you know?! Thankfully, the nurse didn't ask me if I had a driver. (she usually does) DH told me if I couldn't find someone, to call him, he'd be working nearby yesterday. So, I felt better, knowing, if I got into trouble, I could call him.
The Dr. said I had a bad viral infection last week, & it triggered a flare up...so, I guess I had good cause to feel so bad. It's probably going to take awhile to get strength back like I need. Bluet, to answer your question...the results after treatments are different with everyone. For me, it usually takes 2-3 days to start feeling better. The 2nd & 3rd week are pretty good, then the 4th week is fair, then the 5th week I start feeling the Remicade wearing off...generally with fatigue first, then pain & stiffness...then it all worsens until my treatment, which is 5-6 weeks apart. There was a young man (36 yrs old) taking a treatment the same time as me yesterday. He looked so strong & healthy. He was talking about the fatigue, pain, & stiffness, & how his buddies couldn't understand. Especially when he had to rest so often at work...then laying around at home & sleeping. They think he's lazy. At least that's how he felt. I talked to him about how most people don't understand RA. That it's not just arthritis, but, an auto-immune disease. I felt sorry for him.
Young Grasshopper...glad you're getting to see the surgeon, finally. Please keep us informed. I DO hope they're able to help you. I know what you mean about the "cleaning fairies". Been lying around a couple of days...so they thought they would too, I guess.
Iamgonnadoit...good luck with your appointment. Hope all goes well.
Joanne...Hope your sister is doing better. Still praying for her.
I've gotta post a couple of the pics I made at the beach, when I get a chance. It was so beautiful there. Congrats on getting a new DIL!
Happy Canuk....don't let us die out.....we want to stay....just all had flares, or problems. Seemed to be catching among us, didn't it?! I'm a little better...maybe on the mend!
Deb - glad you finally got the appt. with the specialist. It will be good to go and learn what you need to know to make your decision. Hope you get your housework all done, with or without the help of the fairies
Angel - Sorry to hear that things have been so rough. It has been a bad pain summer this year. Lot's of humidity and we don't usually have that. I don't have RA but rather OA and FM. It is a common combination and it sure does have it's moments. I hope that your meds will kick in and leave you feeling better by next week.
Laura - where are you? You were going to visit your grandson and you never came back!
Well, I am off to bed. Hope everybody has a better day tomorrow.
Hello Everybody...I hope you all start feeling better soon.. I haven't got the DIL yet although it is in the works. My son gave her a ring. They are talking about April. My Daughter and I are trying to get them to make it sooner. Yeah, We should mind our own business!!! It is still really hot down here.I worked in the yard a short time yesterday. One of those darn tree ants got me 2 times. I have huge welts(3 inches around) and the constant itching. I am really allergic to bug bites.
Grasshopper. Glad to hear you got your appointment.. Don't be afraid..
Angel- It is still too hot for me to walk to beach. I use the T/M for this time of the year.
Happy- I am waitinf for that time of year when it isn't too hot or cold.. We have another storm heading our way.. I hope it just gives us some rain. and dies out. The last one has caused so much grief..
You all have a great weekend. Joanne
Don't know how it is with you but Long Island is hot! hot! hot! today. I had hoped that it would be a cool weekend. Weather was pretty mild on weds. Starting thinking about making a some ziti or stuffed shells but didn't have the ingred. Now I have em, but it's too hot to cook. Maybe it's God telling me something.....but I've been craving it for days now. Wonder if anyone will mind if I cook at 3 am? lol.
And no, the cleaning fairies aren't getting any! lol.
Glad to hear that you got your treatment Angel.....just wish there was someone to take you. I know what you mean about needing the treatment but not wanting to bug someone for a lift. Thank God, I was able to get my family to take me for epidurals when I needed them.
Joanne, sounds like you've got big plans to make....hope the wedding comes together with out a hitch (other than the wedding!) Geez, me and the bad puns.......I'm blaming that and my hair on the humidity .
Hope everyone has a great weekend. Great to see you Happy Canuck
I've just gotten back from the 1st meeting of the SjS Foundation Dallas Cahpter meeting. It was a very nice informational meeting. There were about 120 people there. Of course when anyone thinks of Sjogren's what they think of is the dry eyes and the dry mouth, well, it's so much more. The one thing that the doctor said that really stuck out in my mind, was that the pain with SjS, Fibro & RA were almost the same, but the big difference in SjS was that there were not trigger points pain as in Fibro, and not deformitiy of the joints as with RA.
Other than that I don't know much. I have good days and I have bad days, like I'm sure all of you do. I have got to get back to looking for graphics. You all make my posts seem boring.
Goodness...ageoldie....I read up on the disease. It sounds like you have a lot of problems, also. So sorry. I have "dry eyes", the mouth ulcers, sore throat & hard to swallow....but, all but the eyes are being thought of as side effect of the Methotrexate. I was switched from folic acid to Leucovorin, which I take once a week. 24 hours after taking the Methotrexate. I sure hope it helps. The mouth ulcers are very painful. Anyway, Hope you get better. Glad you have a group to meet with. I don't have any place around here, & no one who really understands, or has it...except for the other patients at the clinic, & we really don't know each other. I meet a new person at each treatment. That's one reason I'm so glad we have this thread. We all can whine & vent all we need to, because we all understand.
Young Grasshopper...what is Ziti, & stuffed shells? Sounds like something I'd be interested in. It's hot here, too. Causing a lot of stormy weather.
Joanne...I understand about it being too hot to walk on the beach...but, I hate treadmills. Guess I just wouldn't do anything. My DH thinks he's helping me....found commercial on TV for exerciser where you put your feet on it & "walk" with it. I knew it was useless to try to explain that I could walk outside just as easy....just hurts too bad with RA. So, I just told him to order it for me if he wanted to. I'm sure he never will. Does a lot of talking, like that, which never gets done.
Happy Canuk...thanks for the good wishes. I'm sure the meds will be kicking in soon. I'm already getting over the treatment, so that's a good start. I may try to go to a wedding tomorrow, if I'm strong enough. The AV Engineer at the TV Station is getting married, & wants us all there. We gave him & future wife a shower at the station last Saturday. It turned out very nice.
Hope you're feeling well this weekend.
Hope all of you have a good weekend.
Last edited by Angel-lover; 08-28-2004 at 11:41 PM.
Good Morning...BORING!!!! My notes must really be boring you all. I have never learned to do the graphics. I told my sister when she feels better ,now that she is retired, she will need to give me some lessons.My daughter put a system on here to help me. I still can't get it right.
My life right now is down in the dumps. I haven't had a real vacation in over 5 years and don't see much hope in the future. I did go to AZ. last April and had a wonderful time. But I am talking about the kind of vacation where I go to a beach where there are no phones, not many people, and I just watch the sunrise and sunset,go for swims ,walks and read.My hubby doesn't want to do much more than watch T.V. and sleep.
Enough of my whinning! Have a Great weekend...Joanne
Sorry to hear that you're down in the dumps Joanne.....shame you can't park Hubby in front of the TV that's in your private cabana on a nice beach . I've always wanted to go to one of those resorts.....sort of like the one in Waiting to Exhale.
Angel......ziti and/or stuffed shells are italian food. Basically, pasta cheese and sauce. Real comfort food for me.
Hope everyone's feeling better, today. I'm a little better...at least stronger.
Joanne...your posts ARE NOT BORING! I missed you sooo much when we lost track from the other thread. I always look forward to your posts. Sure the graphics are nice...but, they don't say the personal things we need to hear from each other. Yes, you do need a vacation, like you described. We kept our cell phones close by, but everyone knew to leave us alone, except for emergencies. My DH isn't keen on vacations either. Well, in a way, he is....just gotta remind him sometimes. Maybe yours just needs a little nudge.
Young Grasshopper...that pasta sounds good. How's the 10 lbs going? I've lost 3 lbs, but, I seem to need to lose much more! I feel like I'm in a bad dream...my clothes are all shrinking!!
Posting a few pictures of our vacation:
DH & I WENT ON A SMALL CRUISE TO SEE THE DOLPHINS....REALLY ENJOYED THE TRIP!
OK...HERE'S THE COMEDY...WE'RE IN OUR SWIMSUITS!!
REMEMBER ME GOING TO TEXAS? THIS WAS ON THE PORCH OF MARY FAY JACKSON...SHE LIVES IN THE HOUSE HER GRANDMOTHER USED TO LIVE IN. SHE'S A BIG STAR ON GMT (GOSPEL MUSIC TELEVISION), BUT, ONE OF THE SWEETEST PEOPLE I'VE MET.
OH YES, I FORGOT THE PIC DH TOOK OF ME WHEN I WAS STROLLING ON THE BEACH....HERE IT IS!!
Angel- That looks like my kind of beach.. You look very nice in your swimsuit. All the nudging in the world would not get my hubby in a swimsuit and to the beach. He has gone in the past when we went with our daughter to St. George island. He stayed indoors ,watched tv and only took his shoes off when he went to bed.Lately he stays home and I go with my family.. I am going to SRD in Daytona Beach in April if he doesn't cause too much static to keep me at home..It is a TOPS convention..He is getting older and just doesn't want anything to change in the daily routine..
Dr. appointment today.. I hope my col. was ok. I don't want to take any of the meds. I have been really feeling pretty good.. I sometimes wonder why we go to Dr. every 3-4 months.. I guess he needs the income too.
Bye for now...Joanne
Angel - so glad that you are starting to feel better. It is the pits to feel so awful. Loved all your pictures. Like Joanne says, you look good in your swimsuit. I feel like I could just walk right out into the water. Love the ocean but don't get to it very often, as it is a long way from home
Joanne - hope you are feeling more "up" again. You have had a lot of worry the past little while. I am glad your sister got back home. Hey, your posts are NOT BORING!! I miss you when you don't post.
Deb - Did you get your Ziti cooked? It is not hot here, that is for sure. Fall has arrived. I love it - nice brisk mornings and mellow afternoons. Hope it hangs around for a long time. It's just that 5 months of winter that is coming, that I dread (until it gets here, then it's ok)!
Ageoldie - I want to go look up that disease and do some reading on it. Is it the one with the cold hands and feet as well? Well, I will find out. Glad you have a support group.
Not much on my agenda today. I wonder where Laura is? Hope she isn't have computer problems.
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I'm a little better...maybe on the mend! 
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