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| | From:  Smile-Mom- (Original Message) | Sent: 10/22/2008 4:00 PM |
OK, I don't care if you need, want, or anything else to vent about anything at all, including me!!! Please do so here, if you have a vent it is better for you to let it out. If it is about me or Smiling it is better for all of us if you post it here!!! :) First vent- I have transportation to all medical appointments and 3 hours a week for personal errands. I am having so much trouble communicating with the company. They are getting my schedule wrong every single week AND have messed up my schedule and NOT picked me up at least 4 times in the three months I have used them :( :( :(. I am deaf (just incase any of you don't know) I can't call on a voice phone, they don't want to deal with the extra time to do relay, they do not reply to my emails. ERRRRRRRRRRR :( Whew thank you :) :) :) Who has the chair next? :) :) :) |
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I don't know how to manage my newly discovered super powers. I have discovered I am 110% invisible!!! HELP!!!! Betta |
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| | | From: jsr4711 | Sent: 11/16/2008 6:48 PM |
I think a lot of us here share the same super power Betta. It must be one of those fibro symptoms no one really talks about. Wish I knew a treatment for that one. Jacki |
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I seem to have missed Betta's new Super Power :( Can't find it please help :( Sorry :( is it being invisible? I have a major fear of being invisible, comes from many times of being treated as if I did not matter, if what I did, didn't matter, if what I said didn't matter, who I am didn't matter. I always fear I will go back to being invisible and that scares me out of my wits!!!!!!!!!!!!!!!!!!!! My vent for today is that I have a feeling that something is very VERY wrong, I just don't know what it is yet :( :( :(  |
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I may have a way of working towards a cure for it. Thursday, there is a Brown Bag seminar at lunch time at work about chronic pain. My manager alerted me to it, but I'm still undecided about going. It will mean coming home for a nap, getting ready to go downtown, attending the seminar, then hopefully unwinding enough when I get home to get maybe 4 hours of sleep before getting ready for work. But Thursdays are my "Friday" at work, since I'm off Friday and Saturday night. Why I think it may help is that I can maybe learn something about getting the point across to others that just because I don't look sick doesn't mean that I'm not sick. A pretty sweater or a swipe of mascara, blush, and lip gloss does NOT mean I am FINE!! If the saying, "You only look as good as you feel." is true, maybe I'm just trying to fool myself into feeling better, but trust me, it doesn't always work. I tried to hammer home how much fibro affects me at work yesterday. My coworker seemed shocked when I told her some of the things I did... 1. I had dental work this summer with NO novocaine! Yet, fibro pain generally brings me to tears. 2. When I had my hysterectomy 4 1/2 years ago, I used my morphine pump about half as much as they expected. I was taken off of it in 24 hours, and put on Percosets. I was able to come home a day early. When asked about pain, I became tearful about my back and neck, because of being forced to lie on my back. They said, "No, how is your incision and your abdomen?" I said, "Oh, that's fine except for when I have to roll over to get out of bed. Then it pinches a little." There I was crying about the fibro pain, but practically ignoring the post-surgical pain!! Stranger still was that the Percosets virtually eliminated that pain at rest, but did not TOUCH the fibro pain!! I would have to say the neck and back pain was at least 4 times the level of the post-surgical pain, until I was finally able to sleep on my side. 3. I had arthroscopic knee surgery in 1992. I believe I had the fibro back then, but didn't know it. Anyhow, I was back to work in THREE DAYS. I was given Tylenol with codeine as a pain reliever. I took only 2 or 3 of them, and one was the evening following the surgery. A second was because I flexed the knee, not thinking, to try to step up onto the bus on the way home the first night back. That did hurt quite a bit! When I was called by the surgical center the day after the surgery, I complained more about where they put the IV than the knee, because a student attempted to start the IV and did a miserable job of it. The nurse teaching her had to do it, and seemingly knew little more than the student, so I wound up with a very bruised, sore arm. My point is that I have endured some things most people would find very uncomfortable without much thought. However, the fibro frequently brings me to tears...sometimes for days at a time. What does that say about the fibro? The invisibility does not necessarily come from the fibro, though. It comes from when you post, and feel like nobody has read it. It comes from people that do not know you exist until they want something. It's those people that respond to your e-mail...or post...when you've asked 3 questions, and they answer one that's not IN the e-mail or post! LOL For example, I can ask three weather-related questions, and find out their favorite food! It's how someone at work can say "Hello." to somebody standing right beside me and not acknowledge me, and say they didn't see me. I'm over 250 pounds, so unless my clothes, skin, and hair all match the walls, (NOT LIKELY!!!) I am not buying it! It's those that, when you start a post, talk to the others that replied to that post, but do not adress what you have said at all. Betta |
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Mom must be wondering why she ever started this thread with me around. LOL Today I am bothered by the defeatist attitude many seem to have with the impending closure of MSN groups. We have a good 3 months left, but many are acting as though the groups, and the friendships they have made in them, are already dead and buried. What's worse is how so many are so upset about the closures, but so few are signing the petitions that are out there. 3 months and it'll be gone  ... How many of us have stayed with a group less than that amount of time (  ) or joined a group that didn't last that long? ( ) So, why don't we enjoy it while we can, and foster our friendships along the way? There's still IM, e-mail when it works, (because MSN isn't letting me send e-mails today  ) computer programs like Skype, free long distance on cell phones, and even good old snail mail!! We should NOT give up on so much because of MSN's decision!!!!! Betta Sue |
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I signed the petition several weeks ago. I was upset that my name was only somewhere around 230 or 240, when it was out there over a week when I signed. Maybe it was one of those deals where every so many signatures got sent, and then it started over again...I don't know. But that low number was discouraging to me. Betta |
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I agree and I am NOT giving up in any way shape or form :) I know that Smiling will not only survive but be bigger, better, stronger, then before :) Right Family :) |
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YOU SAID VENT!?! WELL HERE GOES, I AM SICK AND TRIED OF BEING SICK AND TRIED! THERRE ISN'T ONE PART OF MY BODY THAT DOESN'T HURT! I SAW MY DR. ON MONDAY AND HE SAID HE NO LONGER TREATS PAIN!!!!! HE'S MY RHEUMATOLOGIST!!! HE SAYS I NOW NEED TO ADD TO MY COLLECTION OF DRS AND SEE A PAIN SPECALIST!!!! BOY DO I HATE DRS!!!! THAT'S ENOUGH FOR NOW, THANK YOU SO MUCH!!!! TERI |
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I completely agree with you TAS!!!! I am so tired of being tired and so sick of being sick!!!!!!!!! Good to see you around :) :) :) |
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THANKS MOM! IT'S BEEN HARD TO GET ON LINE THIS PAST WEEK BECAUSE MY SON WHO WAS SUSPOSE TO START A BIG JOB ON MONDAY DIDN'T HAVE ANY WORK ALL WEEK! ( I'VE GOT MY FINGERS CROSSED THAT IT WILL START THIS MON.) ANYWAY EVERYTIME I WENT TO GET ON HE WAS ON! OH WELL SO IS LIFE,LOL. WAS SUSPOSE TO GO TO THE LUNG CLINIC TONIGHT FOR A SLEEP OVER BUT THEY CALLED AND SINCE I WAS THE ONLY ONE SCHEDULED THEY MOVED ME TO DEC. 6 WHICH IS FINE WITH ME. NO WAY DID I WANT TO BE THE ONLY ONE THERE WITH THE TECH!!! HAVE A GREAT NIGHT!!! TERI |
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Count me among those that are sick and tired of being sick and tired. Is it a sleep study you are having on December 6th, Teri? I absolutely hated having the glue in my hair from that. I had to go twice. The second time, I discovered on my own that working a good amount of conditioner into your hair while it's still dry, waiting awhile and then shampooing makes the removal quite a bit easier. It's a shame they are sending you to yet another doctor. To me, it's just another way of doctors earning more money and driving up insurance costs more. I was actually pleasantly surprised when my internal medicine doctor said he would do my routine annual gyne checkup, because most will not. Like you, I thought part of a rheumatologist's job was to treat the pain that came with the arthritis, fibro, etc. It makes me think of the one time I was seeing a rheumatologist. I had swelling at one of my trigger points, and she believed I had a cyst that needed removed...and referred me to a dermatology practice. Her SISTER was on the staff there. After telling me there was something like a 5 month waiting list, I tried another doctor. He told me there was absolutely nothing wrong, that if anything was there the antibiotics had taken care of it, and it was not a dermatology problem in the first place! I trusted him completely, as I had gotten a lot of good word of mouth about him. I feel the rheumatologist was just trying to drum up business for her sister, which obviously didn't need it if it took 5 months to see her. Then again, this is the same doctor that stopped in mid exam and asked me if I was really sick and in pain!! That's because I was cracking jokes while she did the exam. If I hadn't, the pain would've had me hysterical to the point I would've disturbed and upset other patients. Thank God I have a doctor now that accepts that and realizes it's my coping device. In fact, he welcomes it! Betta |
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HI BETTE, YES I AM HAVING A SLEEP STUDY. THANKS FOR THE WARNING ABOUT THE GLUE IN MY HAIR. I WOULD HAVE FREAKED WHEN THEY WENT TO DO THAT!! YES I HAVE TOO MANY BAD DOCTORS!!!! I SHOULDN'T SAY THAT, MY PC IS GOOD AND SHE HAS TAKEN OVER FOR THE HEART DOCTOR AND SHE RENEWED MY PRESCIPTION FOR PAIN MEDS. I JUST WISH SHE COULD HANDLE ALL OF IT. OH WELL, HAVE A GREAT NIGHT!! TERI |
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I completely understand the wish to have only one doctor cover everything and that be a good doctor, but there are so many reasons why it is better to have more than one. I had one GREAT doctor and he decided to stop seeing paitents and do research! Now that means I have no great doctor. If I had several great ones I wouldn't have lost everything. Does that make sense? I am going to have Honey do a sleep study soon, what is it about the glue? Why glue? |
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Hi Sis I agree about the Dr.s All my Dr.s are through the hospital and it's medical school. If I lose a Dr. like my GP is residents and they rotate there is always another Dr. to replace them. Also I have had the same attending Physicion for 20 years. So if there is a hospital or a medical school near by I suggest everyone try that. Now I know you are thinking residents I want a real Dr. but think about this they have more information about Fibros then the older Dr.s and there are still Dr.s out there who will say it is all in your head. The residents don't do that because they are aware of Fibro, and all it's symptons. Now for the Glue Sis. When you have a sleep study done they attach electrodes all over your body but mostly on your head. In order to make sure they are touching your scalp and will stay in place they use a glue like substance. Your hair looks very funny at first, but it will shampoo out. ow some good news. I just called the accounting office at the hospital My charity care has been approved for 100% of my bills. I have been trying to get this done since May. I am now covered from may 08 to may09 and all my open bills have been cleared. Yeah now I have to do this all over next May LOL.Well I have been rambling ((((((((HUGS)))))))))))))) to all. Sunflower/Jeri |
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