HI everyone - Well, I got a good dose of reality a few days ago. I was walking down the hall to go downstairs to get my mail and I passed an apartment on the first floor where there was a lovely looking woman moving in. She was directing the movers where to put her furniture. She was in a wheel chair and clearly in pain. I smiled at her and introduced myself. A couple of hours later, she was outside taking advantage of the warm weather and I sat down next to her and started a conversation. At one point, she was trying to lift her right arm to reach for a drink on the table next to her.
She was wincing in pain and I got the drink for her. I asked her if she was okay and she smiled and said that her body was hurting and that she could only stand and walk around for a few minutes at a time. I expressed my concern and she asked me if I had ever heard of Fibromyalgia!!! My heart just dropped and I told her that I was diagnosed with it about 30 years ago. I couldn't believe this was happening. Apparently she has been in a wheelchair for about 4 years now and she is 65 - a year older than me. We talked for a long time and took down each other's phone numbers. Both of us were excited to meet each other and to know we really had something HUGE in common. Her name is Anna and she is originally from Germany. Has lived in the states for about 40 years now.
Yesterday, she invited me over for lunch and I offered to bring something. We chatted for hours. I told her about the Fibro website and how much I enjoyed communicating with those with my illness. Well, she is going through the same thing that we all seem to be struggling with - and that is trying to find a good doctor to help manage her pain and be compassionate of what she is going through.
Sadly (this brought tears to my eyes when she was sharing it with me), her family has chosen to separate themselves from her, not having the patience to deal with all she goes through. Everytime I hear something like this - it just makes me so angry and there is a level of extreme frustration and annoyance that goes along with it. Anna is pretty much alone and she told me she had many friends, but once she had to really slow down and not be able to go to all the events she would be invited to, they lost patience with her. She has 4 children, of which just ONE is barely tolerant of her illness. Also, like me, she doesn't have the chance to see all her grandchildren either. I will never adjust to the insensitivity of others!
I know that Anna and I will be good friends. I now have two wonderful things going for me. This great website and having someone with Fibro living so close to me. Was it meant to be?? I am beginning to think so! Love, to all! Laurie
Laurie, I think you are one" Lucky Lady". You happen to be at the right place at the right time. Just think this could be your best friendship ever. I think it was fate. You need each other just as we all need someone in our life to understand this thing called Fibro. I am really happy for you and Anna. Keep us posted... Hugs, Robin
Hi Robin - yes, I guess I AM lucky!! I hope and pray I am never in the position Anna is in, as far as being in a wheelchair - but there is always a possibility. As time goes on - my Fibro is getting worse and getting up in the morning with the horrible stiffness has increased in pain. I have been on a waiting list to see a new Rheumy - and finally her office called me yesterday and will set up an appointment soon. Once I am established - I won't have problems making appointments. I had seen a new Rheumy last October and he was just the most arrogant prick I had ever encountered in a doctor. I told him what I thought of him and walked out of the exam room in tears. I felt so hopeless and helpless, because I have been struggling for years to be understood and to be pain free. Sometimes I get to the point of just giving up and coping with the pain 'as best as I can.' But this option isn't good enough for me and I will continue to forge ahead. Laurie
I hope the new Rhuemy is better. I have been lucky that mine specializes in Fibro but better yet I have been seeing on of the nurse practioner's that has Fibro and totally can relate to what I am going through... Hang in there please and when you do meet the new Dr. let us know how is went, xoxo
Whether it was "meant to be" or not is irrelevant, what is relevant is that you have met her now, she is in the same position as you in many ways and you have someone whom you can talk to face to face, lucky is not the right word really because no one is lucky to have fibro, but it certainly is a way of making the best out of a bad situation. I am lucky enough to have a friend who lives a couple of hours away from me with fibro and I find it so glad to have a face to face talk. Lets just hope you get along well and can help each other for time to come.
Mike - I didn't mean I was 'lucky' in the sense of Anna having Fibro. You said you were ''lucky to have a friend who lives a couple of hours away from me with Fibro.'' It's the same thing I said about Anna. I would never wish Fibro on anyone. Anna and I will definitely have a lot in common and I am grateful for this. Laurie
Make sure you give her a gentle hug from everyone on here and let her know that she is not alone. I did know what you mean so do not worry. *hugs* Mikex
Hi Lyra - No doubt, my friendship with Anna will be very special. Believe it or not, I haven't really met anyone with the illness. Strange! Besides the Fibro, one of the other things that we have in common is the separation of family because of what we go through. As I mentioned before, to the group - making the decision to pull away from people I used to be friends with was a hard thing to do. I had so many wonderful memories with them. The most hurtful, which I will never understand, is a friend of mind, Judy, whom I have know since she and I were in high school - at 14 years of age!! That's a long friendship! 60 years. She lives in California - me in Nevada. We double-dated, went shopping, were there for each other when there were deaths in the family, divorce. All kinds of things.
The last time I saw her was a couple of years ago. Judy had come up to visit me and I was SO excited. However, I was in a bad way at the time with my Fibro. She saw me at my worst and was shocked. Her reaction to what I was going through wasn't good and I had a feeling that she would pull away. She did. It made me so sad after all we had been through in the 60 years as friends. This friendship in particular hit me hard. It took me quite a while to get over it. So, maybe, this wasn't a friendship after all?? Good friends don't abandon others. When Judy left to go back to California, I never heard from her again. I tried calling her 3 times, but she never returned my messages. Hugs xoxo Laurie
HI Robin - the new Rhuemy also specializes in Fibro. I am most anxious to see her - but I can't tell you how many times I get my hopes up, only to have wasted my time. My son, Jason will be getting married in the near future, and my biggest wish is to get the Fibro under control to the point that I can be relatively free of pain and just have a wonderful time during that day. It's funny, but the other day I was 'obsessing' about 'what shoes to wear for the wedding!' LOL I used to LOVE heels - but will have to rethink this VERY carefully. I don't want to make my entrance down the aisle and fall flat on my face! Maybe I can handle low heels???
My nurse, Megan, is wonderful. She handles all my Meds and really listens to what I have to say. She always strives to make sure that I am being taken care of and has been through my tears, frustration and anger over my illness. Because I am on Medicaid, she has to work hard in finding me the specialists that I need to see. So far, Medicaid has been pretty good to me- especially in okaying the Meds I need to take. Hug! Laurie
Hi Mike - I told Ann about this website. She will be setting her computer up soon and I think she is really interested. The first thing I do in the morning (this is when I have my worst pain), I get on the website and I start to feel better mentally almost immediately. I told Anna this and she told me that this is what she needs to do too. I am anxious to set her up with all of you. Laurie
Laurie, your post almost brought me to tears. My mother was diagnosed with fibro about 12 years ago after a fall at work and which led to her disability. She too is only in her early 60's and I have seen a bright, intelligent, beautiful woman become an almost invalid that cannot walk without assistance, and not even be able to sit in a chair very long without horrible pain. I tried very hard to understand her condition, and it has been hard on my brother and I watching her descent into a miserable existence (she also has other problems we won't go into here, but the fibro has not helped at all). About 10 years ago after a major surgery I started suffering from chronic pain; knowing what my mother has/is going through I have fought the fibro diagnosis tooth and nail. However, the 'fibro fog' and other symptoms have made me come to terms, and I have finally accepted that I too have to learn to deal with this condition. The isolation from family is the saddest-like I said, my mother also suffers from some other issues that have caused her to be isolated from everyone but her husband and myself, my brother tolerates her only time to time for family get togethers. Your post has made me decide that I have to try and make sure Mother has a strong support system around her; I will try to get her on this sight if she will.
My belief that fibromyalgia, among many other disorders similar, 'runs' in families. My grandmother was considered a hypochondriac, and my aunts and uncles (and believe it or not my mother) used to talk badly about her, stay away from her, and call her a 'pill head' almost until the day she died from alzheimer's. My grandmother was diagnosed with RA, but never fibromyalgia. My father had MS, I have two cousins with fibro, and my daughter has autoimmune hepatitis. Hence, I truly believe these disorders are not only familial, but that fibro is connected with autoimmune.
I am so glad you have found a friend, you both will be a blessing to each other!
Hi Laurie it would be great to be able to support someone close by who has fibro, and know that person would provide you with support and friendship. I hope you and Anna spend lots of happy moments together, with lots of laughter
You will be great support for each other! Very exciting. Someone who understands. I have a feeling Lyra is right, you will become each others family.
I don't understand why people can't be more compassionate. Why don't they believe all of us? I have two very good personal friends with fms/cf. I also have an understanding husband and my kids believe me. I can talk to them. Why on earth would a family think that deserting this woman is the answer. It's sad.
BUT! Now you guys have each other. That is a very good story, Laurie. Warms my heart!