Feeling alone in Moore, OK

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by TiffanyT82, Jul 17, 2013.

  1. TiffanyT82

    TiffanyT82 Member

    Hi all, I just wanted to introduce myself. I'm 30 years old and was finally diagnosed with Fibromyalgia about 2.5 years ago after years of testing. I haven't been able to find many doctors in the area that treat Fibro, and the one I had I just was not comfortable with so I quit getting treatment about 6 months after being diagnosed. I am currently in the middle of the worst flare I've ever had, and I'm frustrated. In the last 5 years I've been diagnosed and treated for thyroid cancer, endometriosis, Fibro, and countless other little goodies. Thankfully, I have a husband that is extremely supportive, but I keep retreating farther and farther into a shell of self-disgust. I don't feel that I can talk to anyone, because I honestly think they believe I am nuts-everyday is something different, so I can't say that I blame them. I hate constantly putting this on my husband so I try to put on a brave face, but I'm exhausted. 2 kids, work, and nursing school are about to kill me, and I feel like I'm constantly letting my family down. Sorry for complaining, I guess I just needed to vent somewhere that had people that would understand. :)
  2. tamsyn

    tamsyn Member

    Hey, don't be so very hard on yourself. You are leading an incredibly busy life, and being responsible for so many other people's well being. Maybe you need to start taking care of yourself? Be your own best friend! This illness can be very isolating as not many people understand it. I too pushed myself very hard as a self-employed, sole support parent...for years, I sort of denied my illness and tried to hide it. I didn't want it to be a 'burden' on my loved ones. But you know what happened? I lost almost everything due to the illness -- and my loved ones still loved me. So ease up on yourself, get rid of any guilt trips too -- you did not ask to have this illness. It does not make you a lesser person. It makes you braver and stronger because you are still taking care of others even though you are suffering. Wow! Don't you think that's impressive? And your dear hubby married you for 'sickness and health' so that's just part of the deal. Please nurture and care for yourself. You are not alone and you are not making this illness up -- it's real and you will have to find ways to live with it that allow you to take care of yourself as well as taking care of others.

    I am very concerned right now about young Karina Hansen (see news posting on main page of forums.) I cannot imagine how terribly isolated and frightened she must be. I've been writing letters in her support and hope everyone who reads about her will do the same.

    Take care of yourself!!
    Tamsyn
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  3. rockstar69

    rockstar69 Gail

    Hi TiffanyT82, Welcome aboard we are so glad you found us. You are definitely not alone you came to the right place where people understand. :)
    TiffanyT82 likes this.
  4. TiffanyT82

    TiffanyT82 Member

    Thank you for your kind words, Tamsyn. I'm trying very hard to see things like that, and hopefully soon I will! I read about Karina. How terrifying that must be for her! I will do what I can to help!
  5. TiffanyT82

    TiffanyT82 Member

    Thank you!
  6. MicheleK

    MicheleK Member

    Hi Tiffany,

    I am so glad you shared how having FM makes you feel emotionally in addition to physically. I am sorry that you too have been afflicted by the illness and that it has and continues to intrude on many areas of your life.

    Sometimes it helps just to get all those emotional feelings out to those who you know without a doubt will understand and accept without judgment whatever pours out of you. I felt reading your words as though they were an echo of mine and so many others who have shared. If we didn't share together none of us would even know that how we feel is pretty "normal" for what we go through. So thanks for sharing yourself with us.

    You certainly have been through a lot in addition to the Fibromyalgia. Thyroid cancer and Endometriosis are both quite challenging in and of themselves. I hope that the doctors were able to take care of those and get you on the right dose of thyroid and hormones if you needed them. The emotional upheaval from an imbalance of the thyroid and the hormonal imbalances that come from Endometriosis can make you feel like a ticking time bomb.

    I had Endometriosis for 7 years early on before it was a widely known medical issue. It was an agonizing time with doctors dismissing me, telling me there was nothing wrong with me, that I needed to see a psychiatrist etc.. All the time the Endometriosis was spreading further inside me and throwing my hormones into free falls while I was trying to raise my two young sons. It was such a relief when I found a knowledgeable doctor and was treated. I ended up with a hysterectomy but it was worth it to feel somewhat normal after so long.

    I developed auto-immune thyroid diseases a few years later. First Hashimoto's and then Graves. Whoa! What a rollercoaster. That too took a couple years to get regulated.

    All the while I had ME, FM & POTS on top of it. So I really, really can relate your how you are feeling and your frustration level. We have so many things we wish to do and we'd like to do them in a competent fashion but it seems as if we always come up with obstructions to being able to do what we want when we want or need to do them.

    My hope is that you felt some relief from getting your feelings out. I want you to know that they were heard and received with gentle kindness. Sending you some love. - Michele
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  7. Beadlady

    Beadlady Member

    Hi,
    Welcome to our group. My goodness you have a lot of stuff on your plate. I know it is hard to be pulled in so many directions. Keep searching for the right doctor for you. I see an Advanced Nurse Practioneer--she is in a medical office with one doctor and 6 other Nurse Practioneers. Each NP at this clinic has a Special Interest they focus on--Mine is Fibro, others deal with Heart problems, diabetes, weight loss etc. I was diagnosed 8 years ago--at the time I was working full time in a very busy non profit social service agency. I was fired 7 years ago--I just couldn't keep up with all of the stress between me & my co-workers, dealing with stressful clients everyday and was having a hard time trying to focus on my job {long story but I will not go there today..}

    Take care of yourself,
    Bead
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  8. Susieque!

    Susieque! Member

    Hi all! I am with you, Tiffany! Will write more when I am better. I, too, have had doctors tell me it is all in my head...until fibro was accepted into the Medical Journal (real name I forget at the moment)! I was diagnosed 20 years ago and had to cut my work (teaching school) to a "shared contract". Some days I still could not make it to work and had to have my partner cover for me. I am in a total flare right now and it has lasted the longest I think because my doctor (with my approval) has tried to cut back on some of my meds, namely Cymbalta and Meloxicam. I agreed with him, but will see him soon and say this is the worst I have ever felt. The best doctor to treat fibro in CA is a rheumatologist. Somehow the disease has fallen into their lap here. I have never found one with bedside manner, but at least they understand the disease. I am lucky, however...I am 64 years old, retired, with a lovely grown daughter and an understanding husband. So glad I was active when I was able and look forward to being active again, soon!
    During a flare, I look at it as a time I can catch up on reading and embroidery. Try to make the most of a difficult situation...easier said than done. Do you have access to a warm pool? The Arthritis Foundation can help you find one in your area. Getting into water will make you feel light and happy. If you are lucky you can find a good water aerobic class you can take. Go easy and find an instructor who understands your limits. Since fibro is an accepted medical diagnosis now, you have the right to a handicapped license. I only use mine when I have to because on good days, I feel the walk is good for me. And definitley find some good medical help! I'll be thinking of you out here in sunny CA where I hope to go to the beach soon!
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  9. Susieque!

    Susieque! Member

    Woa! Didn't know I would write so much today, but it is therapeutic to communicate with others "who know!"
    TiffanyT82 likes this.
  10. TiffanyT82

    TiffanyT82 Member

    Michelle-your response brought tears to my eyes. We definitely do have a lot in common! Yes, the effects of the endometriosis and thyroid issues coupled with Fibro make life almost seem unbearable at times. I can only begin to imagine what you went through with Grave's. I hope you are doing well, and are getting good treatment for everything. You sure are going through an awful lot!
    Susieque!, thank you very much for your advice. I do not have access to a warm pool, although I will say I have been giving my bathtub a workout lately. I am so glad that you have a supportive family. I would definitely be lost without mine! I haven't looked much into a handicapped license, although this flare has really made me think about it.
    All of the responses I have recieved on here mean the world to me, and you have definitely given me hope and a brighter outlook by letting me know that I'm not alone, and sometimes it's okay just to gripe a little. ;)
    I have much more I would like to say, but I am still feeling pretty awful, and my head seems to be a little fuzzier than normal. I will write more when I can.
    Much love to you all!

    Tiffany
  11. TiffanyT82

    TiffanyT82 Member

    Nice to meet you! I wish you all the best!

  12. TiffanyT82

    TiffanyT82 Member

    PS-I too, lost a job because of this mess.
    Can you tell me where you are located? I am interested in your clinic.
  13. Windytalker

    Windytalker Member

    Hi, Tiffany...I'm over here in Grove, OK. You haven't mentioned if you were affected by the tornado, but since you haven't, I'd like to think you and your family were safe. Had this affected you directly, it would certainly add to your many difficulties.

    I had FM my whole life, but just thought I was "different" and tried to be as "normal" as possible (whatever that is). And, it's not easy being a wife, mother and work living with this condition. So, I'm very empathetic. My diagnosis came in 2003 while visiting the Mayo Clinic in AZ for an entirely different problem (surgery damage). I'd never heard of it before but it explained a lifetime of what ailed me.

    ProHealth is the place to be to learn and read what worked for others or how they reacted to medications, etc. There's a "tacked" thread on what has helped others. I do hope you'll make some time to read that thread. Lots of good advice. And...ta da...I've recently added my 2 cents worth.

    By doing what I do, I have improved significantly on how I feel. But, I'll always have FM and learning to cope is a challenge. And, that's your goal...

    From one "Oakie" to another...I wish you well.:)
  14. Tiber2011

    Tiber2011 Member

    Tiffany, you're doing so much! I know how you feel though.

    I'm a 28 year-old guy....how I wish I had a wifey to help me. Lol.

    But you're right. You just want to sit on the floor and feel down and out. Especially with young people like us. We're the youngest people in the doctor's office usually. We didn't have 40 years of happiness and health until FM and cancer arrived. Few people can understand our anxiety and frustration. When you worry about driving a car or riding a bike at age 29, it's tough.