I have been thru a life changing event.

Discussion in 'Fibromyalgia Main Forum' started by rosemarie, Apr 15, 2011.

  1. rosemarie

    rosemarie Member

    I am not the person I want to be. I went to a memoral service of a 17 yr old daaaughter of a dear friend. This young woman never let on to friends or famly that she was ill. so ill that she could die. She lived her life to the fullest, did every thing she could. She did things for her family and friends,kept every one from fighting as she was a special sprit who coudl not stand any angry words. I am so saddend by her death, she was so young and wanted to be normal, To do all the things that a 17 t yr old would do proms, dating, singing, laulghing, hanging out with friends. NOt spending weeks in the ICU and fighting for her life.

    I have had trials in my life but nothing like losing a child. This family lost their first born to SIDs 25 yrs ago and now to lose their 17 yr old daughtrer is so sad.
    I feel so selfish in my actions, I tell , whine and complain about how rotten fibro makes me feel. I feell so badly because I know that fibro can't kill me but what she had did kill her. She was born with a genitic defect in her immiune system , her T cells did not work right and caused her to have lung damage , kidney damage , all over pain and she never told any one about it or let it affect her life and how she wanted to live it.

    I get caught up in the fatique and pain and lose where I am going, I don't need to share my feelings to ever one. I need to learn that every one does not need to hear about me and my problems.
    I don't fight to do the things I want to do. like taking hydro fit class's, lose weight as it will ease the pain in my knees. I am not wiling to take new meds for fiiibro becasue of the side effects as I have lerned that if there is a strange, unual reaction I will be the one to get it. I know this as it has happened to me with di fferent med over the years, some meds make me so angry at every one. some make me so out of it that I can't think straight, or they just make me feel strange, itchy and weird.

    I dont' want to feel like htat ever again. but I dont' konw how to explain that to my family and doctor. I want to be a better person, one who is wililng to change how I act behave and take the meds my md wants to me take. I am scared of what the reactions will be, as they have been really bad.
    I am so sorry for all the compaining about my pain to you and all the complaing I have done over the years.

    I am sorry for being such a baby about having fibro, and not living my lfie to it's fullest I stip and stress over the pain. I can't even not tell my family that I am hurting, No I over share how I feel. I am sorry for being so slefish abot my life. I am sorry about that.

    Sorry for all the whining I have done. ~HUGS~ I ahve much to be thankful for. Three healthy grand babies all born last year. Two baby boys age's 10 months to 6 months. and a sweet baby girl who is 5 and 1/2 months I Love my grandbabies and am so thankfull for the sweet grandbabies I have been given. All 7 of them are so dear to me and so loving all the time.
  2. gb66

    gb66 Well-Known Member

    I am so sorry for the loss of your friend's daughter. I cannot even imagine going through this. They have truly had so much to bear, losing 2 children.

    I do understand what you're you are saying about feeling guilty for complaing about what we have when there are so many things that happen to people. Try not to be too hard on yourself though. You are experiencing grief right now too. Not only for the young lady but for her parents as well. I know you must love your friends very much.

    I get so wrapped up in my own pain and sickness that I have to remind myself that other people are suffering too. I think that our loved ones suffer a lot more than we realize just seeing how bad we feel. It's ok to share your feelings with your family though. I also am reluctant to try new medicines for the same reasons you mentioned. This is a valid concern for some of us. Just look at all the things you have tried, many I'm sure, and all the doctor's you've probably seen over the years. I know you're doing your best. Hugs and prayers. GB66
  3. Mikie

    Mikie Moderator

    You are not a whiner. Non of us is. We all need to vent about our illnesses. FMS is a horrible illness which affects every part of our lives. Thank God we have this wonderful place where there are people who truly understand what we go through. We cannot compare ourselves to others when it comes to how we handle our illnesses. Your friened's daughter sounds like an exceptional girl and I'm so sorry her life ended so young and that she suffered in life. It's admirable that you want to use her example but please understand that you needn't feel guilty when you need to vent (venting isn't whining).

    A friend and neighbor recently had radiation for stomach cancer. When she told me, the first thing I told her was how sorry I was, the second thing was to ask what I could do to help and the third was that I'd pray for her. She sailed through the treatments with no side effects and I continued to support her. Does she return the friendship? Hell no. She is rude and treats me horribly when I tell her I can't do something, like stay out in the sun. She sneers like it's the most rediculous thing she has ever heard. We all have to deal with people like this. Cancer is something people can understand and sympathize with. Our illnesses are too mysterious and people fear what they don't understand. I don't whine but I certainly tell people when I can't do something because I'm sick. I've suffered far more over the last 20 yrs. with my illnesses than she ever did with her cancer. I'm glad she hasn't suffered but the sentiment certainly isn't mutual. I just let her self-centered rudeness roll off my back and I move on. This is a small community and we all need one another. If I needed a ride to the doc or something else, she would be there in a minute because a ride is something she can wrap her mind around.

    Anyway, to make a long story longer :) I admire your not wanting to be a whiner but, honey, you aren't. You are just fine as you are. I do believe that people come into our lives to help us grow in spirit and it seems to me that this wonderful child has touched your life in a very meaningful and special way.

    Love, Mikie
  4. Janalynn

    Janalynn New Member

    Those kind of things happening always make me reevalute my life. To have someone touch your life, even through her death, is such a gift to you.

    As far as "complaining" goes - needing to talk about how you feel, physically and emotionally is not complaining. It's totally normal to reach out to people, especially people have you have somthing in common with - this group here.

    I will tell you, I've had the same thoughts - not exactly, but that I want to be the kind of person that people smile when they see me, that I make smile. I remember working with a woman (younger than me) who lost her mother within 10 days of going in the hospital for something minor. The way she came to work everyday always made me admire her. When you'd say "how are you", she's say in a uplifting voice "GOOD!" I TRY to do that, but realize that I don't do that to the people closest to me - I often say "fine", then they know I'm hurting. Why do I feel it necessary for them to know I'm hurting? They already know how horrible this is. I have a very supportive family thankfully.

    I get how you want to live. I do too. I need to start living again - truly embracing life. We just don't know how much time we have on this earth.

    You do have some great blessings in your life Rosemarie. I do as well. Dont' feel badly about venting or anything else you need to do - Your post has reminded me that life is so precious. Thank you for that. I try to remember it everyday, but sometimes don't live like that.

    I hope you have a WONDERFUL day today!

  5. Mikie

    Mikie Moderator

    I usually say I'm fine when people ask. I got a call from the SIL of my Mother's best friend. I told him I was fine when he called. He said, "Good, then you can start spending time with "Mom" (my Mother's best friend) because we brought her down from Maine and she's in a nursing home near you." He was expecting me to visit her all the time. At the time, my illnesses were in a huge flare (still are) and I had to try to explain to him that I couldn't after telling him I was fine. So now, I say I'm "OK." That way, I don't have to back peddle so much if someone asks something of me.

    I don't believe in moping around and try to keep as possitive as possible but the reality is that right now, I have my limits. If I need a down day or can't do something, I look out for myself because people without our illnesses just don't understand. It is true that illnesses affect us all differently and there is no "one-size-fits-all" way to deal with them. I admire the person who needs to confide as much as the one who is stoic.

    Love, Mikie
  6. TigerLilea

    TigerLilea Active Member

    Rosemarie, I understand how you feel right now about life changing events. My dad died in December from a brain tumour that he didn't know that he had. It was obvious that there was something wrong the last few months of his life, and in hindsight, we can now see that things weren't right for the last year or two. He had to have known that something was wrong yet he never said a word, and he never once complained. It was only in the last week of his life that he told the doctor in the ER about things that he had noticed over the last year.

    I, too, get caught up in the exhaustion, the muscle pain, and the frustration of having CFS. And, I do share with family members my frustration. And, yes, I probably do overshare also. I want them to know how I feel when I'm hurting. I want them to know that there is a reason why I can't do the things that I used to love doing. I want them to understand that there is a reason why things like cooking, crafts and gardening aren't always easy to do. I am not lazy. I have an illness. They don't always see it that way.

    Like you, I also don't fight to do the things that I know that I should do such as eat right and exercise. I get started for a couple of weeks, have a bad CFS day, and then quit only to start again many months down the road. When things weren't right with dad, I'd get upset with him for eating poorly, not taking his vitamins, or for sitting around too much and not getting enough exercise, and yet here I am doing exactly the same thing.

    My dad's death has been my life changing event and a huge wakeup call for me. I hadn't realized that I had stopped living. Oh, I thought I was doing okay, but I realize now that I had given up. I've spent too much time "thinking" about CFS and feeling sorry for myself. I'm always telling other people with CFS that we are NOT our illness, yet I forgot that with myself. Our thoughts create our realities and my reality became a life wasted.

    You have nothing to apologize for, Rosemarie. We all need to vent on ocassion about having CFS and/or FM, however, I think the trick is not to do it too often. We need to look at the good we have in our lives and concentrate on that. As bad as CFS and FM are, things could be a lot worse.

    Take care.
  7. rosemarie

    rosemarie Member

    I too have been

    Thank you al for your thoughts and support. life has a way of making us stop and take a look at our own lives. Recently I had to renew my drivers license and inform the drivers license division of my disability. I did this and soon had my new licnese in hand , But shortly i recieved a notice in the mail that I needed to have my doctor fill out a form and rate my disability.

    I also had to write down all the meds I take, I did that and after giving the paper to my doctor I was shocked to note that he had rated my disability at a 3 and then in another coloum put down a rating of 8 NO DRIVING because of the meds I take. I was so upset that I called my daughters one works for the Drivers license divisoin, she told me that he had to fill out another form and then she called his office and informed them to let him know all the info about people who drive with medications.

    Of my three daughters 2 really don't understand how fibro affects us, causes us to have pain , severe fatique, and all the other problems we have. They feel that I would be much better off if i were to wean off all my pain meds ,soma, and visteril. i have agreed to reduce my pain meds because I know that they are not working as well as they did once. I am on strong narcoitics and it will take a long time to reduce them. my rehumy said that since I have been on MScontin and MSIR for several years that they are not as effective as they once were and it may help me if i were to try meds for fibro. As I mentioned I have taken several differente medications over the years and I have had some strange side effects that are scary for me.

    My two older daughters have been helping me to get my drivers license back, one had taking me out driving so that I could pass my driving test. The other has just been very supsportive of me and getting me to understand, that I am hard on my self , that I look at life as being the glass half full. I do tend to feel like that some times but I also feel that I don't want to have to go thru more pain and taking meds that have a great chance of making me feel worse than I already do. neither understand that I have taken so many meds over the years that I have had side effects that are not the norm.

    I get every unusal reaction possiable and it has been this way since I was a child. It is not some thing I have made up or that I am afraid of taking. When the doctors susgested lyrica to me I said NO way, I dont' need to gain any more weight, that if I lost weight it would help with my arthritis in my knee's. I don't want to take it as it has so many side effects and I dont' want to be the person that reacts to every side effect and even ones that most people don't get. It has happened far to often. MY girls and doctor think I am being negitive about the meds , that I don't know for sure that I would have any unusal side effects and I should at least give some a chance.

    Since I have had issues with my drivers license my daughters have been helping me to get it back and have been so supportive about it. I know that I don't have the best self opinion but I know from taking other meds to help me reduce my dependance on Xanax only made me angry , bitter,I yelled at every one, I was so angry all the time and I dont' want that to happen again. I also don't want to make my daughters upset with me for not wanting to go off all my pain meds. I know that when I was off all narcoitics and taking some thing else for the fibro. that when I was flaring my doctor would then call in pain meds for me and that they would work better because I had not been taking them for so long.
    I am so stressed that between my daughters and doctor that neither understand me and how I feel about stopping my meds , I know that they dont' understand the reasons I don't want to change my meds. I don't know how to explain to them that the pain I live with is more than fibro, it 's arthritis, cmp,DDD, buldging discs . There is more pain then just fibro, no one gets it that I have lived with pain all my life from a three yr old with leg aches to a young woman with female problems and a body that ached , hurt so bad for no real reason or so I had been told.
    Now at 55 yrs old I have been on pain meds for the past 15 years [the really strong ones. Morhpine} {in te early years my ob gyn gave me Tylonyel #3, When I had surgery I was given Lortabs or for my knee surgeries I was given Demoral.
    I dont' want to go back to a life where when my pain is out of control I have to call my doctor and ask for pain meds, having to explain how much it hurts so that he will understand . Most doctors don't want to prescribe any thing stronger than T3's or lortab. usually they want to prescribe Ultram and toradol both meds I can't take because of the strange side effects i have when taking them.

    I want my daughters to accept me dispite the fact I dont' want to take meds that can possiabley make me feel worse. I dont' want to live my life in pain. But I want to keep this new and better relationship that we have been working towards these past few months.
    . I am not afraid to try new meds, i am just nervous about the side effects that may come with trying new meds. I have tried so many new meds and the reactions 99 % of the time have been not normal, unusal, strange, unheard of in some case's I dont' want to have to go thru that again. But I fear if i don't my daughters won't understand and will think I am not thinking posiively, that I am looking at it with a glass half full way of thinking.
    IN teh past when I did try differnt meds the girls were to young to remember the reactions I had. my mom knows and remembers but she is 83 and has been so sick and forgetfull that my girls would just think I had asked mom to saythat to them.

    I am aat a quandry, what do I do? My girls don't understand all the effects of fibro, it is not just pain, fatique but so much more issues that come with the dx of fibro. I don't know how to make them understand, I have had days where I can't function think staright, my words slur. When this hpapenes my girls think I have taken too many pain pills when most of the time I have not taken any thing at all. They think that some one who has fibro does not have symptoms like I have had. My girls think that all people who have fibro have the same reactions to it. They all have pain , aches but not the forgetfullness or that their words don't slur when some one has woken them up from a sound sleep, i don't sleep most nights and when I do fall alseep during the day I am awake one minute and out cold the next but I have not taken any thing for pain, that is just how it affects me.I want them to understand that fibro is different in each one of us, just as differnt meds affect me and not some one else. It has been said that only 10% of the people with fibro on Lyrica gain weight. I am not being negitive when I say I would be among that 10% abd taht if there are any strange or unusal reactions I would have them. When all my life i have had this problem with medicaitons why would it change now?,

    I want my girls to accept me even if I don't stop all my pain meds, I want them to trust me when i tell them that i can't take a medication because of it's side effects, I have had some that have been really bad and it terrifies me that it could happen again.
    Sorry for all the whining and complaining , I Love my daughters no matter what, but I would really love it if they would accept me dispite all my having fibro.
    Thank you for your thougths and support.
  8. earthdog2000

    earthdog2000 Member

    I'm just back on this message board after 5 years. I am now also having a lot of trouble with the meds. My sister tells me to get off the Adderall: she says it makes my anxiety, stress and memory worse. I'm starting to think she is right! My dr. prescribed it for severe fatigue for my fibro and CFS and it has made me feel less tired by about 20-30% and made me lose weight very fast! I have just lately noticed that it may be increasing my anxiety, stress and memory!

    Sorry, I tend to ramble on and off,lol! Anywho this WAS intended to help you! I'm so sorry that you are having troubles with your doc and daughter's understanding about the meds, your pain, etc.! Have you tried to go back on the Lortab recently? That's what I take for pain and it's the ONLY pain med that helps me sleep pretty good along with Lyrica yet keeps me more alert during the day. Believe me, I have tried all of the pain meds you mentioned plus a few others. The Lortab/Vicodin is really hard to get off of but not as bad as the others. I used to take 5-6 a day just to work my part-time job! 10/325, the strong stuff but with less tylenol than the lower doses and it doesn't make my IBS flare up! I have recently gone down to 4 or 5 a day. I plan on doing this very slow per my doc and then start trying some homeopathic things. I have been off work on vacation for a month so that is probably why I can get by with only 4-5 a day duh!

    I have faith and hope that your daughter's will come to understand more in time. Maybe they need to see and talk to you more often about your issues. Giving them all of the symptoms may be hard for them to swallow but if they are mature enough or compassionate enough with you then I think they will GET IT! I have a strong sense that they love you very much but girl's do tend to be more worried about their own issues until they get older. How old are your girl's? Mine were 20 and 25 before they started to understand and even then my oldest daughter was not very supportive! My youngest is now almost 21 and checks in with me quite often and is very understanding! Maybe ask them if they are interested in reading " Fibromyalgia for Dummy's", seriously. It helped my hubby a lot but daughter's were too young then and I did not burden them with my health issues. Maybe I'll loan it to my oldest daughter some day soon and maybe she will at least find the time and desire to read a little at a time. I hope so. I also have 2 sons but they accept me for who I am and want to know if I'm having a rough time. It's funny but they worry about me more than my girl's do!

    In closing I would like to say that I hope and pray you can find the strength however little to resolve these issues. What do you have to lose if you are a little firm with your girl's? They will love you no matter what. Oh and by the way I do have some ESP,lol!

    Faith and hope, Earthdog :)
  9. rosemarie

    rosemarie Member

    MY daughters are all married, and have babies. The oldest is 33 and has two boys 3 yrs and 10 months. THe middle daughter had her first baby last OCtober and got the cutest boy. also the chubbiest baby you have ever seen. The youngest is 26 and had her 3rd baby 11 days after her sister only she had a girl, she also has a son who is 6 and a daughter who is 4yrs.

    So all the girls are old enough to understand things but they go by what they hear and read. I have lived with pain all my life and have taken T3's and demoral injections when the pain got too bad.

    Some one asked are my meds working. I have been to several doctors over the years to find what it the best med and right dosage for me. I was under the impression that when the doctor wrote me a script for 30 days it was to last for 30 days and be refilled on day 30. I found out aht is not the case and that I need to not fill my meds till just before i am totally out of them.

    In my early marriage I had many female problems , surgeries, knee surgeries, blood transfusion's, and later on I shattered my left wrist which now has a titaium plate and six screws in it holding it together. only one problem one of the screws has come loose and to fix it requires more surgeries , that I really can't afford and don't want to have done. I also need both knee's replaced and dont' have the money to pay for it so they will have to wait till later, i have had too many surgeries in my life and now i am terrified of even the thought of having surgery. Each time I had surgery I have gone thru "Oh my You take all this narcointic pain meds how do you function don't you know that your addicted to them/ and alot of hassle that i dont' need. I am so sick of being judged because of the meds i take , being judged by doctors and family is hard and i can't cope with it much more.

    don't know why or what is causeing my flares, I don't know if it is becauses I am in a flare from stress from the drivers liecense stuff and from my mother being ill . She was taken to the hospital three weeks ago wwiwth A fib and pheunumonia . She didn't look like she was gooing to make it but thankfully she is in rehab now getting stronger so she can come home and be with her great grand kids again. {My oldest daughter and her family live with my 83 yr old mom}
    When I went in to talk to my rehumy about my driving. I asked him why now had he said NO driveing when he had been my doctor for over 4 yrs. he said that he does not feel that my meds are really working like they should, I most likely dont' get the same response I did when I first started taking them. I had not really thought about it.

    But now that I have , I don't know if I am dealing with my pain better or not having so many flares, Then all this stuff happened and since last monday I have been in the worst pain in years. But now I am taking much less of the Mscontin it was chagned from 100 mgs x2 daily to 60 mgx 2 daily. I had been taking only one mscontin100 mg on my own reducing it so that I didn't have so much in my system. I really don't feel as my pian meds are really helping me like they should.
    I am taking less and under alot of stress now. I don't know if my pain levels are worse due to teh stress of my mom being so ill , feeling the pain from watching my friend lose his 17 yr old daughter. Or the stress of having two SIL's that are both over sea's deployed. one daughter has driven to La from Utah to meet up with her hubby on leave so that they can have the other grandparents meet the newset baby and daddy too.. I am worrying about her d riving home after spending two weeks with hubby and inlaws, her MIL is driving back with her helping with the three kids. She is going to have it rough comming home when the kids reliize that daddy is not comming home with them.. My middle daughter got the biggest surprise when her hubby came home on leave now instead of in July. She is thrilled. And so am I.

    I am nervous about stopping my pain meds ,& soma mostly about the pain meds, I don't know what will happen will I have more pain and will my doctor follow thru with giveing me scripts for pain before I have a flare from fibro or arthritis. I have not been off all pain meds in years. Over the years my doctors have tried other meds that they thought would help with the fibro pain, I have been on cymbalta, remoron, elevil, and others, but non have ever done any thing but cause me more problems from unusal side effects.

    I took Ultram and toradol years ago and started having painic attacks. really bad ones i don't want that again. some made me angry at the world, or just plan sick feeling , not feeling like doing any thing it was depressing to feel like that all the time. So I am worried about trying new meds , I don't mean to sound like the glass half empty person it is just that I am that person who if there is a strange , not known of reaction to a medication I will have it. and it will not be good.

    It has happened so many times before that I really don't want to try new meds. I can't afford lyrica and I don't need to gain weight, I weigh far too much as it is. I am not sure what meds my medicare plan will cover, some they do and some they don't. I am on a plan that has a co-pay for doctor and rx's. But they are the ones who decide what meds are on what tier . for a while my mscointin was a teir 3 costing me $58.00 a month. I can't afford that any more, I have dental problems and will be paying off the dentist for ever.

    I still owe money on my glass's. And my hubby of 30 years does not assist in paying any medical or dental bills for me. He never has. But now it is because I am not on his insurance as it costs so much and pays so little. He also has no dental ins. So money is really tight.

    I get just over $300.00 a month to pay for scripts, doctor visits, dental , and glass's and any other bills like car ins and gas, paying for inspections, and oil changes. So that is a big part of not wanting to add more meds that may or may not help me or make me feel worse.
    I have been thinking aobut it and no my meds are not helping as much as I would like but i am not going to increase them ever again. I guess that I would like to be able to be on some thing like the Lortab 10's again as they did help back in the day

    All of my stress about meds is due to fear and fear of the unknown. I do have panic attacks and thankfully they have not been too bad but then I have been on muy Xanax for 20 years and will not be going off it any time soon. OK most likely never. But I have not increase my doseage of Xanax in years. I am taking 2 mgs at night. I don't sleep due to the pain and change of our bed.

    We went thru a really rough time in 2009 and 2010 hubby lost his job and was unemployeed for 10 months and when he got new job it paid $27,000 less a year and the insuracne is most costly , has a really high deductable on both medical and scripts. Hubby is diebetic and his meds are very spendy as are the testing strips and his pump. During that time we lost our house as we could not make the payments, we are now living in a tiny 2 bedroom house that is cold and drafty, there is no room for my grandkids to play when they come over, we had to buy a new bed as our water bed leaked and this new bed while it has a temperpedic mattress cover and is a soft mattress , feels like i am laying on bricks.

    So sleeping does not come easy for me on that bed. Now i have my days and nights mixed up like a newborn and it is a pain, I dont want to try sleep aids perscriptions are a no no and I have treid meletonin and while it worked for a while it also made me sleepy all day long. That caused issues with ,my daughters as they would call and wake me up and i would sound like i had over dosed or was drunk. I had not taken too many pain meds and i don't drink..

    In some ways i do want to get off my strong narcoitics and see if the lessor ones would still ease my flares. It scares me to think that if I got off my mscontin , and my dcotor tells me that hew ill prescribe for me less stong pain meds when i flare. What will happen when i suddenly have a flare and he is out of town and there is no one else in his practice that will prescribe pain meds for me and i will be up a creek. This has happend now in the last few years , I have called to get my meds refilled only to find out that he is out of town for two or three weeks and I am up a creek with out a paddle. I don't know if my GP would prescribe any pain meds for me, i know that he will not prescribe what I am on now. So it leaves me wondering if he would be willing to prescribe for me meds so that i could have them when a flare hits and not need them and can't get them. I dont' want to be up a creek with out any pain relief.
    i want to make some chagnes in my life to include massage's and swimming in a deep end water arobic s class. I would love a massage but they are costly and with my limits alot ment of money theuy are hard to save up for. I would like to try herbs but dont' have the money to do so. Medicare does not conver those costs just as they dont' cover my xanax, or a chiopractor, or taking herbs. I am beteen a rock and a hard spot. Wanting treatments that may help me better than meds can but can't afford them. I would love to have lesss pain adn to be abel to lift my grandbabies and to help out my mom. I am so sick of not sleeping and when i do it is during the day and I am struggleing to fit in with my family. NO one else has fibro, or knee;s like mine, no one live's in pain all day every day or even understnads that it is possiable to live in apin from fibro and other illness's. I am not strange weird or unusal, i am just a woman l iving with fibro and trying to be the best person I can be. I really dont' like to take all the meds I do, butr i am so scared to try new meds that may cause strange side effects like before. Thank you for listening to me complain about my life.
    i am sorry for all the griping. I want to have a better life now and am not willing to be alone with out pain meds when i am in pain. Sorry for the complaining . I am sorry if I have offened any one. Thanks for your time.
  10. Mikie

    Mikie Moderator

    Pain and fatigue. Most of us deal with problems with meds, our finances, and our friends and family. We don't want to talk about our illnesses all the time. In fact, most of us would like to stop having to think about them at all. Most of us did that when we went through the denial phase of our illnesses. Denial doesn't work. I am sick of people asking why I can't do something and then treat me like I'm a hypochondriac. They don't understand these illnesses and, due to their own fear, don't want to understand them. I've accepted this and am going to just tell people I can't do things which I can't do. No excuses, no explaining! I've tried that and it only serves to stress me further. It also makes me resent my friends and family.

    Even knowing how sick I've been, my daughter e-mailed me that she promised my grandson they would visit me in May as soon as school is out. I e-mailed back that she probably shouldn't make promises and disappoint him as I'm not up to a visit. I haven't hear back from her. It isn't easy to accept that what she wants trumps my health.

    I'm sorry to be making this about me and my problems but I needed to vent. I know my story is repeated in everyone with our illnesses. I am feeling a bit isolated resting. Seems people are only interested in us when we seem "normal."

    Love, Mikie
  11. earthdog2000

    earthdog2000 Member

    I just got up and read my emails and there you were. I wish I had "time" to reply back more but have to be at church by 11:00! I have a lot to say to you and will reply back more this afternoon or evening. I also have errands to run and then a friend is coming over at 2. My son is coming over about 4 or 5 with dinner cause my hubby is working and with all of these things I am doing today I will not feel like cooking, isn't he sweet?

    I hope you are feeling a "bit" better and not stressing too much. Listen to what the others are saying and take comfort in that. Also, maybe you could read something calming like an inspirational book or write in a journal ( if you can with your arthritis ) is it in your hands too?
    I personally pray a lot and read my bible these days. I am a Christian and very spiritual but not "religious" per say.

    Take care of you and I hope you are feeling calmer when I come back on the boards later! Many gentle hugs, Julie
  12. Janalynn

    Janalynn New Member

    I'm just going to throw this out there....

    I'm wondering if you just don't want to have to take the meds. Meaning, if you're like me, you don't want this darn pain, so you don't like needing medication - but for me, the alternative is worse. Have you read all of the posts on here from people who are suffering with Dr.'s who won't help them at all?

    I'm sorry but I hate it when people say they have as much pain but just deal with it better.

    I've given up on questioning why I have flares. I've tried to tie them to something and sometimes I can but many times I can't - they just come out of the blue. I do know for sure that stress absolutely without a doubt affects my body terribly. I'm under huge amounts of stress right now and I'm doing everything I can to control it so I don't get caught being down and out and unable to move.

    There are things that can make us feel better- you/we/me just need to find what those are, whether it be meditation/yoga etc. My belief is that there is a huge mind/body connection. That does not mean that you can will yourself "better", but I do believe that our thoughts can change our feelings and it that helps in some little way, then hey, I'll take it!

    1 am I'm wide awake. UGH.
  13. rosemarie

    rosemarie Member

    Jana, your right, I wish that I didn't have to take pain meds at all, I hate pain and don't deal with it very well. I know that for a long time i was over medicated but now I am more in control and don't want to add meds that I feel are wrong for me.

    I have been researching the newer meds for fibro, I have noticed a trend. Doctors only count those patients on which the meds work and the ones that it does not work on are not counted in the study. My rehumy told me that only less than 10% of patients on lyricia gain weight.

    NOthing was said about the weird feelings you can get, the out of it feeling, some get panic attacks from it and some it only takes a dosage for things to go wrong. I hvae read aobut more than 10% of people taking lyricia have really bad side effects besides the weight gain. Memory loss, nausea, fatique , muscle pain severe, and some have side effects that no one else has . I think that those of us who don't conform to what doctors feel the new meds should do get blown off and burshed off never to be thought of again.

    I also hate it when some one says that they just handle pain better than I do, if I would just relax not think about it I would be able to deal with it better. I am reminded of when my faather passed away, 9 days before my13th birthday, people came up to me and would tell me"Oh honey I just know how you feel" The heck you do, your not 13, it's not your dad who dies before your birthday, your not me, I know how I feel but no one else does and it is some thing I can't put into words.

    I wish that my girls and their dad could understand that I don't get much money from SSDI it is under $300.00 a month, and has to pay for my scripts, dental bills ,vision bills, gas for my car, any foods that i want as treats.

    WE all have are hard times in life and we all deal with our indivudal illness's in a different way. I do tend to reamble on and on about things that really don't matter.
    I have been blessed with 7 beautiful grandbabies whom make my days much happier. I also have been married for 30 yrs to the same man and while he does not always understand things in the same light as I do I love him with all my heart. My mom is still with us though she has had a rough time in the past few years, right now she is in a rehab unit after being sick for a month. She is doing much better and should be home soon.

    Thank you all for putting up with my ramblings,

    Rosemarie[This Message was Edited on 04/30/2011]
  14. Kittyweird

    Kittyweird New Member

    I understand completely! I spent years battling endometriosis, chronic sinus trouble, recurring bronchitis, the list goes on & on. 9 years ago, I was diagnosed with Fibro. I went to doctor after doctor trying to find some relief. I have been on many different types of drugs that were supposed to help, but they all made me unable to function. If there is a side effect, I get it. My mental health went downhill quickly. I was depressed & nasty to my husband. My darling wonderful husband who has stuck by me through all of this! Once it dawned on me how I was behaving, I knew it had to stop. I was spending all day in a chair as life passed me by.

    I then began to research this illness. I discovered that many Drs. & scientists now believe that Fibro is a disorder of the central nervous system. That made sense to me & explained all the odd symptoms that I had been having that I did not know were part of the Fibro. Things like weird skin crawling feelings, muscle spasms, ringing & other noises in my ears, etc. etc.

    Then I discovered Pro Health. I began taking their supplements & I felt a tiny bit better. I kept taking them & felt my body respond more & more in a good way. I started walking as much as I can & doing very gentle yoga stretches twice a day. I do these stretches even if it hurts, & often do them with tears pouring down my face, but I now know that if I don't move & stretch I will lose all mobility.

    I stopped taking all pharmaceuticals except for a very low dose of cyclobenzaprien at bed time. One of these at bedtime combined with 2 Fibro Freedom capsules allows me to sleep! Before, I had taken hours to fall asleep, followed by waking up in pain every hour or so. Then I added 3 inch memory foam (bought on clearance) to my bed. OMG! What a difference! Most nights I now sleep for at least 7 hours, sometimes more! Occasionally I wake up at night still, but I can usually fall back asleep. No more having to get up in the middle of the night to sit in a chair because it hurts too much to lay down. No more getting out of bed so stiff that I fall down. I still have fibro night sweats sometimes, haven't found the answer to that one yet.

    I use Pro Health's Maximum Wellness drink mix, & if I'm in a flare I may take Fibro Freedom during the day. I have radically changed my diet. No fake sugars, no fake fats, no msg, no high fructose corn syrup. If I can't pronounce it, it doesn't belong in my body. I do not buy prepackaged meals unless they are organic. I buy as much organic as I can,yes, it's more expensive, but worth it to my body & mind. If I can't afford organic fruits & vegetables, I make sure to wash them well.

    I get regular chiropractic care, (only from Palmer trained chiros!). I had my first Reikki treatment last month. I went in a bit skeptical, but was amazed at the results. I want to try acupuncture next. Luckily we have Group Health insurance which offers these services at $35 a treatment. I have finally, after all these years, found a good medical support team.

    I am considering buying a cane as I also have arthritis. I bought a good electric back massager, bought during a close out sale, & also use a theraphy cane to tackle the knots in my back & shoulders. Tiger balm heat rub works for me. The other heat rubs burn and/or irritate my skin. I get skin yeast & Gold Bond products help with that. I feel I cannot live without my Gold Bond products!

    All of these things have now enabled me to be active most days. I still have pain every day,
    I have learned to work around it. I pace myself & take several breaks during the day. I cannot hold a regular job, but have started doing art shows with the help of my husband. I have even won some awards at these shows! Sometimes I can even go out at night now. If I do I take Pro Health's Fibro Energy . My biggest hurdle lately has been brain fog & memory loss. I am trying Grapeseed to try to fix that.

    I believe that, even though I still have pain & suffering from this illness, I can have a life. It may not be exactly the life that I want, but most days, I am no longer a blob in a chair. Several major surgeries, as well as the Fibro have taught me that pain, to a degree, can be lived with. Again, it's not the way of life I would have chosen, but it's a better life than I had a few years ago. As long as I can keep fighting I will.

    Some of my family members & friends do not understand this illness & some have said hurtful things. I have educated those that I can, & I have kicked some toxic people out of my life or drawn boundaries with them. Sometimes you just can't fix stupid! I am proud of myself for taking a stand & for continuing to fight this.
    [This Message was Edited on 04/20/2011]
  15. winsco1

    winsco1 New Member

    The story goes that there was a man walking on the beach. In the far distance he saw another man walking on the beach coming toward him. As the man approached he noticed that every few feet he was bending over and picking something up and tossing it into the waves.

    He watched as the man did this over and over as he continued to approach. He asked himself, "What is he doing? Every 4 or 5 feet he reaches down as if he were picking something up and tosses toward the water".

    As the man came closer he decided he would ask. "Excuse me sir but I noticed that every 4 or 5 feet you would reach down as if you were picking something up then make a tossing motion toward the waves. May I ask what you are doing?"

    The man reached down and picked up a small starfish and held it out in his hand. "I am tossing starfish back into the water".

    The man replied, "don't you know that you can't save them all?" As he turned and tossed the little starfish back into the water the man answered, "I know, but I just made a difference to this one".

    Rosemarie, as long as you keep tossing us floundering little starfish here on the message board back into the waves with kind words, uplifting hugs and thoughtful prayers, you are making a difference.
    [This Message was Edited on 04/21/2011]
  16. winsco1

    winsco1 New Member

    you never really know how you impact another person's life.

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