Info needed on dangers of getting surgery when you have fibro

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by zenouchy, Dec 14, 2012.

  1. zenouchy

    zenouchy Member

    Hi All,

    Hope everyone is having a healthy Friday. Thank you for reading my message. My life is turning into a soap opera. At least I can entertain, right? Sorry for not being here more; I'm very sensitive to the bright lights of my computer, even on the lowest setting. Not sure if y'all remember the drama I had with my parents a few months ago....my mom mocking my illness, the letter I was composing to her. You all were so wonderful and helpful. Thank you again.

    The outcome there (very long story short) is that she was clueless and I had to stop talking to her for the most part. She never used to be this way, so it could be that she's getting older and having some issues there, although it's very convoluted. My parents despite my fibro and assorted accompanying illnesses can't accept it, always wanted me to be the stellar achiever and want me to "walk on water". It's crazy unrealistic. Somewhere in the mix, they love me in "their way", but I can't talk to them much anymore because it has become too toxic.

    Add to the soap opera, my only sibling, my dear sister, I found out last night, her bone marrow is shutting down. Incredibly shocking and sad. She needs a bone marrow transplant. I have a 25% chance of being a match. My parents are creating a side show by asking me if I would be a bone marrow donator if I'm a match. This is all but impossible b/c I have fibro (and those other assorted illnesses that accompany it). Of course, my parents who deny my illness (they know I have it, but expect me to behave like a healthy person) expect nothing less that I will help out.

    My heart strings are of course pulled, and I love my only sister so much and it hurts amazingly that I can't help, even though I know it's not possible. Donating bone marrow is grueling for a healthy person. To do it with fibro is dangerous. My parents will not just take my word for it. That would be too easy for such toxic parental units. Pretty sad and pathetic isn't it? But what can ya do?

    So, does anyone have or know of any literature out there that I can email/send them that states the dangers of getting surgery with fibro? I looked on the prohealth board, and there are a few articles that tell a person with fibro what to if they have to get surgery. It's a pretty long list. My parents will just read that and say something to the effect of "okay, so what's the problem, so you'll hurt a little more for awhile (when it's much more serious than that); this is your sister". CLUELESS.

    If anyone has any ideas or info, it would be greatly appreciated. If not, I understand, and thank you so much for reading and listening. So sad to be so maligned and to have my illness (as usual) turned into a side show when it's my sister that needs the help right now.

    Much love and light to all,

    Erika
  2. jole

    jole Member

    I feel so badly for you and your situation, and wish your sis the very best.

    However, YOU are not the answer!!!

    Please check with your Red Cross there. People with fibro are NOT to donate blood, since this is considered an autoimmune disease. At least in my area, we cannot donate.

    Therefore, you would not be a suitable donor. You may want to check out what I'm saying with an Internist or Immunologist.....don't know how much a regular GP would know about this. But please do not put her at greater risk, and don't let anyone make you feel guilty when you say no.

    The Red Cross may also have info on this which would satisfy your parents.

    Hugs....Jole
  3. zenouchy

    zenouchy Member

    Thank you so much your thoughts and response. I appreciate it very much. I did not know that re: giving blood and autoimmune illnesses and will look into it further. Crazy to have to go on a "wild goose chase" to satisfy my parents. ;) I won't actually do that, but I will check into your suggestions. Going to talk to my psychiatrist too for ideas---she's amazing and is going to talk to me on Monday by phone for 15 minutes free of charge, which is so generous of her.

    Makes sense as well not to put my sister at greater risk; that would be terrible too. My parents do not think straight. You have been so thoughtful and helpful.

    Warm hugs,

    Erika
  4. zenouchy

    zenouchy Member

    Jole,

    Thank you so much for helping me think straight during such an emotional time. The website I was looking at re: bone marrow donations had so much info, but I looked again and thanks to you I found some information re: eligibility for donating bone marrow, and you're right, if you have fibro, you aren't eligible. Shew, that settles it. Thank you for being a wonderful sounding board and helping me think clearly during such a stressful time.

    Love and light,

    Erika
  5. Mikie

    Mikie Moderator

    I am so sorry for you and your sister. It is my opinion that under no circumstances should you consider doing this. There are donor lists out there and she should be looking for another donor. It is usually safe for a healthy individual to donate but we are not normal. No one knows what causes our illnesses and many of us have underlying conditions which could be passed on in donated blood, tissue and marrow. It is wonderful that you would even consider doing this but if you were my sister, I wouldn't take a donation from you. Your family may not be willing to face the reality of our illnesses but we all know what they entail. My advice is not to consider this. I know how hard it is to resist family emotional pressure and guilt but this definitely isn't in your best interest and it is up to you to watch out for yourself. I would tell you this if you were my own daughter. God bless you. Sweetie.

    Love, Mikie
  6. zenouchy

    zenouchy Member

    Thank you so very much. First wanted to tell you I am praying for you every day for much improved health. So kind of you to reach out to me when you are having such a challenging time. This board is such a life-line for caring help and sanity.

    You are spot on. i absolutely will not help my sister, no matter how I want to and would have done so in a normal situation. Under these circumstances, I do not feel guilty about it. It's not safe for me or her. It's just life's reality. My parent's are not in tuned into reality at all, and thanks to people here, to my husband and caring friends in person, I have been able to go through the process of understanding more poignantly over the past few months just how toxic they have been, even through at times they were loving. (Doesn't excuse the toxic part at all though...)

    It hurts a lot to have so little contact with them (we had some good times too), yes, but I will not harm myself (read: in the form of pushing myself relentlessly which means getting more sick as they always insisted which never made sense!) or hate myself for it because they can't accept me or my illness. Their form of "love" for me is toxic.

    My concern right now is that I will not be able to support in the way that she deserves because they are her care-takers and they will continue to malign me b/c I can't "care" or "support" my sister in the form that my parents think is appropriate---ie, jump on a plane at the last minute (I have to plan ahead) or who knows. They don't want to work WITH me and haven't in a long time. If I can't do it their way, it means, I'm a selfish, mean !&#^, not an ill person who has to take care of herself, and they can't look at the caring, loving person I am and see what can I give? But then it's "oh, but we love you so much!". It's so beyond screwy and very sad. They don't trust the own daughter they raised. Very sad and bizarro.

    If I can't tolerate talking to them on the phone for obvious reasons, how am I supposed to visit the sister who needs me when they will be present? It's such an unnecessary side show that my parents are creating when it should be about HER. My dad's difficult when there's little stress, and when there's a lot, forget about it. My mom...she's not who she was a few years ago. I give up!!! I just don't think there's anything I can do or make sense out of them in any way. I've talked to two counselors and two psychiatrists over the span of three years about them before it was even this bad, and honestly, they didn't know what to say either!!

    Thank you so much again, Mikie. Feel better and my continued thoughts and prayers are with you.

    Love and light,

    Erika
  7. Mikie

    Mikie Moderator

    Situations like this are heartbreaking. They have turned it into a lose/lose situation and, as you said, it's toxic. It's toxic as hell!

    The good news is that you have other support and professional help. Shrinks often don't know what to say. They are supposed to help guide us to our own conclusions. Well, I'm not a shrink. I do not usually tell people what I think they should do, like I know it all; I don't. But, I do recognize pain and toxic situations and I know we should all avoid them at any cost.

    I have a neighbor who had cancer which has been "cured." I was so supportive of her throughout that. Then, she made a very hurtful comment about my illnesses. Just because our illnesses are more elusive and don't have scary names, like Cancer, doesn't make them less painful and stressful. She now has wet macular degeneration and has lost the sight in one eye. I am, again, supportive and she has softened a lot and is supportive of me. I think one neighbor has educated her about what ails me. I just don't let others' ignorance cause me pain. I stay away from them if I need to; however, it's not so easy when it's family.

    I'm so glad you have such a healthy outlook and are looking out for your own best interests. I know it's painful but it really is the best thing you can do. My prayers are with you and your family.

    Love, Mikie
  8. zenouchy

    zenouchy Member

    Thank you so much for your sweet, thoughtful reply. It means so much to me. I'm so drained---just out of thoughts and ideas and think it's beyond me solving. It's probably up to a higher power now. Just don't want a prolonged sad thing to play out with my sister and then to have it worsened by such ugliness. Talking to my psychiatrist on the phone in an hour to see how to avoid the parents as much as possible since they are care-taking for my sister and at the same time support her (bizarro combo---like you said, lose-lose). The psych. can't change my parents either. No one can really do anything probably, but like you said, at least I do have people who understand and care.

    So wonderful you supported your neighbor with her cancer and so sorry she made such a terrible comment about your illnesses. It's bad enough to go through our myriad of illnesses as it is and then to get these comments is ______. No words for it....terrible, unspeakable, etc. The constant "education" we have to go through is not something we are supposed to do when we need to focus 100% of our attention on getting better.

    Honestly, I feel like if someone wants to know about fibro/CFIDS, etc, there is plenty of information at their fingertips at this very website and others too. It's an excuse. I have had friends/family diagnosed with things I haven't heard of or didn't know much about, and I looked up their condition so I could learn more.

    I'm so glad that you were able to repair your relationship with your neighbor. That speaks volumes about how amazing you are and your strength of character. Thank you so much for your prayers and kind words of support and encouragement. It is so appreciated. Praying for you also for your health and well-being.

    Love, Erika