I am so mad, my heads about to blow off!!!!

Discussion in 'Fibromyalgia Main Forum' started by afeni, Apr 10, 2003.

  1. afeni

    afeni New Member

    I am so mad, I think I got an instant migrain. I am so fed up with docters and schools and everybody in my life that has anything to do with school, of hospitals! I've just gotta vent...


    Today I finally got in touch with the patients rep at my hospital. I need to change my daughters rhuematologist. I was not happy with the treatment I was getting.

    So the chief of the rhuemys calls me back. I won't go totally into detail, but I will give you the main things he said that got me fired up.

    Now, in the beginning of the conversation, I told him I had fm too, and had had for about6 yrs. I told him I didn't think she was listening to me or my daughter and My daughter wasn't getting the help she needed.

    He told me that a pill isn't a cure for problems from fm.
    He told me she wouldn't be getting narcotics. She has to go to school. I need to communicate more with the docs. I need to take her to her primary more.

    Ok, I told him that I knew a pill wasn't a cure, thats why she has changed her diet, why she goes to physical therapy, why she sees a pain shrink. I also told him my daughter has a pain diary, where she rights problems, thoughts and questions down to take with her to her appointments. And I wasn't looking for narcotics, but relief, so that she could function in school, instead of having migrains all the time.
    I have seen her primary, he sent me back to her rhuemy, I discussed meds with her shrink, he sent me back to her rhuemy. I have been talking til I'm blue in the face, and going in circles. I went to her school to see what they could do to make it easier.

    Then her school admin calls, and says she has missed 52 days of school, and she needs to be doing homebound schooling, but homebound people say no homebound until docs say she needs homebound. Meanwhile my daughter is failing out of school. I have to provide more proof that she is indeed sick, The proof I've already provided is not good enough of course. I have to sign a contract saying shes got to come to school and can't leave unless the school says so. She tried to call for some meds today, but they wouldn't let her in the office, so I could bring her some medication.

    And my husband who hasn't been the one going to appointments, and calling docs, and talking to docs and the school, says I should just let it go, and not think about it. I'm so pissed of, I'm surprised my head hasn't exploded.

    So far, I've cried, yelled, and just fussed and fussed. I can feel my fm flaring up from the stress.

    I know that its something I have to go through, but I just want to know why so many docters are ass holes!?!
  2. kadywill

    kadywill New Member

    so very sorry. It is bad enough for us to deal with our OWN pain and fatigue, but our children's problems are something else, altogether! I don't know what I'd do. You probably feel as though no one is hearing you and that's a horrible feeling. It sounds like her doctor is going to have to sign whatever necessary to declare her homebound....at least for now. I know that parents are liable when their children miss school. I feel so sorry for your child. Adults have trouble handling this; children NEED a childhood and hers has been taken away. I am so sorry.
    Love,
    kady
  3. wolflake46

    wolflake46 New Member

    Afeni,

    A good Rhuemy is hard to come by. I told my neurologist I wanted to swith because I wasn't going to go back to that asshole again and she said she would get me a referral. When I got a call from the clinic they hooked me up with the same one again. Does no one listen to you when you talk to them?? It has been 7 months without one now and I can't locate one. Why are they so hard to come by. The one I was seeing his wife has FM I wonder if she gets any sympathy from him or if he treats her like he treated me. I hope for your sake and your daughters that things get better for you. I'll be thinking of you.

    Diane
  4. ForeverFlaring

    ForeverFlaring New Member

    It is hard enough for you to deal with your own fibro but to deal with your daughter's must be triply stressful.

    I have had fears of my own daughter having this. She is only 8 years old, but has some classic symptoms. She has "growing pains" everyday. She also complains of headaches, fatigue, and overall pain. My heart goes out to her and I have asked God to take it from her and give it to me. What the heck, I already have it.. a bit more cant hurt.

    My suggestion to you would be to get a lawyer on your side as far as the school is concerned. If you cannot afford one your local legal aid should be able to help. I would also sit down and write down everything that has happened so far to the best of your ability. Once you have gathered your thoughts I would write the same letter to each of her physicians explaining the whole situation. It is useless for them all to be passing the buck on the other one. It is a waste of time and more importantly, your daughter's well being. Send this letter out to everyone involved in her care and keep a copy for yourself. All too often when a person is being treated by several different physicians there is a huge lack of communication. Unfortunately, you and your daughter are the ones suffering the most. Make sure everyone is on the same page with your letter and clearly explain what it is that you want. A calm, rational letter is much easier on the ego of a doctor than a furious mother screaming in the doctor's face. (I would be ready to scream too)

    After you write the letter and clearly state what kind of expectations you have for your daughter's treatment, they cannot tell you that you are not verbalizing well enough. You then have every right to take whatever actions are necessary if the proper treatment is not followed.

    I hope this helps a bit. I will pray for you and your daughter for peace and a resolution for all of this madness.
  5. afeni

    afeni New Member

    I know that I need to calm down, so that I can plan my next step, (The letter is an excellent idea) and I am trying to give myself a break from steaming. But my daughters first year of high school has been hell. And I'm so tired of feeling so helpless all the time.

    I just wish I could take some time to rest and get myself straight, but no rest for us warriors. We have to fight to the last breath don't we..

    And honestly, I have been in hell for the last year over and above the fibro. I am hanging on by an invisable thread that can't be anything but God.
    Because I really can't see how I've gone on this long.
    Gotta stay strong for my daughter.

    Thanks for the love, Afeni
  6. Debbi

    Debbi New Member

    i'm just wondering if your daughters screen name is Fi I am 12 y/o with a parent with Fm - if this is not Fi, plse feel free to have your daughter contact thru my mom here
    thanks KC
  7. kar1953

    kar1953 New Member

    that your daughter's docs are giving you such a hard time about her being homebound schooled. My husband is a school teach & I can't count the number of high school girls he has tutored because they were pregnant - not because they had some incurable, very painful, often debilitating disease. Your child should be tutored at home - not made to go to school & then denied access to you for her meds. My husband did tutor one girl last year who had FM. She had migraines every morn. & so stayed home.

    Writing a letter to each of her docs is a great idea. That way you can gather all your thoughts together over a period of time & get your point across in a non-confrontational way. I don't blame you one bit for being so upset. I would be too.

    Best of luck to you & your daughter. I will be thinking of you both.

    Kathi

  8. CPRN911

    CPRN911 New Member

    As a medical professional...it is my "professional" opinion that the capital "A" description is applicable because....for the most part..in med school they are NOT taught to listen...factor in the God complex...and there you have it!!! and....far be it for them to admit they don't know something...and then research it to HELP their patients...nope...just easier to TURF you around...have any of you noticed that PA's and NP's seem to LISTEN more and help...ever think about it...we wouldn't have such a high cure rate on cancer if patient's had been "blown off or turfed around"...just cause there wasn't something a doc could see...but then...cancer kills...and the perception is our disease doesn't...and for the most part...I can speak to this since being around it...and any other nurses on this board I'm SURE have heard the same thing....people with Fibro/CFS are just looking for drugs...MY A...ever wonder why MS, Lupus and RA seem to get more attention from the medical community than FMS/CFS?? Have you explored an alternative .... naturopath maybe??
  9. Bambi

    Bambi New Member

    into the pain specialist I go to and also to
    another pain specialist in the building. You
    might try one. They treat PAIN and it's really
    not too important what the age is. There are
    other things to try before narcotics anyway,
    they are doing all the anti seizure meds and
    various anti depressants, etc..where she might
    get the relief she needs without the narcotics.
    I'd go easy on the Ibuprofen, Vioxx or any of those NSAIDS though. They start a lot of people
    out on them and then you can end up with an ulcer and often permanently messed up stomach on top of your FM pain. I know! GRRRR! (NOT everyone gets ulcers from NSAIDS but it is common)Good lucK!!
    Hugs, Bambi
    [This Message was Edited on 04/11/2003]
  10. TNhayley

    TNhayley New Member

    I just wanted to add that if you do write letters to all you daughter's doctors ... you might want to consider including your child's principal, teacher, school board members, city councilpersons, and your Congresspersons and Senators. I know that sounds over the top, but a lot of these people might be able to help you ... and it never hurts to have people in authority CC'd in the letters for all to see ... sort of adds extra peer pressue to the mix. Stay rational and calm and as factual as possible. Good luck and please keep us posted on your progress.
    Warm regards,
    Hayley
  11. nancyw

    nancyw New Member

    Hi Afeni: I can so relate with you about school, docs, shrinks, etc. I just had the world's worst new doc visit that other day and posted about it because I was so mad and upset I didn't know what to do. However, it is different when it's you child. My son, who is now 26, was a terribly hyperactive child and it caused us untold misery - both him and I. He was eventually diagnosed with Attention Deficit Disorder. The school would send me to the docs, the docs would send us back to school with suggested meds, meds didn't work so school would take away his recess, lunch time, and put him in the corner. Not great for a hyperactive child. Joe had horrible migraines; he would suddenly scream and cry and grab his head, throw-up, and basically pass-out. Anyway, got a hold of an advocate who instructed me to keep a notebook of everything that happend. Sections of notebook were Daily Diary (his mood, headaches, what happened at school); list of medications; diary of doctor visits; diary of conversations with school; etc.). I took this notebook with me to every single appointment and they seemed to take me more seriously then. If you live in the US, you can get what they call an I.E.P. (individualized education program) for your daughter. It is federal law that EVERY child is entitled to an education despite their physical or mental problems and the SCHOOLS are the ones that HAVE to provide it. If you want more info, leave me a post and I will respond. Good luck!
  12. ForeverFlaring

    ForeverFlaring New Member

    This is a bit off topic but I wanted to say something about our school systems.

    Virginia is a highly respected state for the quality of schools. I moved there when my son was in the middle of kindergarten. What he accomplished in a half day of kindergarten from Feb to June is more than he accomplished from full days Aug to Feb in Florida. He learned to read within a few short weeks and I was incredibly impressed with the school system.

    Flip ahead 2 years. We were forced to move because we could not afford rent in that school district anymore thanks to this DD. We moved to an area that my son was the only white student in his entire class. He went from a 7th grade reading level to a first grade reading level (he was in 2nd grade). He made F's on his report card. He was labeled as learning disabled and a problem child. No amount of conferences at the school were able to help me or him. He barely scraped by in his last quarter and passed to 3rd grade by the skin of his teeth. We moved to Pennsylvania and they reviewed his IEP in August because Virginia had never finished it.

    Thank God they reveiwed it, according to the IEP he was to be placed in a special school for learning disabled children. I worked closely with the prinicpal of this school and told her he was a very bright boy at one school and suddenly a learning disabled child in another one. She ordered a barrage of tests to be done on him and a psych evaluation. The psych eval concluded he was very depressed and he began talking about suicide. My poor 8 year old son wanted to die and was considered learning disabled. I was beside myself with grief.

    To make a very long story short, after IQ testing was done and a barrage of state tests it was concluded that my 8 year old son was on a 12th grade reading and science level. All other levels indicated the intelligence of a 15 year old. My son is now 9 years old. He is NOT in any learning disabled classes. After rounds of counseling sessions and antidepressants, he is now a happy, well adjusted little boy.

    I shudder to think what would have happened to my son had we continued to stay in Virginia schools. He was a child nobody had time for, and it was much easier to label him as learning disabled than to find out the root of the problem. Unfortunately getting into a caring school system is luck of the draw. Well for me, it wasnt luck, it was Gods divine intervention.
  13. afeni

    afeni New Member

    Thanks guys.. I want to reply to each of you indivisually, so I don't miss anything.

    Debbi, No, thats not my daughter. She is 15 yrs old and currently failing the 9th grade. Should I have her write to Debbi?

    Cprn911, I am really interested in learning more about the natural path way.

    Bambi, Right now, narcotics aren't something I've even been giving alot of thought. I know that alot of narcotics didn't do anything for me but make me sick. I just want her to be able to feel better. I've been thinking about asking my pain doc, if my daughter can't maybe see him. But I go to a military hospital, so I don't know if they will go for that.

    TNhayley, I really need to sit down with my husband and discuss what my letters need to say

    Nancyw, I've already been doing a version of the notebook thing, maybe its time to revise it.

    foreverflaring, I've got to write you a letter, so I'm just gonna post it. Look for me on the board..

    To everyone, thanks for your info, and input. I really needed it. It really makes that difference.

    lol afeni