Home Forums General Discussion Phebagirl, back for my daughter.

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  • #299822
    Phebagirl
    Participant

    Good day from Phebagirl:

    I have been gone from this site for a few years.  I have had  MCTD since 1995.  I posted here for some time. 

    I have been seeing a chronic disease counselor.  he advised me to stop posting for a while so I could refocus my life away from medicine.  I am also a cancer survivor.  I had cancer in 2004.    I went through a total nightmare dealing with both cancer and MCTD.  However, I did get better.   When I got better I was still a mess mentally.  My counselor said I needed to stop dwelling on medical stuff.  So, no more posting for a while. 

    But, I am back now.   My daughter has just been diagnosed with fibromyalgia, rheumatoid arthritis, and ankylosing spondilitis.  She is just 30 years of age.   I am trying to help her.  It is harder to watch her with this disease than it is for me to have it myself. 

    I am wondering if there is some place to post success stories.  I still have the disease, but am doing well with it at this time.  I always wanted to post my success story with AP protocol, but my counselor kept me away from all things medical for a while.  

    Phebagirl

     

    #309110
    A Friend
    Participant

    If you see Cheryl Ferguson's name, click on it, and private messaging is available, I'm sure, to send her a private msg about posting your story. 

    If you put your mouse arrow on the bottom right arrow, you can go further to the right and see a link to RBF Home site at the top right of the screen.  After clicking Home, there should be a link on RBF Home site telling where/how to post your story. 
    Welcome back to the RBF BB.  So glad you are here.  Watch out for the stress levels with the worry you have concerning your daughter.   Stress is a lot worse on us than we can realize, and has far-reaching effects that we've never known about.  It is a big thing (I've learned just recently in the HCL article posted from rheumatic.org) in how our illness begin and worsen.  Seems we have to search out and address “everything” that is amiss. 

    AF

    #309111
    Phebagirl
    Participant

    Good day from Pheba:  Thank you for the information.  Yes I agree about the stress.   I have  not been sleeping since I have learned of her illnesses. 

    After the horrible visit yesterday to the “bad” AP doc I am even more upset.   I am trying to “cool my jets”, and concentrate on positive things.   I am having some pain in my arm joints today.  I know it is from stress.  

    Thanks again, Pheba

    #309112
    casey
    Participant

    Hi Pheba,

    Know you are not alone. I have a mother with lupus and RA, i have mixed connective tissue disease and my 13 yr old son has had lupus showing on blood tests and pos for mycoplasma. myself and son diagnosed 2 months apart last yr .

    I know about stress,anger, bitterness etc and i had a hard time every day wondering if i will beat this so i can help my child. It truly is a living hell having to worry about so much. As you said, bad enough for a parent to have these diseases but it is much harder to deal with with a child having it. Its amazing how many emotions you can come up with you never thought existed! And depression! Man oh man! I went through that one and still do occasionally but i HAD to LIVE with how to deal with this , not DIE from it.And that is exactly what i try to do now. I found this website and AP and all these great people all here experiencing many of issues of their own and….They are all here… Alive…and yes many of us struggle but i now try to focus on how we can live with this and not let it get me.

    Not to say this isn't easy to deal with. But we have to and we just do it. And we do it together by being here. On top of that, YOU have a success story to share. That is a inspiration to all of us and that alone should be positive for you and your daughter.

    I know how you feel and boy , its black down there in that hole. i was in it and i at first wasnt even sure i wanted out because i might have to face the world with all this.

    sweetie, i am not rying to minimize anything you are feeling but i do know, you successful AP'ers are what get me through every day and your daughter will be there right along with you. Try not to forget that.

    Prayers to you and your daughter,

    Casey

    #309113
    marg
    Participant

    Your daughter is lucky to have you and you will be able to help her. I know first hand that it is one of the hardest things we ever have to face seeing our dear children so sick. No matter how old…

    Take heart – she needs you and together, with the help of knowledgeable folks here, you will both be on the right road.

    #309114
    Phebagirl
    Participant

    Good morning to all:

    I can't seem to function without my brain letting worry about my daughter creep in.  She sits in the back of  my mind all of the time.  i am so frustrated at our experiences trying to get her the help she needs.  My old Ap doc sent her out of his office in tears.  He no longer believes in AP protocol, and told her so. 

    He also told her she was a liar.  Yes, this man called my daughter a liar, and he did not even know her.  I have asked his name be removed from the physicians list. 

    He told her she was depressed, and offered to write her a prescription for an anti-depressant.  Mind you, he had only met her 1 minute prior to this amazing evaluation.  She was depressed because I had built her hopes up for a treatment from this man, and in the most cruel manner, he dashed her hopes. 

    Then he offers a prescription for a dangerous drug she can't take.  My daughter had a horrible experience on an anti-depressant called Effexor.  Took her a year to be free from side-effects, and manic behavior is a side-effect of the drug.  My daughter is not bi-polar, but Effexor created bipolar type behavior in her. 

    My daughter also doesn't like doctors.  She hates them.  She was a hospital floor nurse for seven years.  She saw the horrible things doctors do to patients.  She covered for their mistakes, and watched as they lied through their teeth to cover their backsides. 

    needless to say, she has no faith in doctors.  After the horrible experience with my AP doc last week, I don't know how I will ever get her to try again. 

    I acquired a list of physicians from Richie, and not a single one of them in her area still does AP protocol.  I am totally lost. 

    My daughter wants to wait now until she sees my Rheumy doc on the 6th of March.  She is going to tell him that she refuses to take metho. and wants Remicade and Minocin.  I guess we will wait and see how that visit goes. 

    I am so frustrated.  I know what she needs and I still can't help her. 

    Pheba.

    #309115
    A Friend
    Participant

    PhebaGirl,

    I'm so sorry to read about your and your daughter's frustration.  With her being a nurse, it is not like she is without knowledge and the ability to understand.  Has she read “The New Arthritis Breakthrough”?   If not, I'm thinking that should be a priority… especially with her background.   

    Brainstorming here, but if what you wrote was true about myself and my daughter, I would be calling Dr. S in Iowa to discuss her case…. OR getting the telephone number and name, etc. of the other Dr. S who practices in an extreme southeastern state. (This one also has a rheumatic diagnosis, and has done extremely well for his patients.  He has also, in the past years, come on rheumatic support web site (don't have its web site now; it has changed) and answered questions and given suggestions about their treatment.  This web site is not rheumatic.org, but another.  You might do a search for “rheumaticsupport web site” and get information from them — if Ritchie or others do not have his contact information. 

    Am thinking Missouri is not that far from either of the above places.  I saw Dr. S in Iowa (all the way from Texas) every 6 months for 2-2/2 years).  It was a great decision for myself.  It is a charming small town, easy to get around in, and comfortable, clean, reasonable accommodations — and EXCELLENT out-patient  hospital and doctor care.   

    AF

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