Home Forums General Discussion family member issues anyone?

  • This topic has 15 replies, 11 voices, and was last updated 14 years ago by Kim.
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  • #303744
    casey
    Participant

    Does anyone have any issues with family members because you have chose to treat your illness differently than they would ? Like  AP , diet change …etc etc? Do any of your family members cut you down to the point that it is so stressful to visit any more than 1 day ( and thats even tough)? Has anyone had a family member tell you your illness is all in your head and in my situation , that i  will kill my child  faster because i chose this path?

    Thanks so much,

    Casey

    #343597
    lynnie_sydney
    Participant

    On Casey, I am so sorry that you are having to contend with that in addition to everything else. That must hurt so much. In my case, my Mother has always refused to discuss my choices, (she has severe rheumatoid) but doesnt try to influence me or belittle me. And, having read your post, I am going to start feeling more grateful for that. I'm sad that there's nothing we can do except remind you that there is a whole RBF family here to support you. I know that is not even close to being what you want or need, but it is something. Thinking of you Casey. Lynnie

     

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #343598
    Trudi
    Participant

    Some friends and family have a hard time understanding the herxing.  They wonder if the doctor truly knows what he is doing.  Sometimes there is ridicule involved, but I think it stems from frustration because frankly noone wants to see me in this condition.  My healing can't come fast enough.  Unfortunately, it is going to take some time :(.

    Take care,

    Trudi

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #343599
    maz.aust
    Participant

    I agree – in the beginning my HB thought I was talking a whole lot of rot, then when I started herxing he was sure I was out of my mind .. but, only told me that once then left it alone & let me go on my own path.  It's now been over 12 months & I actually heard him say to someone else, when they were discussing my treatment, that he had changed his mind & that although he didn't understand what I was doing he couldn't remember the last time he found me pacing the floor in agony so he thought it was a good thing & he was all for me continuing.

    Perhaps you could just acknowledge their concern & ask them to trust your judgement for now.  Remind them that you are doing this with the help & assistance of whomever your medical team is & that it's better to do what you want than be left wondering if you should have tried it – of course if it works the treatment will speak for itself & they can all eat their words.

    Good Luck,
    Maz – Aust

    Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
    Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

    Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
    1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
    1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

    All off days Probiotics

    #343600
    Parisa
    Participant

    I think when you are dealing with people like that it's best not to discuss the treatment you are following or the illness.  They can't understand how the illness affects you and this treatment is not a standard protocol so that's out of their realm also. 

    #343601
    maz.aust
    Participant

    as usual doubled up my post … apologies!

    Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
    Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

    Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
    1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
    1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

    All off days Probiotics

    #343602
    Kim
    Participant

    Casey,

    I'm so sorry people that you'd hope would be supportive are being hurtful.  These are very lonely diseases and when you choose AP you narrow the field even more for support which is why people rely on the board(s) for encouragement and questions.

    We expect a lot from our families and it hurts when they're not there for us, especially when we always are for them.  Such is life, I guess. 😕

    I've told you my sister also has SD/Lyme and is not doing well.  Her husband has convinced her AP is nonsense and she needs to do what her local docs are telling her to do which is not working and she continues to decline.  She's always been one to do what she's told and not make waves so the thought of her standing up to her doctors and swimming upstream is just not her.  She is upset with me for doing well and I've given up talking to her about what I think she should do.  She has all the information and books and it's her choice.  It has really put a strain on our once strong relationship which saddens me.  We'll all be together for a family wedding in Dallas soon so it should be interesting. 😕

    From what I understand you and your son are doing quite well so good on you. 😉

    Take care…..kim

    #343603
    Todd WI
    Participant

    Hi Casey,

    Sorry to hear you are getting resistence from family. From the outside looking in we probably all look like a bunch of wacko's, but from the inside the view is clearly MUCH different. We all face the possibilty that there will be consequences from choosing the wrong path.  You obviously need to keep doing what you think is best for yourself and your son.  Hopefully your family will understand and accept your decisions, but I'm not sure they will ever fully understand from the outside. On the plus side, your family obviously cares very much, otherwise they wouldn't bother.   

    Wishing you well

    Todd

    #343604
    Suzanne
    Participant

    We have always had the total support of our family members, but maybe that is because they saw for their own eyes how sick she was and how she responded to abx.  They saw what we saw (my daughter was initially treated for osteomyelitis) when we were doing what the 'mainstream' doctors advised.

    When I wanted to try AP, based on that experience, we were encouraged by all as it was the only thing that made sense.  They cannot comprehend how difficult it is to find this treatment for a young child!  They cannot understand why her doctors from the beginning wouldn't keep treating her with what was helping.

    I get more grief whenever we try a traditional med.  When the Black Box was added to the TNFs for cancer in children, we received calls and e-mails from family and friends all over (in case I might have missed it LOL).

    Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

    #343605
    mkbeeliever
    Participant

    [user=9]casey[/user] wrote:

    Does anyone have any issues with family members because you have chose to treat your illness differently than they would ? Like  AP , diet change …etc etc? Do any of your family members cut you down to the point that it is so stressful to visit any more than 1 day ( and thats even tough)? Has anyone had a family member tell you your illness is all in your head and in my situation , that i  will kill my child  faster because i chose this path?

    Thanks so much,

    Casey

    Casey….I'm so sorry about the lack of “buy in” from your family.  People fear what they do not understand.  People tend to be behind things they “get.”  For example, I don't know anything about Chinese Herbal remedies or Acupuncture.  So immediately when a doctor suggested this treatment for my mom I became very resistant.  Thinking…”oh boy, this guy's a wacko!”  The key to getting people to “buy into” something is education.  They need to take the time to know what you know, listen to you and understand the different philosophy. Maybe after that, they'll support you.  Ignorance produces a lack of faith and an unsupportive attitude towards others who are bought into a certain thing…in this case your chosen path to recovery for your son and yourself.  Until they come around, lean on us for your support.  Hopefully they just love you and your son so much that they just want the best for you and the best in their mind is not what you have chosen.  So in essence, they're trying to “sell you” to their point of view and get you back on their side.  It's all FEAR of the unknown.

    My brother has Crohn's.  BAD Crohn's – I have been feeding him information little by little about AP for this disease.  He is still is ill educated because he doesn't take the time to read what I send him and he puts all his trust in his gastro doc who told him there is no data for AP helping Crohn's all by itself.  But, the guy put him on short term Flagyl recently after a horrendous flare.  My brother is considering switching his primary care doctor to my mom's who is the one that prescribes mom's antibiotics.  We think my brother is doing this to possibly try the AP route because he knows this doctor has an attitude of “nothing ventured, nothing gained.”  We'll see….It's been very slow going and at times he's basically told me I'm nutty.  Not nutty with what I'm doing with our mother but nutty when it comes to AP and his disease. 

    Blessings,
    Michelle
    P.S. this may not have made much sense to you, I tend to ramble and it may not have expressed myself clearly.

    #343606
    casey
    Participant

    All of you will never know how much i love and appreciate how you help me! You people are my rock and i know when i post here for info or “therapy” , there is always someone listening and i thank you  all so much  all for that.

    My situation just keeps getting complicated. My mother and father live 3 hrs away. They are elderly. They cant look after their own home but will not move.They expect me there often. When i go there we are constantly put down because we eat differently, we live differently, we chose AP etc etc etc. My parents cause so many arguments that i just dont go as much because it is too srtessful to deal with them. My mom is very sick with lupus and actually just got a call from a recent mammogram that they found “something” on both her breasts. Her kidney function is deteriorating and get this, dialysis is a 3 hr drive for them in which neither can do that. But they wont move and they make me feel guilty because i am not there and heres the worst part. I DO FEEL GUILTY because i just dont want to be there. I do love them and try to help but i am sick of being the bad guy. You know , i got her a AP doc and she was put on mino. She wont change her diet, lives off pop, processed meat ,sugar, 2 packs a day cigs, refuses probiotics etc etc.( Actually they dont believe she has lupus and thinks that its just aging.) Well she is going downhill .  i guess so!!! When i do visit  they make an issue about everything to the point it affects my , my sons and my hubbys health. They rub in that theres nothing wrong with us, and none of these diseases really exist. We actually stay quiet, mention nothing about us because we dont want to rock the boat.So whats really been bothering me and this may sound like i am a cold terrible person, is that i feel guilty because they are my parents and i dont want to go but on the other hand , if i dont go i will feel guilty when they pass on so its bad either way. Guilt , guilt , guilt!!

    You know, i dont feel guilty about how we chose to deal with our diseases. We are better, not quite in remission  but definitely better and i thank you all for being part of that. I also want to say  my heart goes out to others here who go through or are going through similiar things like this because disease is enough but it just makes it so much harder when added stress comes from other directions.

    Sorry for the long blurb but i need to vent. And thank you all again, you have no idea how much you are appreciated!

    Hugs,

    Casey

    Oh i need to add that my father is a control freak. There is NO way if its not HIS way and he tries to make sure you know it!
     

    #343607
    Cheryl F
    Keymaster

    [user=9]casey[/user] wrote:

    Does anyone have any issues with family members because you have chose to treat your illness differently than they would ?

    Our family member who first saw Jess' Raynaud's, a Nurse Practitioner, is almost hostile to me since I told her of our plans to fly to Boston to begin AP.  She said, “oh yeah, I have heard of that, it doesn't work” and “when she (Jess) gets sicker, I have some good doctors that I work with.”  She works at a leading teaching and research hospital, they know it all!  And if you don't do it their way, you get dissed!

    Cheryl

    #343608
    PhilC
    Participant

    [user=40]Kim[/user] wrote:

    I've told you my sister also has SD/Lyme and is not doing well.  Her husband has convinced her AP is nonsense and she needs to do what her local docs are telling her to do which is not working and she continues to decline.  She's always been one to do what she's told and not make waves so the thought of her standing up to her doctors and swimming upstream is just not her.  She is upset with me for doing well and I've given up talking to her about what I think she should do.  She has all the information and books and it's her choice.  It has really put a strain on our once strong relationship which saddens me.  We'll all be together for a family wedding in Dallas soon so it should be interesting. 😕

    Hi Kim,

    If it comes up, I have a simple message for you to give your sister: “It's not rational to keep doing the same things and expect different results. If you keep doing the same things you've been doing, you're going to keep getting what you've been getting, which is worse.”

    I'm not sure if it will help, but it's worth a shot.  Don't be too quick to spring it on her, though. If you can, wait until she's in at least a partially receptive state of mind.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #343609
    Kim
    Participant

    Thanks, Phil, I've basically told her just that and now she's just resentful.  When she was first dx'd my heart sank because I felt in my heart she didn't have the guts to go rogue with AP and wouldn't be willing to do the hard work of correcting things on every level.  She wants the quick fix with the magic doctor and the magic pill to do it for her and every doctor she sees is more than happy to write scripts for pain relief.  I pushed hard for to go see Dr. K. in Texas, which she did and really liked, but she's not following Dr. K.'s treatment plan.  She'll pick and choose the parts she wants from each doctor, and of course none of these doctors have coordinated anything, so she's playing Russian roulette.  She can't even tell you why she's taking certain drugs, just that some doctor thought it would help at some point in time.  Ugh……..makes me crazy. :headbang:  I swear, half of her symptoms are from drugs that she shouldn't be on in the first place, given to her by irresponsible doctors.

    She is the prime example of why it's so important to be your own health advocate and learn to say “no” to doctors who only push drugs without a plan to actually get you better.

    Take care…..kim

    #343610
    casey
    Participant

    Kim, your above post sounds so familiar as to what is going on with my mom. I visited yesterday and saw how much she has gone downhill in even just the last 3 weeks since i seen her. Its terrible just to watch this disease progress in her and so sad to watch someone you love slip away suffering so badly .

    Phil, you are so right about what you said “if you keep doing the same things you've  been doing  your going to keep getting what you've been getting , which is worse.” This is so very true and that paragraph  actually made me think deeper into my situation.  My mother has never listened to much of anything that i have tried to help her with. Having said that has actually helped remove so much guilt i was carrying. Guilt i shouldnt even have carried in the first place. Now i carry the sadness but i am done with the guilt.

    Thanks,

    Casey  

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