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Aunt Diana
Moderator
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Posted: Mon Mar 6th, 2006 23:57 |
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I am heartsick about what is hapenning between my siblings and me about this protocol.
They have all aligned against me....are acting like I've lost my mind....and are all in agreement....three against one....I am the oldest.
Does anyone else have this problem?
I am totally devastated by the lack of support....I've actually received close to "hate mail" by "mistake".
I don't know if I can continue without some hope of acceptance from my family at some time in the future...HELP!! I need some encouragenment and advice.
the way things stand right now I'm not talking to any of them...thank God I have two good friends who are all for this (the MP)
I'm next to suicidal over this. I'm probably having an emotional herx ...but this is more than that.
Does anyone have any words of wisdom....I desperately need them now.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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Foundation Staff
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Posted: Tue Mar 7th, 2006 00:29 |
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Diana,
I'm sure your siblings are concerned about your health and have your best interests in mind. You might point out to them that you are under the care of a licensed physician and you have placed your trust in his/her regarding your treatment plan. It is inappropriate for them to second guess a doctor's recommendation and they should refrain from undermining your doctor's orders.
Hopefully, your siblings will accept that they don't need to understand what you are doing or why you are doing it. If they cannot give you their support, ask them to agree to disagree and avoid the subject in order to keep peace in the family.
Siblings are a treasure but your health is just as important. I hope that you and yours can work this out. Perhaps they will come to understand as your condition improves.
In the meantime, look to your friends for the support you need.
Best,
Meg
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Aunt Diana
Moderator
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Posted: Tue Mar 7th, 2006 01:19 |
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Thank you, Meg.
I know you are right. It's difficult to withstand these attacks when one is not feeling well.
I will go forward with resolve....I don't have any choice....and I'll deal with my family when I am well.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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Lantern
Guests visiting Phase 1/2/3
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Posted: Tue Mar 7th, 2006 01:29 |
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Diana,
This is a terrible situation, I really feel for you. Family are who we look to for unconditional support and when they turn against you it's absolutely devastating. Unlike friends, we want our families to always be there no matter what.
Can I ask, have they been supportive of you before the MP? Do they understand what you've been through with your years of illness - have they seen how hard it has been for you?
I don't know if this is a good suggestion or not, but it's the only thing I can think of; how about writing a letter to your siblings detailing what you've been going through, and what the MP is. Perhaps if you explain that you feel it's your only chance for recovery, they might be more accepting. I can only think that their reactions are because of a lack of understanding, and/or a reaction to your changing role in the family; has your compliance with the MP changed how you interract with them? Or does the thought of you actually getting better frighten them, as it means you won't always be the "sick older sister" whose role they have been able to rely on for so many years? I remember a friend telling me about how losing weight - no longer being the 'reliable chubby friend' - changed a lot of relationships for her, including with her family, they started being very unsupportive of her weight loss as she became healthier and more independent.
If you want help writing a letter I'm here!
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CFS IBS Malabsorption Hypothyroid Rickettsia. Ph1 Apr06, Mod.Ph2 Oct06, Ph2 Feb07, Ph3 Aug07. Endep T3/T4 Panadol. NoIRs, homebound in low lux. Apr07 1,25D=15.4, 25D=13.6
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Tobi
Member
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Posted: Tue Mar 7th, 2006 01:35 |
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Hi Diana,
I'm not certain whether the animosity you are getting from your family is because they do not understand the illness, or whether it is specifically because you've chosen to follow the MP above any other course of tretment.
Although I've had good family support I have had some of this animosity or rather annoyance and scepticism during the course of my illness from a couple of friends. One in particular asks me why I don't go to a "proper" neurologist and get a "proper" diagnosis, like her friend did who has MS and stop "messing about". What was very useful was the "Literati with Lyme" video which I emailed to them and got back "now I understand" messages. They were both then able talk to me reasonably about why I had chosen this particular treatment.
It's possible that your family is frustrated with your apparent reluctance to just get "proper" medical attention and get well already - of course I don't know your family and there could be many other agendas and complicated history. If your offer to provide information and to explain your treatment falls on deaf ears, you'd do well to focus on those more likely to give you support. How difficult and upsetting this must be for you.
Tobi
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CFS,Rickettsia Conoori-,HHV6,Ureaplasma(all 3 culture,PCR) 25D 16.4ng/ml,1.25D 26pg/ml.Ratio 1,3 Blood probably NOT frozen Benicar 9/18/04 Mino 100mg 10/18/04 Phase 2 01/26/05
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Carole
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Posted: Tue Mar 7th, 2006 02:10 |
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Hello, Diana--
I'm sorry to hear that you are not receiving support from your family, but please understand that the "unknown" often leads to skepticism and concern, especially from those who care for you.
Nevertheless, you need to remain firm in your "educated" decision. This is your only safe alternative to become well. I agree that as you progress, your family and friends will recognize your improvements. Through your words or how you appear, it will be obvious in time that your body is healing.
Your positive attitude and demeanor will speak loudly and clearly that you have the strength and fortitude to continue. Don't give up or give in. Be patient and know that time will heal all.
Take care . . .  Carole
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PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story |1/04 1/06: 125D=85,34; 25D=41,14| AC
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Alayne
Member in Phase 3
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Posted: Tue Mar 7th, 2006 04:10 |
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Oh Aunt Diana,
Firstly, let me tell you how sorry I am you're in this position. I agree with others that your siblings are probably very worried about you, but are obviously having great difficulty both understanding or believing in the MP and its necessary lifestyle. I also recall your saying that you have a brother you basically raised who's now an MD. His pooh poohing of the MP has probably influenced the others, and I know has already hurt you deeply.
You’ve had Lyme for a long time now, and they’ve seen you both ill and maybe acting strangely at times. They’ve probably heard you talk about many other treatments with great enthusiasm, only to see them fail. They’ve probably done some roller coastering with you, whether or not they wanted to. And now, you’re on a treatment that many of most well-intended people have difficulty swallowing. Just as so many of us have had to experience that “last straw” of our illnesses to start this protocol, the MP and its lifestyle requirements are probably the last straw for some of our families and friends.
The last straw for them until we are better. For many, that’s what it’s going to take for them to believe. Nothing else will suffice. On top of that, some will probably label our recovered health as spontaneous remission and never believe in the MP at all. The point will be, however, that you have recovered.
I have many doctors in my extended family and one recently sent an article about CFS to my parents and they sent it on to me. I realized that the highlighted paragraphs were the ones discussing the possibilities of psychiatric causes and related treatments. This is the most "forward thinking" and kinder of my MD relatives, AND, he knows I’m on the MP. So needless to say, I've not told, nor will I attempt to tell, my extended family about this until I'm much stronger.
However, I'm very fortunate that my immediate family hasn't rejected the MP. They're just biding their time and helping me out financially as they wait. That said, my brother has CFS and still doesn't believe the MP is for him. My sister is displaying signs of a compromised immune system - won't discuss the MP for herself, and so on. But at least they haven't said I'm "nuts" in front of me (highlights or not), although I know there have been many discussions of how “sane” I really am.
Right now Diana, your healing is what's most important. As much as having your siblings' support would help, they cannot cure you. Only the MP can, and I think you know that.
Some suggestions with dealing with them based on my own experiences:
*It may be best that you don’t speak with your siblings for a while, until you have something quite positive to talk about – I mean positive for them.
*If you do communicate, try not discussing the MP with them. Search for anything else to talk about other than health topics relating to you and the MP. I know that’s not easy when one is living in a cave and life is so different. What I’ve done is start reading news and feature stories online and writing down topics that interest me and that I know will interest others. I take some notes, so that when I talk to them, I’ll have something entirely “non-health” related to say. Or I send out little emails discussing the non-health-related topics.
*When they ask if you’re still following that “d*mn treatment,” you can try lightly saying something like: “Oh you. I’m just taking good care of myself and things are progressing pretty darn well.” And leave it at that.
*Or when they make fun of the light avoidance, try making a joke and say something like you’ve never been more beautiful to your husband as the lighting’s always romantically low these days.
People can get quite aggressive with their questioning, however, so I’ve found that changing the subject as quickly as possible with good humor is often the best thing to do. I often turn the conversation into questions about them – most folks like talking about themselves more than listening! 
Most of my friends stopped calling me once I told them about CFS, bacteria and the MP. They all asked the requisite, “Can I help you in any way?” then disappeared. I’ve had to initiate ALL contact with friends since starting the MP, and am down to two who sometimes return my calls or emails. They’ve only known me as being sick, so the subject’s not an exciting one for them. I’m only too happy to discuss something else with them anyhow; it makes me feel more “normal” talking about other things. However, I do have one main support and don’t know what I’d have done without him – my BF. He hasn’t questioned my doing the MP once.
If you have that kind of support with your husband and two friends, that’s wonderful! I try to concentrate on the good stuff these days. On how fortunate I am that I’ve found the MP, that I’ll one day know what “healthy” feels like, and that I’ve a loving man who’ll stick with me, and a family who will eventually welcome my recovered health when it happens – no matter if they believe in the MP or not. There’ll be many bumps along this road, but what road doesn’t have at least a few bumps?!
Diana, eventually your siblings may come around, or at least ease up on you. You’ll probably have to work hard at that if you want it, no matter how unfair and painful it is. Families can be such complex beasts on the best of days…throw in illness and watch out! But with or without your family’s consent, you know you have to do this. For now, the most important thing is for you to take care of yourself - not for them, not for anyone, but for you. We all deserve this second chance and you’re well on your way in attaining yours. Rejoice in the fact that you’ve finally found the answer. The rest will follow…somehow and maybe in very surprising ways. Promise.
All the best, Alayne
P.S. Anyhow, do you think any of your siblings would have the guts and strength to go through what you are? Probably not, eh? It takes a great strength and determination to do this and you should be proud of yourself.
P.P.S. I'm so sorry I stink at editing these days. Do hope I haven't hurt your eyes.
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Aunt Diana
Moderator
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Posted: Tue Mar 7th, 2006 15:15 |
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Thank you Tobi, Carol, Shadowzone and Elaine et al for your words of wisdom.
I'm having a bad day...a bed day....so as I lie there I will contemplate all of your messages. You have uplifted my spirits and I no longer feel so alone.
Bless you all and this wonderful website.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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CLefelt
Member in Phase 3
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Posted: Tue Mar 7th, 2006 16:22 |
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Aunt Diana,
I haven't received the kind of aggressive hostility from friends or family that you're experiencing -- just a lot of repeated skepticism. Friends will ask the same questions and voice the same criticisms and concerns over and over about the MP, no matter how many times I try to clarify.
So, I just mumble something and change the subject. Because they're not family, I don't take it that hard.
I don't have much close family. My thirtysomething sons have become kind of indifferent and/or impatient beccause of the many different treatments which have failed for me. I find that pretty hurtful.
I keep telling myself, as the others do, that I have chosen to follow the MP and that I must focus on myself and take heart from my husband, who's tried so hard all these years to support any and all treatments that offer hope, and the few friends who just want something to work and hope that this will be it.
I have no words of wisdom. Just reassurance that others are in this with you, and that we are thinking of you and hoping your siblings will realize what you're going through and how much they could help you by admiring your courage and commitment.
All the best,
Carol
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Lyme Bartonella CFS FM Chly Pneu; Klonopin Florinef Lexapro TriEst Prog 10/04: 25D=9 1,25D=70 4/05 4/06: 25D=6.2 1,25D=20.9 8/06:25D=<7 1,25=13; Mino 11/36/04 2Abx 3/19/05 3Abx 4/27/06
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paulalbert
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Posted: Tue Mar 7th, 2006 17:01 |
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You know, there are a lot of scams out there in the field of medicine. One book on the New York Times bestseller list, which touts different cures, can charitably be called a scam. (The infomercial is kind of a tipoff.) Family members have a right to be skeptical about new treatments that promise so much.
Why is the MP different? Dr. Marshall and company have made a series of hypotheses from the original pathology of TH1 illnesses to the mode of action of Benicar. On this board and in other forums, he has offered specific and scientifically logical refutations of contradictory explanations.
Most importantly though, his predictions are testable. They are well-documented, highly specific, and all of them could conceivably refuted by experiment. To me, that is the beginning of good science. That doesn't mean Dr. Marshall is necessarily right, however, even the most skeptical among us would have to admit that this man has done everything possible to use all the conventions of the highest level of science. I think Dr. Marshall would rather die than be on an infomercial.
As a treatment option and theory, the MP is rather young, but I would expect in the coming years molecular biologists are going to take their best crack at it (as well they should). If and when they fail, all of us and our respective family members can return to what we arguing about before. For example. "I think your sweater is ugly."
Paul
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Diag CFS 6.03 / sympt since 9.02 / exercise, food intol, sleep prob / 1,25D: 16, 4.06; 1,25D:27, 25D:26 7.04; 1,25D:43, 25D:6 6.05; 1,25D:17, 25D:8 8.05; / MP: 7.04 / Ph. 3 / Bacteriality
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Vicki SA
Member in Phase 3
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Posted: Wed Mar 8th, 2006 08:22 |
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G’day Diana and all,
This is certainly a topic a lot of us can relate too! I also have been getting some negative feedback from friends. I am getting the idea that they are going with the idea that I am indulging in ‘self limiting’ thought patterns. Avoiding sunlight FOR your health just seems to be more than people can accept!
I wrote a ‘letter’ to try to help them understand what I am dealing with. I haven’t actually given the letter to anyone but I did show it to my main supporters (Hubby and son). I really need to be sure that they understand LOL.
Anyway the first paragraph gives a bit of a progress report on the MP and an overview of the treatment and how the illness is using the 1,25D etc, CWD bacteria and what a herxheimer is.
Para 2: I say how I would never have the confidence to try this without my GP who thinks that this is a suitable treatment for me.
Para 3: I say how I am not finding it easy and how it is isolating and then comment on how my illness has already forced huge changes in my life.
Para 4: Gives them the facts about my illness (ME/CFS) and the World Health Organization classification as an organic neurological disorder in 1969 (people with ME/CFS have to deal with people all the time as they think it isn’t a REAL illness!).
Para 5: Gives a brief history of my illness to remind them that I used to be a very active outdoor person and then goes on about the need for pacing any activity as ‘post exertional malaise’ is the hallmark symptom and that while you might be able to do more on a particular day, it just results in more ‘down time’ later to allow recovery. Then raves on about the multi system illness etc. and how coping with this illness is the hardest thing that I have ever done in my life (I didn’t say that I have achieved far more than most before I got ill LOL). Then I added how doing the MP and being outwardly ‘peculiar’ (wearing NoIRs, avoiding light and any outdoor activities) is a further isolating and alienating experience.
Para 6: goes on about being lucky to be able to still work and how I am able to do that and reinforces the huge changes to my life and the things I do to cope with the symptoms at work.
Para7: Tells them any small improvements from the MP that I see as encouraging signs.
Para 8: Tells them how to survive with a chronic illness, you need to accept your illness and how at this stage of my illness I don’t necessarily have a need to talk about my illness and how on a social occasion I want to escape from my illness!
Para 9: Tells them that I am happy to provide info about my illness but that I am not prepared to spend my energy justifying either my illness or the MP as a treatment. And then finishing with that I do appreciate their compassion for what I am dealing with and happy to give a bit of a progress report as long as they realize that the MP is not a quick fix and any improvements are not likely to be terribly obvious over short time periods.
So as you can see I have gotten all my emotion down on paper and even if I never actually give to anyone I have thought my responses through so when I find myself feeling attacked about my ‘maladaptive belief systems’. I will hopefully be able to come up with a suitable response to increase their understanding that I am not ‘tired all the time’ but ‘ill all the time’ and doing my utmost to deal with a very difficult illness.
One of my long term friends (who when I was well I had no trouble running rings around in physical activity although I am over 10 years older) said in a very animated and disbelieving tone, “what you would actually give up a trip with wonderful opportunity for social interaction??!!” when I was trying to explain that it was impossible for me to go. HELLO! No I would rather stay home and spend most of my time in a darkened bedroom without my husband for support or company. Sheesh! I just have this overwhelming desire to get my health back and reclaim my past life.
All the best for all of us!
Cheerio Vicki
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 30mg, 2008 - cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept08 25D - 8
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Bill
Member in Phase 3
| Joined: | Thu Dec 1st, 2005 |
| Location: | Miami, Florida USA |
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Posted: Wed Mar 8th, 2006 17:33 |
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Hi Val here,when Bill was dx with sarcoidosis his family didn't understand what it was, if it was real, or what we should be doing they mostly were intent on both of us getting back to work so that we could take care of our selves. If it were that simple I would have gladly gone back to nursing, but that is an unrealistic expectation. When Bill found the MP site it was like a door opened and fresh air came in, initially my mother in law was sceptical so we had her and dad look up the site and start reading about intracellular bacteria, causes,and treatments. ONLY after my father in law read the information did we get FULL support. If they constantly call you and belittle you, you need to tell them to not call until they are more informed about the MP, my father in law went so far as to get the DVDs,that really helped him [he's a dmd doctor of dental med} he and mom have done a 180 paid off our mort {now we have to buy it back from them but the load it took off of us for now.
HAVE YOUR FAMILY MEMBERS GO TO THE SITE AND START READING AT LEAST ONE OF THEM MIGHT HAVE AN EPIPHANY!
mean while consitrate on those who are supportive you don't need the negative energy- love Val
p.s. if you can afford them get the DVDs and MAKE them watch,it can't hurt and might open they're minds, good luck it is very frustrating but don't give up!Last edited on Wed Mar 8th, 2006 17:39 by Bill
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Diagnosis, Sarcoid May 2005 lymph biopsy/Phase 1 MP,Started Benicar 40mg q6 1/7/06 started mino 75mg. q48 4/11/06 ,diazepam 5mg tid, D tests 11/05/05:1,25D=60 & 25D=19.8, avoiding light & D, NoIRs 12/13/05
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Aussie Barb
Member in Phase 3
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Posted: Mon Mar 20th, 2006 04:03 |
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Diana, All,
We havent taken this on lightly. we dont continue to do it because it is good fun. This is tough and this is serious.... more serious than most others realise.
We are literally in the fight OF our Lives,
and in the fight FOR our Lives.
Can any person, Family Member or Other, show us anything that we are better off doing than MP, anything that is going to bring us a Life... ?
If so, we havent seen it yet. Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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CJ
Member in Phase 3
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| Location: | Byron, Michigan USA |
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Posted: Wed Mar 22nd, 2006 18:17 |
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When It comes down to it, after explaining and seeing my families "deer in the headlights" look. I say, I've done what the doctors wanted me to do, I've always known that there was more to my illness than I was being told. I cannot continue on the path I have been on all these years. I feel I have no other options and no more time to wait & see. I am doing this because it makes sense and I deserve the chance to get well. I just want to get well.
If that failed I'd just make 'em feel guilty as heck
You deserve a chance at wellness.(at the very least)
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Saroidosis/lungs, 25D7 (8/07) Spireva,Ibuprofen, NoIRs, lite exp r/t work
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