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carol
Advocate
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Posted: Sun Aug 20th, 2006 17:22 |
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The free ticket
My husband Phil spoke at the LAX conference about the trials and tribulations of being an MP support spouse.
One of the things he said was that he decided early on that he would always try to “cut me some slack” because he knew how hard the MP would be, physically and emotionally. He calls it the “free ticket”. Sue said she had discussed the free ticket approach with her husband, but they were finding it easier said than done.
I wanted to make sure Sue understood that, as great as my husband is, he’s no saint! Many times the free ticket means Phil gives himself permission to get the heck out of Dodge until the worst is over.
Another thing that keeps Phil motivated is he loves the idea of being part of history in the making…the creation of a new paradigm in the treatment of Th1 disease. I say it’s a lot easier to be excited when you’re not the one herxing.
For my part, I try to remember to tell Phil how much I appreciate his support.
I thought you might be interested in how I think the "free ticket" concept works for us in reality.
Let's say I am having a particularly bad day, herxing terribly which makes me either bitchy or weepy. I get a kiss on the forehead and a pat on the back (the symbolic bestowing of the "free ticket"). Then Phil will either (a) leave and go play golf (b) watch some kind of sporting event on television or (c) work through a few more pages in his sudoku masters puzzle book. Once he immerses himself in one of these activities, he is totally removed from the reality of my situation. He just mentally (and sometimes physically) goes somewhere else. He takes a break from all this. When he comes back (physically or mentally) we just start fresh.
Having a sick spouse (or being a sick spouse) is a tremendous challenge to a relationship. All we can do is our best.
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19252 |
| Status: |
Online
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Posted: Fri Oct 13th, 2006 16:41 |
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Personal and FAMILY TOPICS
(filelink)
Words of advice and encouragement from seasoned members
MP-Lifestyles.org
This new site is for general discussion about Lifestyles and science-related issues that are not appropriate at this study-site. MP members can post there (use your same username and password as here), and the public can view and search the discussion forums.
Topic: MP for Singletons Ideas for MPers who live alone
Does It Makes Sense to Use MP for High-Function Patients
Just diagnosed due to minor breathing issues. Wondering if MP is appropriate.
Finding social support
How do I know if I can do this?
Should couples do the MP at the same time?
Letter to Family can be edited to suit the individual situation.
Leesa wants to share progress in a Family situation
Family adjustments to MP
Chris: Your children are more at risk from associating with you and your sarcoid than they are from a few days in the dark.
: Living Life on the MP &
Ideas For Summer Holidays
Catlady: "If you start now, you will have a degree .....
Invasion of the Body Snatchers
LisaN's view of the bacteria and some of our medical system
MP ALL in ONE Introduction to Links & Information has personal experience
Judithann filelink: requests the support of her Dr.
How do I talk to everyday people about the mp.without them thinking I'm crazy
Genetic defects and Th1 inflammation Topic
Does a defective gene cause Th1 inflammatory diseases? FAQ
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MARSHALL PROTOCOL SUCCESS STORIES Members Testimonies of their improving health
LINKS to Member progress and improving Health
is the Resource of individual links to Members recovery experiences
Dr Marshall: "The MP is unique. It is the ONLY treatment which allows you to control the immunopathological response so you can reliably induce recovery from Th1 disease. Nothing else can do that." ....
** New DVD pack for Physicians, Friends and Family **
has Two 'Science' disks and two 'Recovery' disks
Immunopathology
Checklist when Starting MP
as per the Tools to check: says in part:
Am I tired. do I need to rest or sleep.
Have I reassessed Family and Social obligations and expectations.
Do I understand and accept my own limitations.
Have I addressed any needed changes.
Have I been clear with others on what I can or cannot do.
Have I clearly asked for support and assistance where I need to, each time I need to.
Avoid making commitments that are not necessary for your recovery.
<< if having problems please check if you need to make adjustments in any area, and feel free to ask on the Board. thank you.
If you are concerned do not hesitate to contact your Dr.
ABC of MP has the Essential Information under alphabetised headings.
How to post for other people
How do I know if I have the 'right stuff' to be successful with the Marshall Protocol?
How will the Marshall Protocol affect my life? Can I continue to work? and play etc.
How does stress affect Th1 inflammation?
Can children be treated with the Marshall Protocol?
Pregnancy and the Marshall Protocol
Should I wear NoIRs, avoid natural light exposure and eliminate vitamin D before starting Benicar?
Can I go out in the sun again after remission? How will I know when I've recovered?
How long does the Marshall Protocol take?
Some of my family members appear to have Th1 inflammatory symptoms.
What should they do?
How does Th1 inflammation develop? What is successive infection?
Will re-infection occur if my partner or family members are not treated?
Can reinfection occur once we are healed?
Please check all precautions / instructions in the Phase One Guideline with your Dr. Some have it printed to check with regularly. It is very important that you and your Dr know to follow the essential aspects and guidelines as written for safety and efficacy of treatment..
1. When your Doctor orders Benicar, we recommend asking s/he to Rx Minocycline at the same time, to have in hand for use when required.
Keep a good supply of your meds with you at all times in case of unexpected delays.
How can I control my anxiety and depression?
Helpful hints from members
The therapeutic effect of pets
Visualization techniques
Make sure of adequate pain control, rest, relaxation, and hydration, nourishment etc.. Tools to check:
Rest is a very important part of managing and healing.. By being pushed to the limit of the tolerable immune response our body is working to capacity.
Cut all stress as much as possible
If symptoms approach intolerable, assess your natural light exposure, assess your symptoms and use your personal tool kit to be sure symptoms are not due to other factors besides immunopathology (natural light exposure, lack of rest, exercise, diet, etc) that can be modified to reduce symptoms asap.
Last edited on Sat Jun 14th, 2008 14:01 by Aussie Barb
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19252 |
| Status: |
Online
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Posted: Sun Oct 29th, 2006 23:11 |
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(filelink)
When a family is antagonistic
Q: My real life is actually looking promising but overcoming the "hate mail" I keep getting from my siblings is very difficult. I hope my situation is unusual, but nevertheless....any hopeful words will go a long way. I am hurting and crying a lot.... Any suggestions would be helpful.
JRFoutin reply:
Take heart. Family may be infected too, and much of the rage they feel is merely the ugly step-sister to the despair you feel. Close the letters and neatly file them in a "to be opened when we are both well" file that you can laugh about together in the future... after family sees you get well and seeks that hope for their life too.
One of the hardest pieces of advice I got from Aussie Barb and other wise souls on the board was to get well first, then work with family. And as you have noticed, the MP takes a longer time than healing from some broken bone or previous antibiotic therapies. I have a long way to go before I can hope my family will accept what I am doing, let alone accept it as a hope for their future. Some may not live so long, so what can I say more there? It is painful for me to watch them suffer needlessly, except for want of a better opinion of me or science.
I've finally come to the point that above all, their agency and choice is theirs. I have done what I can in a short period of time and the evidence for my improvement will emerge over time. Stressing doesn't help me get well and I must captain my own ship over rocky seas for a tad longer.
Keep doing the MP. Post on your thread. Work with your doctor.
I want to live.
I want to get well with meaningful quality of life.
The MP is the only way to get there.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Meg Mangin R.N.
Research Team
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Posted: Mon Dec 11th, 2006 01:53 |
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From the "Reaching out – letting friends and family know about the MP" panel Sunday, June 18, 2006 at the LAX Conference
(filelink)
Leader—Belinda, Panel members: Janet Foutin, "Le Anne", "Phil Schoner", "Leesa", "DNStog"
Donna's (DNStog) presentation
The first people I told
A. My husband and family Ophthalmologist, who is also a family friend. They knew of blindness threat from Uveitis and potential death from Sarcoidosis. Both supported my efforts…OD offered to prescribe MP drugs, but was not equipped to do any blood work that was recommended at the time by MP staff. Husband’s experimental chemo treatment for Stage III cancer worked, so he was open to the MP…just wanted to know credentials of doctor prescribing it.
B. Daughter and sister were the next to be told, because I knew I would periodically need their help. Daughter had to help cover the windows and skylights of our new kitchen and garden room. My sister had to pick up the slack for emergencies with our parents AND to tell the hospital and my husband to resuscitate me in case of an emergency (cardiac herx).
My sister is my backup emergency contact; however, she has beenmore interested in the MP and how it works than my husband. I amthe coordinator of doctor appointments, lab tests, etc. for my husband who goes to work at 6:00a.m. and returns home around 8:00 p.m. (He is a hands on chief operating officer of a 7,000 member work force.)
Long story short, he hasn't had time to ponder his own health, much less mine. He's physically supportive, but leaves all medical decisions up to me. I was his caregiver during Chemo, radiation and recuperation 24/7 for well over a year AND took care of his semi-invalid, demented 92 year old mother simultaneously. (There are times (I think) that he believes I can find out how to make every one better via the internet.)
C. Elderly parents were told next because I would not be able to see them as often.
D. Close friends who I occasionally lunched with were told and eventually extended family…cousins, aunts and uncles. All have been quite supportive and a few were interested in how the treatment works…these were all cousins who are a few years younger than me and also suffer from chronic inflammatory diseases.
E. When ARF put out a call to write the NIH to support the appointment of Dr. Marshall, about 30 of my email buddies around the U.S. were sent lengthy letters regarding my medical condition requesting their help. Many wrote letters.
Educating my family
My family has not required an extensive explanations of the protocol, just the basics. Of course, the hardest detail for them to comprehend was the need to avoid all sunlight and sources of vitamin D. Just knowing that the MP is curing me is all the proof they’ve needed that this medical regime works.
Support for lifestyle changes
The hardest lifestyle changes my husband has had to tolerate were the alarms ringing for Benicar dosing (12 Midnight would wake him) and the blocking of sun in our new home addition.
After eight months on the MP, my daughter moved back home to commute to school each Wednesday to complete her master’s degree. What a blessing she continues to be in my life. She drives me everywhere I need to go, grocery shops, runs errands, cleans the house and cars, and walks the dogs. Even her boyfriend helps by occasionally cooking for the whole family. (They were with my husband and me on a trip to SFO and witnessed an almost crippling sun flare that I experienced.) Prior to her coming home, there were times I had to leave the house during daylight hours. On two occasions, I had sun flares…rage and overheated the first time…overheated and loss of strength and energy the second time.
Studying the MP
During Phase I and part way through Phase II, I read every post each night whether I added my own comments or not. This helped me immensely to understand if I was experiencing the "right" herx symptoms or not. One of the patients before me, I will not forget. He refused to stay out of the sun, be properly covered, or wear Noirs and experienced horrible sun flares, cardiac herx symptoms and rage. His herx symptoms really scared me and made me a bit hesitant to start the treatment, however, further reading of other MP patient posts softened my fears.
Study site support
Doing this along with trusting Meg Mangin’s reassuring "online" manner, reassured me to forge ahead. Every question or concern I ever had has been answered by Aussie Barb, the "MP Angel of Mercy", or one of the other staff members in a timely manner.
Until I started Minocycline, I did not post, just read, printed off pertinent material and kept the information in a RED plastic folder for quick referrals. I also practiced getting around the MP site, learning how to post, update my profile, and send private messages. Without the online support of other MP patients and the staff, I do not believe I would have been successful. Four separate alarms were set for Benicar dosing, including one battery powered back-up clock for power outages. Without my particular type of pillbox, I don’t think I would have gotten through Phases I and II. (Show pillbox – seven small plastic boxes separated and labeled Breakfast, Lunch, Supper, and Bedtime all fitting in a plastic tray…perfect for the MP.) Every Sunday night, I take my basket of medicines; drop each rx in their appropriate slot for each time frame, for each day, for the whole week.
My improvement encouraged family support
Because of memory problems, my mother sometimes forgets that I have to feel bad in order to feel good. After I remind her, she seems to understand. My dad and I have become even closer since we both have been getting well together. Even my close friends understand what I must go through and see that I am getting better. Just knowing that my Uveitis is 99% resolved has been proof enough for all of them.
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Meg Mangin R.N.
Research Team
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Posted: Mon Dec 11th, 2006 02:02 |
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From the "Reaching out – letting friends and family know about the MP" panel Sunday, June 18, 2006 at the LAX Conference
(filelink)
Leader—Belinda, Panel members: Janet Foutin, "Le Anne", "Phil Schoner", "Leesa", "DNStog"
LeAnne's presentation
Getting your family to understand and support your decision to be on the protocol.
"As far as my husband and children are concerned, they have been supportive and understanding. It was a little embarrassing at first for my children to see me all dressed up in my hat, gloves, and glasses, and going out in public, but now they have gotten used to it. Yes, they get annoyed at times with the lights being dimmed, and windows covered, but that is usually the main complaint. My children, especially my son and my youngest daughter, play police, and help me not to eat or nibble on things that I am not suppose to eat. "They will say things like, "Are you suppose to be eating that?", or "Don’t even think about it" So I am thankful that they keep me in check.
As far as the changes in the home life, I am blessed because my children are older and have their own cars and jobs, so it is not like they are tied down to a darkened home like I am. It has been harder on my husband. He is a very patient man, and I appreciate him being supportive to me and bringing me here today.
In the issue of reaching out, I have had the most difficulty with my family. My mother, brothers and sisters, all have physical problems and some that I know have Th1 illnesses. When I first started the protocol, my family was not supportive. They were very apprehensive and afraid for me and my decision. I understand their concerns, and it has taken several months for them to warm up to the idea.
Now, after a little over a year, I have two family members that are talking about getting on the Marshall Protocol. There are four main points to remember when talking to a skeptical family member. These are areas in which I have made mistakes and areas that I think are helpful.
I. Study- Know what you are talking about.
II. Keep it Simple-
III. Be confident, Not pushy
IV. Don’t get discouraged
"Life is too short to spend your precious time trying to convince, who wants to live in gloom and doom otherwise. Give lifting that person your best shot, but don’t hang around long enouph for his or her bad attitude to pull you down. Instead, surround yourself with optimistic people."
~Zig Zigler
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Belinda
Research Team
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Posted: Mon Jan 1st, 2007 06:37 |
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Family Support:
(filelink)
Many of us were once *sick and tired* of being sick and tired, we denied how sick we were (to ourselves as well as our family) and our loved ones were fed up with *all of it*. After all, they had seen us try one thing after another, and always fail to fully recover.
Struggling with chronic disease can strain the fabric of even the strongest partnerships.
Like anyone else, you want to have your Family supporting you as you battle this disease. Once you have fully educated yourself about the Marshall Protocol, and you have committed to do it, I suggest you explain why it is important for you to seize this opportunity. It will be important to point out that with this treatment:
1) You know going in that a positive reaction be an immunopathology response, which means the treatment is working.
2) The goal during treatment is to keep the immunopathology tolerable. We have found this is the best way to recover and it will also allow you to attempt as much a normal life as possible.
3) Even while experiencing periods of immunopathology, we expect, over time, for MP'ers to slowly begin having phases of feeling better during treatment.
The DVD of our 2006 conference includes a panel session with individuals who experienced the MP as a family member, rather than as the patient. They explain in their own words the range of their reactions as time went on -- from skepticism to devoted partner. I think this particular session will help your husband understand what he may expect and how to weigh the value of this treatment. It is available by request from our DVD order form. ~Belinda
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When I got what ever it was I had, it was bad. And on top of the MP. Then my husband got the flu - the only thing that saved him was the Guafenesin that I was taking. I had read the FAQ. He missed work for the first time in 30 years. Everyone else around us who got it ended up in the hospital. Even though it was bad, I count us blessed. But he then knew what I was going through all the time. It made him think.
When I told him I was going on MP he was not encouraging. When It came to talking about the illness, we didn't. I understand where he was comimg from. It is hard to watch someone go through what I was going through. Each year more and more being taken away. Not being able to help when someone you love is in so much pain and no hope at all. Then He saw this was working. Then He got sick. Now we talk now he is helping now there is hope. He has always been a good man and father. He just started to shut down. I guess like I also did.
Now He helps take care of my meds. after taking mino two times in one day  I am glad he does. He calls me to make sure I take the banicar on time. He now goes to the Dr with me and much more.
If any husbands out there are afraid of getting your hopes up because you have so many times and it has been nothing but let downs. DON"T give up!!!! It helps your spouse to not give up. It will speed up your spouses healing if you help and show you care about what is going on when it comes to the MP. It is alot to control and remember. When fighting brain fog also.
It is good to get your children or a good friend to read and understand what you will be going through also. For me until now it has been a lonely illness. This site is a God sent. I hope all knows how much they are helping and how many life, marriages, ect they are saving. ~DoveIndian
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"he somewhat understands, but his stance on it is that it has an effect on "others" in the house and I get that, I am trying to be sensitive to their feelings but also get well."
What effect is that?
The rest of your family have the whole outdoors available to them if they so desire. You don't. How does this make them the victims? It sounds to me like your husband is in a massive state of denial and would just rather have you "be better" so he didn't have to make any changes. Sure, kids should have a mother who isn't sick, but in this case they don't. It sounds like a typical response of denial, anger, bargaining, depression and acceptance. Your family is bouncing around in the first 3 right now. They'll get used to the new way after a while; you need to stick to your guns.
Frankly, I think your husband needs to grow up and accept his responsibility to you and your kids by getting you well again, no matter what it takes. (I seem to recall something in my marriage vows about sickness and health, better or worse. Or does he just want to skip ahead to the last part of that line? ) If you were to give up the MP, what would be the outcome? A few years of "normalcy" while you decline and eventually crash? Would he tell you to not go onto chemo if you had cancer because it might upset things? Th1 can and does kill people, and it does it in a slow, ugly, painful way. Maybe he just hasn't understood how serious your condition is. Goodness, how inconsiderate of you to be ill.
People, especially kids, will live up to your expectations of them. Here is their chance to step up and help Mom get better. Everybody in the family should have a part to play if they are over the age of 4. Every little bit helps, and then "we" are fighting this disease, not just "you". In the meantime, don't concentrate on the things you can't do, concentrate on the things you can do!
~Knochen
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19252 |
| Status: |
Online
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Posted: Tue Feb 20th, 2007 18:52 |
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(filelink)
How to talk to acquaintances about the MP
A friend of mine came up with and idea on how to explain to people what's happening with me. Because it's taken me nearly three years and 6 docs to find a doc who will do the MP with me, I've been wearing Noir sunglasses and covering up for years! (My recommendation is to go directly to a doc familiar with the MP...) I used to go into detailed explanations, but I usually got eyes that would glaze over at the details.
Most people have some understanding of how diabetes and blood sugar works--blood sugar goes up and down in response to food eaten or not eaten. Our condition is similar, we experience surges in vit. D which make us sick, in response to what we've eaten or how much light/sun we've been exposed to.
This usually brings nods as people get it. If they're still 'with' me, I then explain that my illness is caused by bacteria that are so tiny they're smaller than viruses. They make and use the vit. D to survive--it even makes it easier for them to replicate. There's so many of these bacteria in my body that when the antibiotics kick in the chemicals the dying bacteria give off make me sick too. In fact, if I killed them all at once, these toxins could kill ME. So, I have to take a couple of years to kill them at a rate that doesn't destroy me.
And, if they ask, I just explain that this is a very exciting development in the treatment of my illness because it WORKS. In fact it's so new that not all the docs understand it yet, and that I can't wait to get well so I can live a normal life! ~Jillian from North Dakota
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Personally, I don't try and explain everything to everyone who asks about my health. I formulated a general response and just don't go into details except for a few family members. It seems others don't quite grasp the situation and maybe you are interpreting their confusion as lack of caring. And that is probably not the case at all! So, give a short answer; maybe tell them the treatment side is still being explored at this time. Then you can relate more once you are implementing the treatment program you want. ~Betsy G.Last edited on Fri Jul 27th, 2007 19:33 by Meg Mangin R.N.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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