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caroldeleah
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| Joined: | Tue Jan 15th, 2008 |
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Posted: Sun Jan 25th, 2009 05:10 |
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May we all have courage like the young man in this video clip--a courage that will keep on to the end.
http://www.maniacworld.com/are-you-going-to-finish-strong.html
I'm planning that Monday will be the first day of my MP journey and that I will finish strong. What a great place to get the support we all need on the road to recovery together.
Deleah's mom, Carol
Last edited on Sun Jan 25th, 2009 06:40 by caroldeleah
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Uveitis|HashimotosHypothyroidism|Thyroid Nodule|Arthralgias|RefractiveMyopia|1,25D34| Ph1Aug08|Ph2Nov08|Ph3Jun09|25D 6(02/09)|25D 9(12/08)|Combigan/Cytomel/RefreshPlusSgl/NoIRs
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Joyful
Foundation Staff
| Joined: | Sat Jun 9th, 2007 |
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Posted: Sun Jan 25th, 2009 06:09 |
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Wow Carol, that video was incredible!!!
Thanks for sharing.
We all do need each other.
When you finish strong... I believe I will be right there with you!!!
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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Deb Grabetz
Moderator
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Posted: Sun Jan 25th, 2009 09:29 |
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Carol...This video goes without words,eh?
Many times, I believe this is how I got through the last two years...remembering that there were many who were much worse off than I...It may not even have been with an illness--maybe it was financial, maybe it was from a loss or loneliness...but I was always reminded to be humble in my suffering! Thank you for sharing this...we can never know where we might be or who we may become, if we give up! There is something to be said about "picking one's self up" and trying again!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Karna
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Posted: Sat Jan 31st, 2009 20:54 |
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| Thanks for sharing the video. I know that I have been feeling a little discouraged lately as I continue to travel through life on the MP. I just started month nine and I'm feeling weary. I will continue to hope and perservere, though, because of the many stories of recovery. I always say "when" I get better not "if" I get better when talking to people about my journey to recover my health. I agree with Deb about there being so many who struggle with things even more difficult whether it be health or otherwise. I can only hope that someday I may be able to help someone avoid a lifetime of illness because of the experience I've gained while on the MP.
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CFS/Food allergies,sensitivities Ph1May08 Ph2Oct08 25D8(Apr09) low lux home, limited outings covered up, enzymes
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Sunbeam
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| Joined: | Thu Dec 14th, 2006 |
| Location: | Perth, Australia |
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Posted: Sun Feb 1st, 2009 01:24 |
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Hi Carol,
I have shared this video with a few people, all of whom found it inspiring.
What courage and hopefulness. I have never been that strong, but I am learning that no matter whatever a persons condition there is still a wonderful life to lead.
It will be different, not what one hoped for or planned for but it could be even better than the plan would have been.
Thanks for sharing,
Take care, Lynn.
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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D 6 2/08
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Deb Grabetz
Moderator
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Posted: Wed Apr 22nd, 2009 12:52 |
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I wanted to share this posting with all, which I received from another Sarc site. This site has so many sick people on it and yet when I approached the moderators there about opening up disussion on the MP, they refused me. Are they afraid they will lose "followers"? I'm sure of it when I read through the hundreds of people who are, not only NOT getting any better, but who are losing their battle with their sarc. This is just a random post that I picked out to use, and of course I will not post anyones name for their privacy.
This particular post though shows the continual deterioration and although being treated, this is so representative of that "cry for help" when other methods of treatment are only giving temporary relief and causing further complications. My hope is that we will see the time when the medical community has a wake up call regarding these standard treatments and recognizes that these choices to use steroids and alternative treatments are destroying peoples lives.
We are in a "feel good" society! We want to take a magic pill that is going to make this all go away and by tomorrow!...but the reality is it comes back and with a vengeance. Note that this person posts "it is now under control" yet goes on to post that here has been further damage to the heart. I guess I must be having some heavy neuro IP this morning but this is the stuff that really gets me angry!!! If I were a doctor, how could I possibly feel good about watching my patients deteriorate this way and not want some different outcome for them?!
It is reading posts like this one below, that keeps me grounded on the MP. ...the Courage to Keep On!
Hi there, it is now six years since I have learned that I have a severe form of Cardiac Sarcoidosis, it is now under control after heavy and long steroids therapy. Unfortunately last summer the desease came back and further damaged my heart. Now, after another period of heavy dosage steroids therapy, a resynchronization defibrillator and pace- maker has been implanted in my chest. This device replaced the three i Pace-maker/defibr. I had before.This has happened six week ago but I'm starting to worry as I don't see any improvements yet, nor the echocardiogram shows any difference.
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Karna
Member
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Posted: Wed Apr 22nd, 2009 20:39 |
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| It is mind boggling to me the lack of response people give when introduced to the MP and the chance for recovery. How could you not want to learn more about it and give it a try? This is life and death we're talking about here. I could just feel my low blood pressure rise as I read your post, Deb! My husband and I are constantly running into a lot of "sick" people out there who present with symptoms that could be helped by the MP. I even have a friend with MS and another with Lupus that I've shared the MP with. My entire family is sick and none of them want to admit they have what I do. It is so obvious to me that all these people could be helped with the MP but all we get is a blank stare when we try to pass along this chance to feel better and live a life free from illness. I am also wondering why the MP is not front and center in the news and on all the talk shows. How could something so life saving not be getting more attention? My dream after I recover is to travel and talk to anybody who will listen how they can get their life back with the MP. I so agree that we live in a "magic pill" society and it makes me irritated that people don't want to be responsible for their own health! Grrrrrrr! If I could get just one person to listen and save them from years of ill health, I will have fulfilled my purpose this amazing journey has brought about.
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CFS/Food allergies,sensitivities Ph1May08 Ph2Oct08 25D8(Apr09) low lux home, limited outings covered up, enzymes
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
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Posted: Wed Apr 22nd, 2009 20:47 |
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Deb on another thread you provided the quotation, "Fall down seven times, get up eight."
I am losing my second MP doctor (closing practice) since starting the MP in Dec 2006. THAT is discouraging.
I find that other folk on the MP help provide me with the strength to go on. (That and not having any other choices.)
Karna, I think so many of us have the same experience as you and hope some day someone does listen. In the meantime, we focus on getting well. I can only hope that when I am well that my recovery will not be dismissed. (Already I have symptoms that have been given labels that many in the medical community want to disregard as psychological when even much that is psychological might very well be Th1 disease.)
Please remember (everyone of us) don't ever forget that there is someone traveling the MP road who will be willing to help restore your courage to go on.
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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JanEE
Member
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Posted: Thu Apr 23rd, 2009 06:03 |
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I've been through all the above feelings also. Somewhere a long time ago, I thought I read something that Dr. Marshall said---that there will always be people who won't be able to handle doing the protocol, and I'm sorry to say that that includes pretty much all my relatives and friends, whose diseases include an array such as Alzheimer's, Crohn's disease, Reiter's Syndrome, rheumatoid arthritis, osteoporosis, lupus, cancer, diabetes, anorexia, macular degeneration and IBS, as well as a myriad of lesser conditions . There hasn't been one person that seems remotely interested---not even a cousin used to be in nursing. She just couldn't bring herself to read about it, and she has lots of problems.
I think most of these people just can't wrap their heads around the idea of several years of uncomfortable therapy, or the dark days with eye sensitivity. What they don't stop to think of is that they probably wouldn't feel any worse for those 3-5+ years than if the darn diseases just continue on their merry way.
Maybe that's why they seldom ask how I'm doing---because they might feeI guilty at not having what it takes to attempt to get well. Now, doing the protocol, I can at least feel like I'm accomplishing something with whatever pain and disruption I'm going through. I'd hate to go through the stuff I went through before beginning the protocol, with nothing to look forward to but continued failing health and the ravages of old age. Trevor has also said that we should put our efforts into getting ourselves well, and I think I'm getting better at doing just that. I certainly wouldn't hesitate to give information if I'm asked though. After all, they asked!
Trevor has also said that it may take another generation of doctor's with more open minds before the protocol is accepted as THE thing to do. It just could be that it may also just take another generation of patients to accept the treatment as the way to go---just as there are a few forward thinking people on here now who aren't symptomatic yet, but doing the protocol as a preventive measure. Good for them.
I'm so glad we've all got each other, and I don't want to think what life might be like without Trevor and his protocol. Best to you all.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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caroldeleah
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Posted: Thu Apr 23rd, 2009 06:26 |
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JanEE,
Ditto, to all of the above.  Carol
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Uveitis|HashimotosHypothyroidism|Thyroid Nodule|Arthralgias|RefractiveMyopia|1,25D34| Ph1Aug08|Ph2Nov08|Ph3Jun09|25D 6(02/09)|25D 9(12/08)|Combigan/Cytomel/RefreshPlusSgl/NoIRs
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expate
Member
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Posted: Sat May 2nd, 2009 17:16 |
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Interesting to read above posts. Today is day 300 for me on the MP!
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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kenc
Member
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Posted: Sat May 2nd, 2009 21:30 |
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Great video!
Now every time I'm feeling down, which has been quite often during the last two years or so, I'll play this video. Thanks for bringing it to this site.
KenLast edited on Sat May 2nd, 2009 21:31 by kenc
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Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4 6Sep05 1,25D=29 25D=12, 12Jul05 Beni+pred, 27Sep05 Mino, 12Jul06 Phase2+dexa ,12Jul07 1,25=16.7 25D<10, 14Aug07 Phase2
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kenc
Member
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Posted: Sat May 2nd, 2009 21:59 |
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Karna,
How could you not want to learn more about it and give it a try?
I see this lack of interest also, even among those who normally respect my judgement. This isn't surprising to me. First, the MP has to compete with all the other alternative treatments out there. Chances are many people with autoimmune diseases have already tried other treatments and failed to get better. We know that those treatments have little merit, but that's only from our point of view. Someone without our knowlege and experience has no idea. The safest approach for them is to rely on the experts. Unfortunately these experts are a product of history and vested interests. They can't see beyond their own assumptions and have to appear to have the answers but are not well equipped to provide them. Then there is the MP itself - a treatment that takes several years and will make you worse before it makes you better. Why even spend the time to learn about this? To those who don't understand the MP, this sounds like the worst alternative treatment imaginable. If you didn't know any better, would you try it?
Everytime I come back from the hospital from kidney failure, low hemoglobin or some other problem, the first thing people ask me is, "Are you going to continue on your experimental treatment?" Then I say, "Yes of course" and they wonder whether I need treatment for my disease or treatment in a mental hospital. This would not be very encouraging for those who are unfamiliar with the MP. So the other reason people with autoimmune disease may not be interested in trying it is that they personally do not know anyone with their particular disease who appears to them to be totally cured by the MP. The best way you can convince them is to get totally cured yourself. They may become interested after they've seen you doing break-dancing, climbing Himalayan mountains and skydiving. OK, just symptom-free will be good enough. When this happens, please get your success story on Bacteriality.com. and in a success story here and on the main MP site. Show your sick friends and relatives just how well you've become. Shout it to the World!
Ken
Last edited on Sat May 2nd, 2009 22:03 by kenc
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Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4 6Sep05 1,25D=29 25D=12, 12Jul05 Beni+pred, 27Sep05 Mino, 12Jul06 Phase2+dexa ,12Jul07 1,25=16.7 25D<10, 14Aug07 Phase2
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expate
Member
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Posted: Sun May 3rd, 2009 00:29 |
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I do my bit to try to spread the word. Not everybody wants to hear - fine. For those who are interested, there are varying levels of interest. I don't think (OK, I know I haven't) I've moved anyone to try the MP, but I have kept several people from supplementing with vitamin D. Even today!
Odette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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Karna
Member
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Posted: Sun May 3rd, 2009 00:37 |
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| kenc, I plan to do just that! I've already told my family(who all need to be on the MP) that WHEN(not IF) I get better, they can all just lay around on the couch complaining of their latest set of symptoms while I'm out enjoying life!(My mom even begged me not to do the MP and her symptoms are the most similar to mine) I was a very active, confident, happy go lucky person once and I'm already making a mental list of all the things I want to do when I get better(including climbing a mountain!). I can't wait! I have a friend with MS and another with Lupus. I have told them both that I'm doing this for them as well as me. I'm hoping that seeing a change for the better in my health will make them atleast want to read about what the MP can do for them. Sometimes it hits me that what we're doing is revolutionary. We are paving the way for thousands of sick people to recover their health(as others have done for me) by our willingness to participate in the MP. Kudos to us!
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CFS/Food allergies,sensitivities Ph1May08 Ph2Oct08 25D8(Apr09) low lux home, limited outings covered up, enzymes
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kenc
Member
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Posted: Sun May 3rd, 2009 00:46 |
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| I think the best advocates for the MP will be those MP patients who had a well known disease diagnosis before starting protocol, experienced a worsening of symptoms during the protocol and then fully recovered and are now asymptomatic. We could use and army of such patients, not just to spread the word among those who are sick but to give hope to those of us who are now struggling with symptoms while on the MP.
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Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4 6Sep05 1,25D=29 25D=12, 12Jul05 Beni+pred, 27Sep05 Mino, 12Jul06 Phase2+dexa ,12Jul07 1,25=16.7 25D<10, 14Aug07 Phase2
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Deb Grabetz
Moderator
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Posted: Sun May 3rd, 2009 11:20 |
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Ken,
I think for many who hear of the MP, yet "don't get it", part of it has to do with the level of illness they are experiencing. When one gets desperate enough to get well, this sense of urgency rises greatly!
As many do, I dealt with many symptoms through the years, went without a real diagnosis and so on. When my body finally stopped giving back to me what I needed, that's when I found the MP and set my mind to it. At this point, not even knowing the MP existed, I just knew the steroids were going to end up killing me and at 50 years old, I wasn't quite ready to be a sarc/steroid statistic.
I truly admire those who are on the MP, who are in early disease stage yet are committed to their health and getting well, before they hit rock bottom. Yet, I know that it took me getting seriously ill to start the protocol.
With each improved patient, the chances of more and more people learning of the MP becomes greater!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Linda J
Member
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Posted: Tue May 5th, 2009 16:51 |
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I am just afraid that when I am finally well, people who did not see what I had to go through will assume that I was just wrong about what I was diagnosed with, and that I could not truly have been as ill as I say. Even doctors will be skeptical that I was ever sick, simply because my medical records have a string of different diagnosis, and too many of those are considered psychosomatic ones, like PTSD or IBS.
And even of the people who DID see what I went through (there were very few people who stuck around to see me go through what I have) some of those will assume that I just got sick of playing the being sick role, and decided to drop the “act.” My husband’s sisters and mother come to mind. They never really liked me, and I have no doubts that in their mind, even my recovery will be proof to them of what a bad person they imagine me to be.
After my first few attempts at trying to get help from doctors, I realized that I could not list ALL my symptoms, or the full extent of their severity, and have them actually believe me. The list was so long that they couldn’t believe that someone could have that many things going on. So they would tend to hyper-focus on the first few symptoms that I listed. And they were constantly downplaying my suffering, as though they thought I was catastrophizing it for sympathy or something. They often tuned me out after the first 90 seconds of the appointment. So I learned to get the worst in, in that first 90 seconds, but downplay it to a level that they would take seriously. And that meant that I only got symptomatic treatment, and that they often were ignorant of the full extent of how ill I was.
So only I will know how much I really had to go through. But rather than assuming that my recovery means nothing, I have looked at this from the perspective that I believe I am a participant in the most important medical research in history. I may end up being a faceless part of that research, but I am still participating in something that I think has the potential to make a bigger change in society than anything else that man has come up with. All the different diseases that will be impacted by this, the changes in people’s psychological behavior, the changes that it will make to the ecology and the economy, are huge. Think of what it will mean when there are no more chronic health problems like cancer, or heart disease, or pervasive developmental disorders, or the vast majority of mental illnesses. Think of what people will be able to do when they are not weighed down by undiagnosed health issues. Think about how productive people will become. And I’m helping to make that change by participating in the MP research. I may not fully see it in my lifetime, but I know that this is a step towards that path, and that it will help my children, and my granddaughter, and maybe future generations should my granddaughter decide to have children.
And whether or not I think anyone else will appreciate what I had to go through or not, I haven’t had much of a life so far. I’ve been hampered by health issues as far back as I can remember. And it’s damaged my full potential. I am looking forwards to being able to tackle some goals that I have dreamed of doing for years that will make it more than worth the suffering that I’ve gone through. And if I can do that for 50 more years, or 100 more years, then I will have lead a good life. And that alone will make it worth having gone through the MP.
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Lyme thyroiditis IBS MVP PTSD MCS 125D63 SAM-e Claritin probiotics psyllium silymarin magnesium 5htp homebound low lux NoIRs 25D8 (Oct08)
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
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Posted: Tue May 5th, 2009 17:13 |
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| Oh my Linda, I think you have written a letter that many of us have lived and are living. Thank you. Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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JanEE
Member
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Posted: Tue May 5th, 2009 20:44 |
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Linda, I second Claire's response. You have said this beautifully.
I had initially thought that by going through this I would be paving the way for members of my family, but as I continue on my journey I realize that none of them are even interested, so I am trying to look at this the same way you do. They aren't unsupportive, but just not interested enough to find out more about it---with the exception of one daughter who usually listens to what I have to say, and even seems to understand the science. I don't feel I have the freedom to talk about it much either, which is not only hurtful, but makes one feel very lonely and isolated.
You have many years left to live life to the fullest and I wish you the best of health and a happy life pursuing your goals.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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