Starting my 9th year on guaifenesin! How far I have come! (Latest post comes first)

 

3-14-2009 -  To all Guaiers who are still hoping, (Posted to GuaiGroup)

Don't let go of your dream to someday move and walk without pain, to someday shop again without collapsing with exhaustion when you get home, to someday enjoy cooking again without your legs and back aching or it taking too long because you can't think. Don't give up on that dream that someday you will sing again without hoarseness or a voice that cuts in and out. Don't give up on that dream that you'll experience a burst of energy instead of utter exhaustion after walking several miles or hiking for an hour. DO let go of the dream that you gave away all your hobby supplies because you will need them again when you get back to your favorite hobbies.

You as a Guaier have a mental image of what you are longing for; a quality of life that you've lost. You want to feel useful and productive again. You want to feel significant because of what you're able to contribute. Well, don't let go of that mental image because with the guaifenesin treatment that mental image will evolve into reality. Many others and I are living proof that this will happen.

I've been trying, since last fall, to sit down and write a post to GuaiGroup encouraging anyone wanting to give up or questioning the value of the guai treatment to hang in there and not give up. However, because I'm doing so well again and because of financial reasons, I've been working 40+ hours a week and have had difficulty finding time to post. During the holidays when I thought I'd get a chance to post, I was busy catching up on everything. Then I was going to write something right after the holidays, but came down with a stomach flu virus the first part of January. When I fainted during the night on my way back from the bathroom, I should have known I was in for a rough time. After two bouts of bronchitis that progressed into bronchial pneumonia and then a nasty cold virus, I'm better and am still amazed that I can bounce back from serious viruses unlike before guaifenesin.

If you've read my posts in the archives, you know how far I've come. I was very debilitated with FM for 20+ years. My first four years on the treatment were hard. I'm a low-doser and only this past year have I been able to tolerate going up to 1200mg a day. My reason for writing this post is that I hope to encourage you (if only one person) to keep hoping! Don't stop the treatment. If you're doubting that it's doing anything, hang in there. You WILL see results, maybe just not as fast as you'd like.

You dream of a time that fibromyalgia will just be gone from your life! Until that happens, keep coming to GuaiGroup for encouragement! This list was my lifeline for several years. Trust Claudia and the admin team--they know what they're talking about and they have your best interest at heart. Guaifenesin makes dreams come true. Your dream that you are healthy,
physically and emotionally, will come true! Your dream that you're a productive useful person again will become a reality! Don't give up! Don't let go of your dreams!

9-22-2008 - Connie, You are on the right path! Hang in there!  Actually, it didn't take me eight years to get to a point of feeling much improved. It's difficult to answer your question of, "...do you think it will take me years like yourself to get significantly better ?" because I don't know how debilitated you were when you started in July. Remember, I was VERY debilitated; a prisoner in my home because of my Multiple Chemical Sensitivity Syndrome. I had been diagnosed with Chronic Fatigue Immune Deficiency Syndrome and was either sitting or laying down most of my waking hours. When I was able to sit, I just stared into space because the wheel in my my brain were working as slow as the rest of my body. I ran errands because they needed to be done, knowing I would be in bed for the next few days recuperating. 

 
It took me a year to begin to really notice small improvements. And after two years I was seeing quite a bit of improvement. My daughter, Cherylyn, was working when she started the treatment. She continued to work, although some days were very difficult. But she saw more improvement than I had had within a year, and after two years on the treatment, she was pretty much herself again. She of course, hadn't gotten to the place I had physically, so her reversal was quicker and less difficult.
 
Connie, one month on the treatment puts you at a place that's very difficult! All your FM symptoms have exacerbated and you're wondering how long this will go on or even if it's really going to work. This is normal. We Guaiers have all been right where you are and somehow found the courage and energy to continue the treatment. And I must say, I'm so glad I did!
 
My improved functionality was very apparent after 3 years on the treatment. (Remember, I'm reversing from a very debilitated stage.) I became a little more functional every month after that. Today I'm working over 40 hours a week at two different jobs and do quite a bit of other things on the side. I'm busy and life can get very stressful, but I'm doing great! 8 years ago when I started on the treatment, never in a million years did I think I would be where I am today. I actually disciplined my mind not to 'dream' about the impossible and face reality!  
 
Don't give up, Connie. Take it one day at a time. Accept that it takes 6 months - one year for the average person to feel much improved. You may be an average person! And if you aren't, then I'm a testament that if you hang in there, you too will feel much improved!!!

Here's a quote from my book that probably answers your question the best and is the encouragement I would give you:

 

In the beginning of the guai treatment, it may be hard for the fibromyalgic to believe the difficulty they’re experiencing is making them into a better person. When our symptoms intensify and generate negative feelings such as hopelessness, depression, guilt, regret, anger, self-pity, etc., we literally feel as though we’re degenerating even further. However we need to remind ourselves that these responses are normal with any chronic disease. In time, if we will look at our submission to the guaifenesin protocol as a form of resistance training and a very strenuous, difficult workout, it will make champions of us all.

 

Since beginning the manuscript for this book, I’ve seen even more improvement in my energy level, digestion problem and brain fog. I don’t expect to clear each problem area completely before going to the next. The guaifenesin reversal process doesn’t work that way. My reversal, so far, hasn’t been a complete reversal of every problem I have had at all levels of the disease.

 

What I’m experiencing is more of a gradual improvement in each area that fibromyalgia has affected: physical, mental and emotional, some greater than others. Once in a while, I can still feel beat up during a tough purge. However there’s too much success and triumph for the feeling to last. I will never again feel like I did six years ago when I had given up hope, believed I had lost the battle with fibromyalgia, and wanted God to take me home. My progress makes all the pain and anguish involved in my surrenders seem like a small price to pay for the gift I’ve received: the resurrection of my normal life.

 

I have now found hope with the guaifenesin protocol. If you’ve read this book, you probably have fibromyalgia, and you have either started the protocol yourself or are considering it. If you’ve started and are finding it difficult, keep going! Let your fervor for a life that you once enjoyed inspire and motivate you. Let your eagerness to discover who you might have become without struggling with fibromyalgia since very young, arouse in you the determination to give the guaifenesin treatment a chance.

 

If you’re considering this treatment for your fibromyalgia, I would have to say, “Do not wait another day to get started on it.” You now have two roads you can take: the traditional road of exercise and prescription drugs for FM or the guaifenesin road. You have two choices: try the guai with the hope that all I have said in this book is true, or stick with what you’re doing now for your FM, hoping that Dr. St. Amand isn’t right when he says that it will only worsen with time.

 

If you’ve chosen to stick with the protocol or you’ve chosen to give it a first time try, it will be a decision you will never regret. “Life is about managing risks,” my husband used to say when coaching our children as they entered adulthood. “It’s about which risks are worth taking and which ones will have little value and should be avoided.” The guaifenesin treatment has great value and is a risk well worth taking.

 

All of the unpleasantness and discomfort you fear will seem inconsequential compared to the hope you’ll experience when you see your quality of life improve because of the risk you’ve taken! Even though the journey may be painful, frustrating and confusing at times, the reward will be worth all the difficulty on the journey.

 

After five plus years of watching me on my guai journey, my husband describes it the way he sees it:

 

The guaifenesin journey is one with no rest stops, only refueling stops. Mileage to destination is indeterminate. There is no minimum or maximum speed limit. No shoulder to pull off on. Signage is constantly being revised. A journey that has delays because of “construction” in certain areas. And no one knows how much sludge is in your engine or how much cleaning solution it’s going to take to clean it out.

 

However when we do finally reach our destination, the reward is a life of fewer and fewer limitations that had become all too familiar to us. It will be a life full of energy again, with a brain that can think and remember again. You will have a digestive and hormonal system that works like it’s supposed to work. I could go on, but just know that, best of all, you will have the energy to live normally like your family and friends, a life that has eluded you for years.

 

Six years ago, I could not have even thought about writing a book. Today, not only am I accomplishing that feat, but I’m also able to get up in the morning without longingly thinking about how wonderful it would feel to crawl back into bed. Nor am I glancing at the clock throughout the day, counting the hours left before I can get back in bed without feeling guilty. Those fibrofatigued and energyless days are long gone.

 

Now there aren’t enough hours in the day to do all I want to get done. My severe headaches are a thing of the past as is most of my severe depression. I no longer have inner trembling, draining exhaustion and muscle weakness. I’ll stop with those improvements because it would take another whole chapter to list all of the improvements that add up to much improved health.

 

During the months of writing this book, I went through some difficult purges with much pain, fatigue and some severe brain fog. I had to put my writing aside for a few days, sometimes weeks, until I was better and could proceed again. Pre-guai, I didn’t have that choice: to wait, get better and then continue with a productive activity; it was bad every day without getting better.

 

My life is slowly returning to what I recognize as normal. It humbles me that God heard my cry for help and led me to the library that had What Your Doctor May Not Tell You about Fibromyalgia. I will forever be grateful to Dr. St. Amand and Claudia Marek for all their hard work in spreading the word about the guaifenesin treatment, disregarding all the controversy and criticism. I can now enjoy life, family and friends again. So I say with heartfelt sincerity, “Thank you, Dr. St. Amand and Claudia for giving me back my health so that I no longer just exist but enjoy all of life, once again.”

 

Posted to the GuaiGroup 9-5-2008 - The woman in the Lyrica advertisement says, "Now I have less pain."

 

If I were asked to do a commercial for the guaifenesin treatment, it would be one of those very long commercials. You see, it would take awhile to tell you all the FM symptoms/problems that are GONE now with guaifenesin!

 

It would go like this: "Now I’m able to get up in the morning without longingly thinking about how wonderful it would feel to crawl back into bed. Now I'm not glancing at the clock throughout the day, counting the hours left before I can get back in bed without feeling guilty. Now those fibrofatigued and energyless days are long gone. Now there aren’t enough hours in the day to do all I want to get done. Now my severe headaches are a thing of the past as is my severe depression. Now I no longer have inner trembling, draining exhaustion and muscle weakness. Sinus infections have now disappeared along with my right knee buckling on me, pain in my liver, sensations of water dribbling down my leg. Severe reactions to chemicals in processed food or from produce sprayed with chemicals have improved enough that I can now enjoy a decent diet again. When once I was so debilitated I was basically a prisoner in my home, I'm now working 40+ hours a week, walking 2 miles 3-5 times a week and enjoying life like I haven't in 23 years!" (By now they would have cut me off...with all those NOWS!)

 

This is my 8th year on the guai protocol! Each year on guai I remember less and less of how I felt 8 years ago. Every guai birthday, I read through my journal to recall how badly I felt at one time. It's a time of celebration for my family and me; I got my life back!

 

I still tear up when I read in my journal and remember how I felt: "I visualize myself as a child throwing a temper tantrum. I throw myself down on the floor, kick my feet and pound the floor with my fists screaming, “I don’t want this. I hate this life. Give me back my old life!” Then I plead, “I just want to be happy again” quietly sobbing because I've run out of energy to even continue my tantrum."

 

What a stark difference today! I could write pages about all the improvements that have added up to having 'quality of life' again. However, more than going on about that I want to encourage you to either try the guaifenesin treatment or stay with it no matter how difficult it may have become. If it's been difficult with no visible improvement, do what I did. I decided to give it 3 months--then I experienced about three minutes of energy again. Those three minutes were exhilarating and it was enough to decide to stay with it 6 more months. At 6 months I had even more energy and was seeing some improvement in my FM symptoms. I committed to a year. After 12 months on guai, I saw enough improvement to commit to the treatment no matter what I had to endure--I've never turned back. Since then my two daughters have also joined me on our journey back to good health. Cherylyn, who was 21 when she started, has reversed significantly in her 31/2 years on the treatment. Shelly, who is 34 and started it 6 months ago, is convinced it's the answer to her FM after seeing what it has done for us. She's still in the more difficult stages of the protocol.

 

This silent disease doesn't pick and choose who it will invade. We are all different in our backgrounds, our training, our personalities, our dreams; but we have one thing in common: we're either FM overcomers or we are overcome with it. We are either a victim of the disease or a victor. Dr. St. Amand has now given us a choice with this treatment. It's up to each one of us, There's hope now. However, it does take serious commitment to a rigorous treatment! 

 

I hope I've inspired you to hang in there and commit to the treatment until you reach that time in your reversal when, like me, you will begin to enjoy life, family and friends again. It will happen! It only takes a mind made up to stick with it no matter what. When you do, you too will be celebrating life again! 

 

My Protocol Diary

1st Year  2nd Year  3rd Year  4th Year  5th Year  6th Year  7th Year

 8th Year    10th year

 

 

Copyright ©  2005 Carol Stous Hetler. All rights reserved.

Contact Carol at: chetler@satx.rr.com