Starting my 7th year on guai!
8-20-06
When the valley is deep
When the mountain is steep
When the body is weary
When we stumble and fall
When the choices are hard
When we're battered and scarred
When we've spent our resources
When we've given our all
In Jesus' name, we press on
In Jesus' name, we press on
Dear Lord, with the prize
Clear before our eyes
We find the strength to press on.
“But He knows the way that I take; when He has tested me, I will come forth as gold.” Job 23:10 “How precious to (concerning) me are your thoughts, O God! How vast is the sum of them! Were I to count them, they would outnumber the grains of the sand. When I awake, I am still with you.” Psalms 139:17, 18
This month, August 2006, is my 6th guai birthday! Wow, six years on the guai protocol!
Has it been easy? No. If you’ve been reading my journal, you know it’s been a long and hard journey. The above song from the Selah album ‘Press On’ and Scripture versus, too many to list have especially encouraged me the last few months. When I have a symptom resurface or intensify after 6 years on the protocol, I still go through periods of wondering if I’ll ever reverse completely. I then stop and think of all the improvements and know I’m reversing, but on those difficult days that still come occasionally, I wonder how long will it take?
My brain-fog lifted quite a bit for about 8 months, last year. During that time, I got a lot done on my book project. Then in January, I started a cycle and my brain hasn’t wanted to function as easily since then. Now it’s ‘work’ to write and it just isn’t coming as easily as it did or as it has in the past...so I patiently work as I can, hoping for those clear-brain days again.
Since I’m still cycling quite often with very few pain-free rests, Dr. St. Amand recommended that I go to 900mg a day instead of the 600mg. Of course, that brought on a good size dose of hard cycling for about two weeks.
After six years, do I think the guai protocol is worth all the pain, fatigue, brain-fog and all the other uncomfortable problems that arise? You bet I do! When I think of all I’ve done this past year because of having more energy that affects every cell in my body, then yes it’s worth it! The other day I went out in the hot, Texas, summer heat and manually washed my car and my husband’s truck. Six years ago, I couldn’t even lightly wash one car, let alone two! I’m so thankful for the extra energy this year that has made it possible to enjoy holding and playing with my two grandsons and my nephew’s new baby daughter. It’s so wonderful to go shopping, come home and have the energy to put away the groceries or other items I’ve purchased, and then still have enough energy to get a meal together for my husband and I.
Yes, the guai protocol is reversing my fibromyalgia. I thank God, again and again, that He gave me Dr. St. Amand and Claudia! I’m looking forward to my 7th year and all the improvements that are going to take place!
08-26-06 - A post to GuaiGroup:
21 years ago this coming November, I contracted mononucleosis and gradually over a period of two years became debilitated with fibromyalgia. For the first 10 years, I was diagnosed with Chronic Fatigue Immune Dysfunction Syndrome, which I thought was my main problem. Then in 1995, after a head-on car collision, the fibromyalgia became more apparent, which I now know was the problem all along.
My 21-year fibromyalgia journey has been one with many moments of anger, resentment, bitterness, a sliver of hope, small victories, and now joys at all the improvements!
Of course, the sliver of hope began in April 2000 when I first read Dr. St. Amand and Claudia’s book, WYDMNHTY. After three months of preparing for the protocol, I started it. (I had terrible brain-fog and draining fatigue, at that time, so it took me awhile to figure out what I needed to replace and then find the energy to go shopping to purchase all the replacements.) The last six years of my journey with fibromyalgia has been a mixture of fear, determination, confusion, perseverance, frustration, and resolve.
The victories and joys have just in the last six years, become part of my life. At first, the victories were VERY small victories. The first two years were hard, but the improvements I’m now experiencing, far outweigh the difficulty I’ve been through, to get to this place. You’ll find my progress reports in the Archives, so I won’t bore you with a repeat of these improvements, although I love talking about it!
With the completion of my 6th year, I see even more progress in the previous improvements and then some new; like, taking care of my 9-month-old grandson for 6-8 hours, without my TMJ flaring up. Eating onions again...can you believe that no onions in my diet as been one of the things I missed most with my deterioration? Of course, my brain was what I missed the most, but having been raised in South America, I was raised on home-cooked meals made with A LOT of onions...they could have added so much to my HG diet. After Mono when I developed the Multiple Chemical Sensitivity Syndrome, onions started to give me severe headaches with severe pain flashing through my head. Dairy products were a no-no too, if I didn’t want to feel nauseated and look pregnant! Just this past month I’ve been able to eat onions with no side effects and I’ve been able to eat some dairy! Life is good!
Sure, I’m still cycling--I’m still purging phosphates from my cells, but now I have so many phosphate-free cells, that my body is beginning to function more normal and life is looking good again!
Don’t give up on the guaifenesin protocol! It takes time. It takes patience. It takes perseverance! If I can do it, you can do it. Just dig deep to find the resolve you need to keep getting up every day and facing more pain, more fatigue, more brain-fog, more depression and all the other intensified FM symptoms you’re having, as a result of the protocol.
I’m here to say, six years later, that if you persevere through the difficulty, you’ll gradually begin to see, through the fog of pain and fatigue, that twinkling light at the end of the tunnel. Hang in there! The fog will gradually lift and that light will get brighter and brighter.
Seek support! You CAN do this and you WILL be a vibrant human being again! You too will be forever grateful to Dr. St. Amand and Claudia for giving us the answer to our collapsed life.
8-30-06 - another post to GuaiGroup:
There I stood shucking corn while I babysat my grandson. When I got to the 10th one, I suddenly realized, “Wow, I shucked 10 ears!” This is a miracle since I wasn’t able to even shuck one, let alone 10, when my CFIDS was so severe.
Yesterday when I took the clip out of my hair that had been holding it up all day so I could stand the 100-degree weather we’re having here in Texas, I realized that my scalp didn’t hurt at all! For years, I haven’t been able to pin my hair up or if I did, it was sore for hours after removing the clip.
I’m starting my 7th year on the guai and I continue to have these small improvements that add up to a much improved quality of life; thank you Dr. St. Amand and Claudia!
I’m a Guaier who's been doing the protocol on my own without local professional help for 6 years now. My only help has come from on-line help from Dr. St. Amand, Claudia and the advice and support from the Guaigroup Admin ladies, bless their hearts for volunteering their time and energy!
I’m here to say that anyone can do this on their own, if they have the resolve and the will to persevere through the down times. The first couple of years, I cycled more down times than up times. Perhaps because I alone was trying to figure out my genetic dose and I was blocking, as most Newbies do. Six years later, I have bad days, but they are less intense and thus more bearable. My good days are wonderful!
The ideal way to do this treatment is with Dr. St. Amand doing the mapping and perfecting your dosage or another doctor and mapper who follows his exact instructions. However, if this isn’t possible, you will be on your own and your reversal may take a little longer, but it will take place!
The secret is to have a well-kept symptom journal. My daughter, Cherylyn, and I have as our own motto, “Wait, watch and see!”
10-18-06 - Cherylyn's computer crashed and we've not been able to publish to the website for over a month now. Thankfully, she's up and running again! My manuscript is slowly evolving into book material. It's been so slow with Hedy only able to edit in between her part-time job with NTM. I've had some tougher purging cycles of late that has also slowed me down a little. But the purges are getting less and less painful again.
Cherylyn and I went to walk at the track Saturday night and Cherylyn started jogging, which she hasn't been able to do in several years. I didn't see her again 'till she had jogged a mile and came up behind me and said, "I can't believe I can run without pain. I think I'm going to cry." She said she had no pain so she just kept going. She was so overcome with emotion because she has never been able to run without pain in her chest and ribs, even during volleyball practice, in days gone by. So, she's tickled pink to see this major improvement!
The muscles in my abdomen are quite swollen. It puts pressure on my diaphragm, which aggravates my acid reflux problem. I also feel very bloated and swollen. I'm pretty sure the swelling is purging in those muscles because my stomach looks lopsided with most of the swelling on the upper right side just under my ribs and the lower left side. I'll be so glad when the stomach area is finally cleared!!
Post to GuaiGroup 10-15-06
My husband and I were invited to a block party. I couldn't get enthused about going. Another social situation. Another attempt at trying to explain my disease...that no one has heard of. My neighbors knew I had a disease and had already commented on my improvement. So I was anticipating that the subject would arise sometime during the party...
The day before the party, I sat and thought about what I would say when the subject arose. I wanted a short, concise way to say what I believe fibromyalgia is and what the cure is, according to Dr. St. Amand's theory. I used the following and actually didn't see that blank look come over my listeners! They actually seemed to grasp what I was saying!
I share this very simplified version with all who have searched for words to briefly describe what fibromyalgia is. If you're as convinced as I am that Dr. St. Amand's theory is the answer to the fibromyalgia confusion and ignorance but haven't know how to explain it, then feel free to use mine if it suits. Say it with confidence and enthusiasm because we NOW know what the problem is and how to fix it! Remember, most people can only handle a few sentences when describing something they know nothing about...
"Fibromyalgia is an inherited disease. A genetic defect in the kidneys prevents the body from getting rid of phosphates. Consequently, the bloodstream carries it back into the body. Excess phosphates are stored in tissue and bone. Over time, the stored phosphate begins to interfere with the body’s ability to produce energy.
A drug that “fixes” the genetic defect is guaifenesin. It enhances waste management and allows phosphate to leave the body through the kidneys. As phosphates are cleared, the body gradually returns to its normal function."
The more we spread what we believe with confidence, the more people will begin to understand fibromyalgia.
11-22-06 - Today when I made my Cranberry bread, my heart filled with thanksgiving when I remembered how just a few years ago my daughter had to help me make the bread. I was so weak so Cherylyn had to get the berries and orange juice ready for me. Today it’s so hard to believe I was that fatigued!
I had a colonoscopy last week and I’m SO thankful that I didn’t react the way I used to react to that sort of situation. The stress on my body would have put me in bed for several days. I actually handled it like a normal person!! Hooray for guaifenesin!
Hedy sent me the last of my manuscript. I’m getting excited...I’m seeing the finish line for my book The Pain Behind the Mask. It’s looking more and more like I will be able to publish it and start selling it in February!
I have much to be thankful for this holiday season!
12-19-06 - Posted to GuaiGroup List:
Are you feeling depressed? Discouraged because it's the holidays and you can’t really enjoy it because you're so tired and weary. Frustrated because you're so brain-fogged you can't remember what still needs to be bought or done to be ready for Christmas.
That was me several years ago and I had felt that way for 17 years. I had Mono in the fall of 1985 and dreaded every Christmas after that year. When I saw fall coming, it also brought anxiety and apprehension because it meant that extra energy and clarity of mind were soon going to be needed. Fall meant Christmas was around the corner, and I groaned just thinking about gift-buying and “getting ready” for this special event.
I've been on the guai treatment for six-plus years and I can honestly say that I no longer dread Christmas. The guaifenesin treatment has resurrected my girlish excitement and anticipation for Christmas; an event that was always special growing up and one that I’ve continued to hold dear with my own family.
My fatigue has lessened so much so that it's hard to believe it was just four years ago that I was still dreading the holiday season. Yesterday I got up at 7:30 after only 8 hours of sleep (not 10-12), ate breakfast, showered and got ready to go food shopping for our Christmas Eve celebration and Christmas Day Dinner here with family. I shopped for about an hour, came home, put my groceries away, left again with my youngest daughter to go shopping with her for two hours and then went and stood in line for my oldest daughter who was bringing my grandson to see Santa. For 40 minutes, I was actually able to carry on an intelligent conversation with the woman in front of me. (A miracle for me with the debilitating brain fog I’ve had for years) I stood there gabbing until my daughters came---we stood there 25 more minutes. After Nathan stared at Santa and then acted like Santa was Grampa and he was just hanging out with him, my daughters, and I went to Santa's Ranch to go through a Christmas Light extravaganza. At 9 pm we headed home...I still didn't feel very tired.
I say all of that to say that I'm more myself today than I've ever been since 1985. I was always one to be on the 'go' and I was devastated when there was no more energy to GO. Until guaifenesin reversed my FM enough, just doing ONE of the above activities would have been too much for me. I can't tell you how thankful I am to Dr. St. Amand and Claudia for their determination to get the word out about the guaifenesin miracle!
If you're a newbie or even an oldie who is still struggling with fatigue, please take hope in this post. Do NOT give up! It took me four years on the guai to really begin to feel more like my old self again. I still struggle with brain fog, but since that was one of my first debilitating symptoms, it will probably be the last one to improve. It has already improved quite a bit, just not as much as my energy level.
Have hope you will also, some day soon, anticipate the holidays with excitement and joy. The fact that I did all the above and am up early again today writing a post before I go and make my annual cinnamon rolls is a testament to the miracle of guaifenesin for fibromyalgia!! Take heart in this.
1-02-07 - The Holidays have come and gone. Sisters have come and gone. And I'm still going strong! What a miracle! We had 10 people in for Christmas Eve celebrations and our usual gift sharing 'bash' and then 10 people in for Christmas dinner. Spent time seeing San Antonio with sisters and I'm still have enough energy to go back to working on my book now that life is back to a normal schedule.
No, it wasn't all pain free. I'm purging my neck and on Christmas Day my neck was so stiff that I was about ready to go put on my neck brace. Sharp pains in my neck has forced me to use Darvocet a few times at night. Yet, in spite of the pain, I 've had enough energy (thanks to guaifenesin purging cells!) to enjoy the holidays and my two sisters who were here visiting. Before guaifenesin, I would have had a relapse by now! How can I ever repay Dr. St. Amand for giving me my life back!!
2-16-07 – Saying good-bye to my daughter is exciting and yet sad. She’s only moving ‘out’ and over to the other side of town, but I will miss seeing her everyday. After 23 years, it will take a little getting used to not having her around. I’m so used to looking at her face to gauge how she’s feeling. I remind myself in my pensive moments how glad I am that she has reversed sufficiently on the guiafenesin treatment to make her absence possible. She can now move out and begin the independent life she has wanted for so long and was denied because of her fibromyalgia. It’s been a tough two years for her on the protocol but her improvements are such that she can now support herself. She is finally able to put in 40 hours of work and still have enough energy to care for herself. Oh, that other FMers would take the guai plunge and discover the life that fibromyalgia denies them!
2-20-07 – I remember when I wrote the following in my journal two years after being on the protocol, Shelly and Tye (my daughter and son-in-law) continue to grow in their second year of marriage. At times I have to deal with feelings of guilt because by my standards I'm not being a good mother. I can't be involved in their lives as much as I'd like, sharing the excitement with Shelly of shopping and setting up their new home. I just lie here in bed, day after day. My logical thinking tells me it's not my fault. My emotional side struggles with my shortcomings as far as my roles in life. I feel so worthless.
It has been so wonderful to feel well enough to help Cherylyn move and get settled into her new home. I’ve been doing a lot of shopping for her and continue to be amazed that I’m able to do this now. Pain and fatigue no longer keep me from being the mom I’ve desired to be!! Thank you Lord God!
2-27-07 – We hear about people who were waiting for the “big break” and then were “discovered.” Or people who say that after their talent was discovered there life was “never the same again”. We see this happening live on the TV show American Idol. Those who have been discovered say, “It changed my life and it’s more than I ever dreamed of.”
Guaifenesin discovered me! Guaifenesin gave me the “big break” I was waiting for in my declining health. I didn’t have a great talent discovered nor am I now getting filthy rich. I have much more than all of that---I’m a fibromyalgic who is living again instead of just existing!
In discovering me, guaifenesin didn’t bring me fame and riches. It brought me peace, tranquility, enjoyment of friends and family again and pleasure in all that makes up “life” for me. It has given me a sense of fulfillment because I have functional value once again. In discovering me, guaifensin has returned the self-assurance that my disabilities had robbed.
I can say like so many, “It has changed my life and given me more than I ever dreamed possible!” May it discover many more fibromyalgics who are waiting for "the big break" in their declining health!
3-06-07 – “I haven’t felt this horrible in a LONG time....” has been going through my head all day today. I didn’t get out of bed ‘till 11:30. Having gone to bed at 11:00 last night, means I was in bed over 12 hours. I haven’t done that in so long that I can’t even remember the last time. My body is aching from the top of my head to my toes. Besides pain, I can’t really define all the others reasons why I feel so horrible---I just do.
3-08-07 - My dear friend, Heating Pad, is out of the drawer again. My evening and early morning snack is Darvocet again. Everywhere I go, Ibuprofen goes with me. Now the pain is concentrating in my tailbone area down to the back of my upper thighs. It hurts SO much! My brain is feeling numb again. I need to review what I did those first few years to cope with a hard purge.
I want to go lay down but I’m going to make myself log how I’m feeling because soon I’ll feel better and forget how dreadful I’ve been feeling. I want to remember that once in awhile I still have ‘bad’ days so that I can encourage others who’ve been on the treatment this long and encounter a day, a week or a month such as I’m having and wonder what’s going on.
I’ve been on the guai protocol for 6 years and 7 months now. Feeling this way was typical the first three years, but very rare in the last couple. I’ve been in a purging cycle for almost three weeks now—this week being the worst. Anymore, it’s rare that it go on for this long. But I know better now. I can’t predict what the guai is purging or for how long it will take.
I’ve learned these past six plus years that pain isn’t so bad. It’s funny how pain has a way of cultivating a satisfaction with myself. Pushing through pain to get things done, gives me a sense of accomplishment. Each time I endure pain my self-assurance grows a little more. After each painful purge, I feel good about myself because I’m choosing to do something that is ridding me of fibromyalgia. Pain continues to challenge me to maintain an open heart in the midst of conflict and suffering. It’s teaching me compassion for others who hurt.
So I press on taking it one moment at a time. When I compare how I was a year ago to now, I see even more improvement. I thought I was doing really well then, yet overall I’m doing even better. My improvements are so small and so gradual that I have to compare how I’m doing by months and years gone by. It was hard to get used to doing that. I was used to comparing how I felt to days and weeks gone by. What with antibiotics, hormones and such that heal and improve things quickly, for the most part, it was natural to want to compare my guai progress in the same way. I continue to remind myself that the reversal is gradual and that it takes time and patience.
Although the pain has been difficult to handle once again, I was still able to clean my shower and baby-sit my grandson. Doing anything besides laying in bed, would have been impossible just 3 years ago. Today at breakfast I was reminded why I continue to push through the now occasional pain of the reversal cycle. I had a juice-glass full of freshly squeezed grapefruit. Before the guai treatment, I wasn’t able to enjoy any kind of fruit.
What I’m accomplishing today in spite of occasional ‘hard’ purges, six plus years later, is more that I ever dreamed. I’m writing again. I’m enjoying relationships again. I’m enjoying life again! Thank you Dr. St. Amand and Claudia and all you dear Admin ladies!
(I want to clarify how many years I've been on the guai treatment so that I don’t discourage anyone thinking of going on the treatment or any newbie. I'm what I call a long-distance patient of Dr. St. Amand's. I've never had the privilege of seeing him or Claudia or being mapped by either. I've only had the privilege of emailing them for information. When I started the treatment, I did not have a guai-using doctor within driving distance nor a guai mapper. So basically aside from emails to Dr. St. Amand, Claudia and GuaiGroup, I was on my own.
When I began the treatment I was quite debilitated. My health had deteriorated to a point where many fibromyalgics have yet to reach. This also has been a factor in my reversal taking longer than the normal reversal period.
So with all the dosage trial and errors, the blocking I know I did and the point of debilitation that I started at, I would guess it's more 41/2- 5 years of FM clearing. Even though it's taking me longer, I will always be thankful for the St Amand protocol for fibromyalgia. It has resurrected my life and given me a reason to go on living.
The ideal way to start this treatment is to see Dr. St. Amand and if you can't do that then a guai-using doctor. If neither of those things is possible, then know that you can still reverse with this protocol. It will just take more diligence on your part seeking out information, more patience and it may take more time! But you will reverse the fibromyalgia!)
3-19-07 – Just received the proofs from Morris Publishing for The Pain Behind the Mask (TPBTM), Volume I ! It looks good. It’s so exciting to see my dream of writing a book that will help all other fibromyalgics, who suffer and long for someone to understand, come true! I’ve been working on the last of the editing for Volume II, but have been somewhat slow because I’ve been feeling pretty achy if I sit too long. Hopefully it will be ready for the printers in April.
4-28-07 - April has been a month of trying to stay on 1200mg of guaifenesin and get volume II done at the same time. It has worn me out! I know I'll clear faster on 1200mg, but I don't think I can stay on that dose. I purge and purge and purge and then have one day of no aching---then it starts all over again. Too many purges! After the first two weeks on 1200mg, sleeping became very difficult. I ached so bad at night I couldn't sleep...I was having to take Darvon off and on again.
Even before I had upped my dose, I was having severe pain in the front of my legs---like severe shin splints...that got worse! On my left leg, the pain was in my shin muscle, just under the knee. On my right leg, the pain was on the inside muscle just under the knee. Even if I hadn't walked or exercised it hurt. While just sitting it hurt so bad I had to go back on pain killers. That has all pretty much subsided now. My ring finger on my right hand continues to hurt when I try and close my hand or hold something (like coins) and then open up my hand. It still has the characteristics of a 'trigger thumb'... But from experience I know it will eventually clear up. Even though it may take months and months and months, the problems that pop up when purging an area do eventually go away
So I'm back down to 900mg and I'm feeling and sleeping better again. I'm still pretty worn out from trying to get TPBTM, Volume II to the printers by the end of April. It's there and hopefully that volume will be ready for release in June. I sincerely hope that TPBTM will direct many to the guai protocol because it will eventually give back to them a life they thought was lost.
Where have I been for five months?
9-29-07 - (Posted to GuaiGroup) May 2007 I had finished my book that I've been working on for two years, The Pain Behind the Mask, and had received the first volume back from the printing company and was anxiously awaiting the second volume to be printed. It was an exciting time for me. I was feeling more normal than I had in 22 years and was looking forward to being able to do things with my husband that had been denied us for so many years.
On June 3rd my world fell into pieces--scattered so far out that I couldn't even find them all. My husband of 35 years told me he had found someone else and wanted a divorce. I thought fibromyalgia was devastating! Little did I know.
When I wrote this paragraph in my book, I had no idea I was writing about my future and would be joining the many other spouses who've been abandoned because of their disease. "For some reason "for better or worse" is no longer a conviction. Many spouses distance themselves, wanting to get out of a situation where their life has taken a turn for the worse because of a debilitated spouse. The divorce takes place. Now, not only does the spouse with fibromyalgia have to continue living with physical pain, they now have to deal with the anguish that they've been rejected and abandoned. As they attempt to pick up the pieces of their life, they're tormented with the guilt that the break-up of the marriage is their fault, simply because they were unfortunate enough to have inherited fibromyalgia."
Gary did stand by my side during the hard, despairing years. What I didn't know was that when he saw me getting better, he'd decided that he had given enough and had a right to a normal life. While I was getting better on guaifenesin, I thought he was cheering me on because he was looking forward to celebrating my recovery with me and rebuilding our marriage to a more normal one. Instead, he was standing on the side waiting for me to get to a place where he could leave with a clear conscious.
The last three months have been the most difficult of my life. Yet, I never relapsed. I can't imagine how life would be right now if I didn't know about guaifenesin! Everything I've learned about coping and living life with a debilitating disease is helping me handle this new crisis in my life. In some ways, it's much the same: I grieve, I let myself sob, I accept, I sob some more, I submit, and choose to go on as best I can. I'm slowly and sometimes hesitantly learning how to find all the pieces of my life that have been scattered everywhere, and rebuild. Some of the pieces have been lost forever and I'm having to replace them with new pieces. It's like a puzzle and I'm so grateful that with God's help and the help of guai, I WILL eventually put the puzzle together.
I had already planned to get back into the working world when I finished my project. I'm blessed to be able to start back in my daughter's gymnastic gym with family who understand that I may not be quite ready to take a lot on. Seven years on guai! Where has the time gone? Busy reversing!
If you're a newbie wondering if the treatment is worth the trouble you may be encountering, take it from me--one of the ones who’s had a difficult time reversing and who because of guai can face yet another devastating circumstance in my life--YES, it is worth all the trouble! Have patience. Remember there's a lot of 'trial and error' in the reversal process. Our body continually gets better and changes, so we make changes. We attempt new things not really knowing how close we've come to our body's once normal in any given area: physical, emotional or mental. We realize where the body is at in any of these given areas, only through trial and error! That's what I anticipate doing as I seek a new life.
-----------------------------------------------------
On June 4th I quit taking my guaifenesin. Since I'm still cycling purges that at times make me feel very weepy and emotional, I knew I wouldn't be able to handle the first few months of a divorce with purges. See 8th year for new dosage...
1st Year 2nd Year 3rd Year 4th Year 5th Year 6th Year
Copyright © 2005 Carol Stous Hetler. All rights reserved.
Contact Carol at: chetler@satx.rr.com