YEAR TWO – My emotional state this year consisted of less depression, more guilt feelings, impatience, discouragement and much more hope. I was feeling more energetic and would attempt more activity that some days went fine and other days were disastrous for me. I was discouraged that I had had to go back to my strict diet. For 8 years I had been on a strict, rotating, Candida food diet because on my Multiple Chemical Sensitivities problem. Then I got better. Now I was having those symptoms again and had to return to that awful diet…very disheartening. Discouragement and impatience seemed to dominate my mind while I tried to exercise and get back into some kind of physical shape.
8-23-01 – Yesterday and today have been better days for me. I’m starting back on a stricter diet. I haven’t had problems with Candida or hypoglycemia for years now. But just recently I’m experiencing all the problems that go with that again. I would guess it's because I have reversed to a time when it was a real problem. So, I’m cutting way down on carbs and eating NO corn or the no-no’s that Dr. St. Amand has on his list.
8-28-01 – Debbie, I am feeling better because I’ve not had to be in bed, during the day, for about a week now!! So, I'm not going to tell you to 'hang in there'. I'm going to encourage you to instead 'be hopeful'. Having hope is the secret to getting through this treatment. When you lose hope, read the testimonies on the websites. I’ve started a 'hope' file where I save emails that encourage and inspire me. I also copy posts that are inspiring and put them in that file. When I’m feeling 'down' or hopeless I go back and reread them. :)
9-6-01 My life consists of being in bed then out to do a chore then back in bed again then up again.....:) My reversal continues to be hard for me, experiencing the symptoms I've had for 16 years now and sometimes worse than it was. I do have a few 'good' days that give me enough hope to press on with this treatment. It would be much easier if I could go see Dr. St. Amand instead of corresponding through email. He goes so much by the changes in the ropes and lumps in the muscles as to determine whether a person is on the right dose or not. It took me 10 months to get to the dose I'm on now. In the last two months I have seen significant changes (improvement) in my muscles (lumps and ropes) that lead me to believe that I'm on the right dose. But it has also increased my 'bad days', as in bed a lot, that I have to wonder if I'm purging too quickly. It gets rather complicated.
10-04-01 Hi Mom, thinking on this has been good for me this week - "Satan's GREATEST weapon in defeating Christians isn't trickery, hatred, malice, anger, rage, sensuality, etc. Discouragement accomplishes Satan's evil work the best. With this he can make the lives of many folks seem of no value. With discouragement, he can make them just lie down and give up and become useless and never realize that it's Satan trying to destroy their life; their walk with God and their ministry to others."
10-23-01---Hey Debbie, I've had a very hard 2-3 weeks now. Just walking and having my pants or shorts rub on my inner thighs is painful. My tie strings on my pants have these metal thingies on the end. When I walk, they hit my pelvic area and it literally hurts!
I feel like I'm in this pit of depression. It's the kind of depression where you just want to sit and stare. I don't feel lonely, sad, etc. because I don't feel anything!! I'm numb!! My brain is dead so I can't really read or study because there is no concentration. Don't want to visit with anyone because I can't concentrate long enough to listen to what the person is saying...can't hold a thought long enough to carry on an intelligent conversation!!
I'm brain dead during the day...just want to sleep or stare. The minute I go to bed, my mind comes alive and I'm writing emails, writing articles, carrying on conversations in my mind. The minute I get up again, it's like my brain clicks off. Maybe, I should ask my friends and family to come sit with me in the dark at midnight and then we can visit! I feel like a baby that has its nights and days mixed up.
I guess when I get the most discouraged is when I want to do some Bible studies and I just can't these days because my concentration is nil. I can't keep a thought going to make it profitable. I used to share with Gary and the kids what I either read or studied....can't remember long enough to do this anymore either. I do miss my Bible studies. While on the field, I didn’t have time to do deep studies. Since being back I’ve appreciated that aspect of my illness that allowed me time to do that until the car accident that started the TMJ problems…so not only can I not study because I’m brainless, but it really aggravates my TMJ which leads to severe pain and headaches…sigh I pray that this all clears up soon….
My muscles have been real weak this last week, so I haven't been on the computer much at all. When I go through these 'purging cycles', I get discouraged, especially when they last so long, and then I begin to wonder if I'll ever have the same results as all those other people that have totally reversed their fibromyalgia. But then I stop and remember all that has improved. I can now use some of the scented shampoos that are ten times better for my hair than what I had been using. I can wear some of my perfumes again. I'm able to wax my kitchen floor again!
On my non-purging days, I have more energy than before. When I shop, I don't come home and drop :) The whites of my eyes are white again. Cherylyn keeps saying how much better my skin looks. My nails have greatly improved. The large lump I had in my lower back muscle that has been there since that head-on collision (1995), which ached for so many years, has now greatly reduced in size!! That is the biggest and greatest thing that has improved!! So I really do have much to be thankful for!
11-23-01 Cherylyn was able to wax the kitchen floor this week and it didn’t bother me!! It's so nice to see a shiny floor again!! She’s been able to wear perfume (certain ones) and it hasn’t bothered me. She keeps saying, “Are you sure it isn’t bothering you?” She can’t believe it either! I’m so blessed to have a family that really cares about me and that they are willing to change or not use things they like to make life better and easier for me. Thank you God for my precious family!
12-01-01 - This year is the first time in 15 years that shopping for Christmas wasn't such a hardship. I actually had the strength to keep going after I got home from shopping!! :) I am doing so much better now! Monday I got all my decorations up in one morning. This may not seem strange to the average person. But considering that it used to take the best part of a week for me to get my decorations up, this is just wonderful!! When I think back it's hard to imagine that it took me that long. I would get tired and have to rest...so it took time. I'm not dreading Christmas this year like I have in the last decade :)!
12-01-01 Hey Lisa, -I’m done shopping. This year is the first time in 15 years that shopping for Christmas wasn't such a hardship. I actually had the strength to keep going after I got home from shopping!! :) I’m doing so much better now! I bow before God with a heart full of thankfulness and praise for His faithfulness during this reversal process!!
Monday I got all my decorations up in one morning. This may not seem strange to the average person. But considering that it used to take the better part of a week for me to get my decorations up, this is just wonderful!! When I think back it's hard to imagine that it took me that long. I would get tired and have to rest...so it took time. I'm not dreading Christmas this year like I have in the last decade J!
12-05-01--- I am praising the Lord for leading me to this treatment I'm on because I am feeling SO much better. Sunday, Cherylyn and I got out the new Christmas tree we just bought (our other one was 12 years old and needed to be replaced about three years ago!). We got it up and the lights on it that afternoon and evening. It took longer than our other one because this one is a fir. Each little branch had to be pulled out. It's time consuming, but sure is pretty! Tye and Shelly didn't come over Sunday because they wanted to spend the day together since Tye is going to be out of town the next two weekends. So we're going to decorate the tree Thursday, even though I still had enough energy to have done it then!! :)
1-1-02 - I am doing a lot better. I realized why I haven't been doing so well. I've been blocking with a product that has the salicylates that block the work of the guaifenesin. When I originally bought it (when I first started the protocol) I thought it was on the ‘okay’ list. Anyway, I kept interrupting my cycle. When I would quit blocking after a day, it would start full force again. I was taking these pills about once every week.
2-19-02 - At times, I have to deal with my feelings of guilt. By my standards, I'm not being a good Mom. I can't be involved in my children’s lives as much as I'd like when I lay here in bed day after day. My logical thinking tells me it's not my fault. But my emotional side struggles with feeling of worthlessness and my shortcomings as far as my roles in life. Guilt feelings are probably one of the greatest struggles that we who have Fibromyalgia deal with on a daily basis.
02-22-02 –My dearest friend, Joy, I haven’t really felt well now for 6 weeks because of my cycling. More bad days then good days…the good days aren’t really good just better than the bad days. . I want to ask you to pray for me at this time that God's grace will keep me from discouragement and spiritual apathy. It is SO difficult to not be discouraged when day after day there is pain or horrible fatigue or both. After awhile, it's hard to believe that two months ago I was feeling SO good!! But, I do still have hope that there are better months and even years ahead. I’ve hesitated to share with my family and friends, in the past when I've needed prayer, because I hate to burden you with my problems. But last November when I shared my burden with you all, I definitely was aware of God's grace in the following weeks. Please pray that I will be able to rise above my pain and fatigue and demonstrate love to those around me and to those who God brings into my life during this time of 'deep waters' for me. Knowing that I have so many who care for me enough to pray, does uplift my spirit!! Thank you!
3-1-02 – I went to Sears to buy a stationary bike. I need to be exercising, but I’m still not able to walk, more than a couple of blocks, without a lot of pain in my legs. I’m going to try and build my muscles back up with the bike. I was in such great shape, as far as walking, until two years ago when I had to quit walking with Gary everyday because of the pain from my right hip into my right leg.
3-3-02 – tried the bike and I thought I’d be able to at least do five minutes…I was hardly able to do 30 seconds. I’m so discouraged.
3-4-02 - Dad thank you for your encouraging email! Yes, I like that song by Garth Brooks. It's good. Cherylyn is doing her senior thesis on the human nature portrayed in Job. After doing her research she said, "I've been living with a Job" I said, "Cherylyn I haven't had it anywhere near as bad as Job did" And she said "Yeah, but you've gone through the same feelings he had. Her spiritual insight continues to amaze me. She's always such a blessing to me.
She's right...Job went through disbelief, questioning God, then disillusion, hopelessness and then finally acceptance. I did go through all of these feelings. In '93 when God finally brought me to the place of acceptance of His sovereignty in ALL things, I was able to begin to grow through my trials. Actually, I had quit asking God to heal me because I really wasn't led to pray otherwise. I just felt like He was saying, "No, not at this time." But then two years ago, it seemed like it was time to ask God again for healing. Whether He sees fit to heal me or even show my why He's given me these 17 years of affliction doesn't really matter. He's sovereign. He's the potter. I'm just the clay.
I'm convinced, in my heart, that my healing isn't the big issue. Am I walking in obedience with God on this journey? That's the real issue. God's grace continues to sustain me daily. Thank you so much for your prayers during those times when the journey does get rocky and uphillish and causes me to grow weary. I really do sense your prayers making a difference!
4-1-02 – I read several emails in the guai website archives about women who suggested exercising the little you can, even if it's seconds, and slowly build up. Well, I didn’t realize what slowly really meant! After much trial and error, I’ve decided to stick to the amount of time I’m able to do, 30 seconds right now, for one week and then add 10 seconds each week. So far, so good.
4-10-02 – I haven’t been able to exercise at all for more than a week now. I’m cycling pretty badly and I’m just too fatigued. At this point, I feel its doing more damage than good. This journey is a journey of stop and goes. I just have to accept that sometimes I can and sometimes I can’t…maybe someday it will be a journey with all green lights!
4-22-02 - Hey Debbie, You can probably use a chuckle about now...I just wanted to share my recent fibro-fog with you...Whenever my cycling starts, it always starts with my brain seemingly 'shutting down'. Last Friday, I went to Kmart and was about done with my shopping. I was pushing my cart towards the front of the store thinking...."This seems heavy." I grabbed one last item and as I put it in my cart I thought to myself, "Wow, I bought a lot of stuff...I don't remember buying all this stuff...”Oh, this isn't my cart!" I had been pushing someone else's cart around for about 8 minutes. I decided to back track and see if I could find mine. I did...I hope the other person found theirs again. I then went to HEB, did some shopping there and then came home. During supper I was telling Gary something and he just started to stare at my blouse (I was getting a little offended because I didn't think he was listening to me). He finally said, "I think you have your blouse inside out." Sure enough! I was all over Kmart and HEB with my blouse OBIOUSLY INSIDE OUT!!
When I was at Kmart, several other things had happened (can't remember what) where I thought, "I need to get done and get home because I'm losing my mind again"... I figured having experienced fibro-fog yourself, you would appreciate my story!! :) :)
5-21-01 – I’ve been able to work up to 3 minutes on the bike! Sure takes a lot of discipline. I’m encouraged that I’ve worked up to 3 minutes from 30 seconds. But I can’t help but remember the many hours of volleyball that I played and the many miles I’ve walked with abundant energy and a sense of feeling strong physically. Those years are gone. I grieve that every once in awhile. I can’t focus on my discouragement at how little I can do, instead I have to focus on disciplining myself and be proud of what I can do!
6-22-02 – I’m cycling again and I’ve ‘lost my mind’ once again. I was washing dishes the other night and I couldn’t find my green scratcher anywhere. I had cleaned out the tea pitcher and continued washing dishes while I made fresh tea. I finally gave up on finding it. The next day when I poured the last of the tea in Gary’s glass, Walla….there was the green scratcher in the bottom of the pitcher……L I feel like I must have the brain of a goldfish whose memory is only 2 sec long (according to Cherylyn). I forgot that I was cleaning the pitcher!!! Needless, to say, Cherylyn and Gary thought their tea tasted ‘weird’.
7-14-02 – I have worked up to 8 minutes on the stationary bike. This last week I’ve taken on trying to walk around the block again. Just barely make it…but at least I’m able to do it without too much pain. Just feel pretty exhausted when done. Right now, the walking isn’t helping me feel better. But I’m going to keep at it and try and work up to a mile a day again.
I was lying on the couch resting waiting for Gary to come home from work. He came home, let himself in and then came over and just stood looking at me. Then said, “Come outside with me.” I wearily got up, wondering what he was all about. When we got out side, I saw all our mail lying on the grass by the car. I had come home from shopping exhausted and felt like I couldn’t think. Evidently, I had dropped all the mail trying to bring my purchases in. The sad thing is that I didn’t even remember that I had just picked up the mail from the mailbox! I had also forgotten to arm the T-bird before going into the house. With the car not locked and our mail lying all over the yard, Gary had a few scary thoughts…
It's hard to see my family have to put up with a wife and Mom that ‘isn’t all there’ …I’m not sure what I would do without their support and humor in these situations.
7-30-02 – We had a good time at Kedron’s wedding with Rob and Cheryl. I am having fewer symptoms when exposed to perfume and cologne. It’s so great to be able to go places and not react to the chemicals in the air! It was great to be able to enjoy eating their wedding cake too! Cheryl kept laughing at me because of all the cake I was eating. Hey, I was making up for years of not being able to touch wheat!!!!
I am walking a mile now four times a week and not feeling as tired when done! What an accomplishment! I have had more red and yellow lights this year on my guaifenesin journey…I’m looking forward to a time of more green lights! Patience, Carol!
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Copyright © 2005 Carol Stous Hetler. All rights reserved.
Contact Carol at: chetler@satx.rr.com