Starting my fourth year on the guaifenesin treatment!! I’m still just a ‘lurker’ on the support group list. My brain just can’t function yet to try and figure out the posting, etc. One of these days…
9-11-03 Dear Family and Friends - Shelly, Cherylyn and I had a wonderful 5 day trip up to Rogers, AR to see my niece, Linda, get married. My sister, brother, parents and many nieces, with their families, were there so it was also a little family reunion. The girls and I stayed in a motel that had a full kitchen. We ate out for our larger meals everyday, thoroughly enjoying ourselves!! I shouldn’t be amazed at how well I did with all the improvements I’ve seen in the last three years, but I am!! I can actually leave Texas for awhile and not come back in horrible shape!!
After we got back to San Antonio I had an appointment with a dermatologist about a sore on my back that I have had over a year (my PCP never seemed worried about it). After looking at it, she was pretty sure I had basal carcinoma on my back. Her concern was that the area was so large. It's about 2''x21/2' and she's concerned about the stitches staying in when they cut it out.
On August 25th I had to go to the hospital to get an endoscope done that had been scheduled for about a month. I had been having trouble with getting food and pills stuck in my throat. That was easy because I was asleep during the whole procedure!! The doctor did have to dilate the throat area. He also found a hiatal hernia and took a biopsy of that to see how serious the problem in my esophagus is…
Sept 8th the results are in…I have Erosive GERD (gastroesophageal reflux disease), and esophagitis. He has started me on a drug....in my research, I found that this problem is very typical with people that have Fibromyalgia......
Sept. 2nd I got a call from my dermatologist's nurse at 9:40 in the morning asking me if I could come in for the skin cancer surgery at 11:00 am...they had had a cancellation. After twice as many injections as most people (I don't numb very easily....) the doctor left me with 31/2" incision with 12 stitches...going to be a big scar. It hurt real badly the first couple of days, but is feeling pretty good now. It’s healing really well.
Sept 10th I just received a call from my dermatologist with bad news...the biopsy results are back (from what she removed) and she wasn't able to get all of the cancer. She had warned me that this might happen since it’s been there for so long. So the next step is to wait to get the stitches out, next Tuesday, and schedule surgery with a different specialist who will do a different procedure called Mohs. This will take all morning because they do a biopsy on each layer right then until they get all the cancer. Needless to so say, I'm dreading another incision and possible skin grafting....
The good news...there is some...is that any one of these things, including the trip to Arkansas, three years ago would have single-handedly sent me into a relapse. That hasn't happened!! I'm so excited to see that I've been able, so far, to physically handle these different stresses. I continue to thank God for Dr. St. Amand and his treatment for Fibromyalgia and Claudia who is tirelessly trying to spread the word about this treatment.
12-8-03 - Dear Family and Friends…
"I will trust in God's unfailing love forever and ever. I will praise you forever for what you have done; in your name I will hope, for your name is good. I will praise you in the presence of your saints" Ps. 52:8b, 9
"…. I will trust in your unfailing love; my heart rejoices in your salvation. I will sing to the Lord for He is good to me" Ps.13: 5,6
I want to ascribe to the Lord the glory due His name by sharing what He is doing in my life. I recovered well from my two surgeries on my back for the skin cancer and the endoscopy. I was sailing along rejoicing at my overall improvement when BAM I was suddenly filled with dread and anxiety. I had found out that the drug I’m taking for the treatment of my fibromyalgia was no longer going to be available. I discovered this by reading the weekly postings on my doctor's website. People were discussing stocking up on the drug and I wasn't sure what they were talking about. I found out that week when I ordered my monthly refill and the pharmacy told me they were no longer going to be able to fill the prescription. I emailed Claudia and asked her if this was true. She asked me, "Where have you been? This has been going on for a year now." Needless to say, I hit bottom! I went back to the website and found a link describing the whole problem.
Guaifenesin is a drug that is 100 years old or more and because it was just grandfathered into the medicine world, there was never any FDA approval for the long-acting guaifenesin that is the prescription that I have been taking. A drug company in Dallas patented it last year bringing it to the FDA's attention that everyone else was producing and selling it illegally. Thus everyone was told that by Nov.'03 it could no longer be produced, sold or dispensed without the costly application for a patent.
As I read the information, I literally freaked out. I have seen SO much improvement being on this treatment that I couldn't imagine going off of it. I began to question God on WHY did He allow me to find out a month before the product would no longer be available? I could have been stocking up which is what Dr. St. Amand had advised everyone to do, unbeknownst to me. Gary, bless his heart, searched the Internet, nation-wide and internationally for me, and the drug was just no longer available. Two days of feeling like I wanted to scream out my frustration and helplessness, I heard a still small voice saying, "Carol, aren't I the one who made you aware of this treatment? If I want you to continue with it, I WILL provide for you. Trust ME"
"When I said, "My foot is slipping," your love supported me. When anxiety was great within me, your consolation brought joy to my soul" Ps. 94; 18,19
I was very tempted in the following days to doubt God and worry about the 'what ifs'. Whenever I had a negative thought, I would just say, 'I will trust YOU. I will choose to trust in your unfailing love and I will choose to believe you when You promised to take care of me. I will choose NOT to worry about this."
In the last few weeks, I have found resources for obtaining the drug, just have to pay double and triple what I’ve been paying. But it is available. The emotional stress did cause a fibromyalgia flare-up that I’ve been dealing with for a couple of weeks now. I'm feeling better now and I’m realizing that possibly the reason why God did not allow me to have the above information earlier was because I would have been worrying, needlessly for a whole year, about the whole problem. God is so good! He was taking care of me by keeping me in the dark. God knew I wasn't going to have any problems getting the drug this last year. Actually, I found a pharmacy that is still dispensing. Maybe I have one more month…. I do know in my heart that if God wants me on this treatment He will CONTINUE to provide for me!
"The Lord is good to all; he has compassion on all He has made." Ps.145: 9
In thinking back to a year ago, wondering how I missed this important news flash, I realized why I never found out about this problem. A year ago I had severe tendonitis in my right elbow and for several months I was not able to get on my computer at all, except for personal emails. It was last fall when this news flash was the talk of my two website postings… God in His grace knew that I was already in enough pain. He saved me from having unneeded emotional stress and pain. What a good and loving God we have!!
Next time I don't understand my circumstances and God's ways, I will remind myself of this event and how God showed His sovereignty, love and graciousness towards me.
"I will remember the deeds of the Lord; yes, I will remember your miracles of long ago. I will meditate on all your works and consider all your mighty deeds" Ps 77:11.12
5-17-04 Dear Joy….I am some reluctant to write this email because I just haven't been doing well for about five months now. My brain just doesn't want to function. I'm constantly saying things backwards and transposing letters when I write emails...it gets pretty discouraging. I'm not sure what I'm cycling, but it has been rough.
I've been having serious problem with fatigue. No energy whatsoever. This of course affects everything; emotional, physical and spiritual. I don't share much with my family because I know they find it very discouraging. I know they hurt for me so I keep a lot inside. I don't say much at all to my parents or siblings because they just don't understand. How can they? How can anyone truly understand this unless you suffer from this disease.
My greatest struggle during these episodes of low energy is feelings of worthlessness. I get so little done during the day and wonder where the day went at the end of the day? I have no enthusiasm to do anything...basically feel blah, which then leads to depression. When I have my devotions, I have to read a sentence several times to comprehend what I'm reading because suddenly I realize that I'm not digesting anything I'm reading. My mind has just gone blank....
My memory is really bad....I mean seconds later I can't remember what I was saying or doing. It gets pretty scarry. Maybe that's a lot of my depression too...is the anxiety of where this is all going. How much worse? How much longer?
I was reading in Psalms 94:18,19 and thought it sounded like it was coming from my heart...."My foot is slipping", your love, O Lord, supported me. When anxiety was great within me, your consolation brought joy to my soul." This verse has been such an encouragemnt to me these last few years.
I can tell you that Psa. 55:22 is very real in my life..."Cast your burden on the Lord, and HE SHALL sustain you..." Many times I feel so apathetic that I forget to call on the Lord for His help. Pray for me that the Holy Spirit will get through my foggy brain and remind me to call for help,,,:) (I now know that I was on way too high of a dose and that was causing a lot of my problems at this time).
6-21-04 - Dear Michele, Thank you for your prayers for me. It has made a difference! My folks were here to visit us last week for four days and we enjoyed our time with them so much. I have been meditating on some thoughts from Oswald Chambers this past difficult month:
"Discipleship is built entirely on the supernatural grace of God. Walking on the water is easy to impulsive pluck, but walking on dry land as a disciple of Jesus Christ is a different thing. Peter walked on the water to go to Jesus, but he followed Him afar off on the land. We do not need the grace of God to stand a crisis. Human nature and pride are sufficient, we can face the strain magnificently. But it does require the supernatural grace of God to live twenty-four hours in every day as a saint, to go through drudgery as a disciple, to live an ordinary, unobserved, and ignored existence as a disciple of Jesus. It is inbred in us that we have to do exceptional things for God; but we have not. We have to be exceptional in the ordinary things, to be holy in mean streets, among mean people, and this is not learned in five minutes."
"You can see God using some lives, but into your life an obstacle has come and you do not seem to be of any use. Keep paying attention to the Source, and God will either take you around the obstacle or remove it. The river of the Spirit of God overcomes all obstacles. Never get your eyes on the obstacle or on the difficulty."
"His purpose is that I depend on Him and on His power now. If I can stay in the middle of the turmoil calm and unperplexed, that is the end of the purpose of God. God is not working towards a particular finish; His end is the PROCESS - that I see Him walking on the waves, no shore in sight, no success, no goal, just the absolute certainty that it is all right because I see Him walking on the sea. It is the process, not the end, which is glorifying to God. God's end is to enable me to see that He can walk on the chaos in my life just now."
This disease, Fibromyalgia, and the treatment that I am on have brought about a very lonely and pain-filled life for me. My circumstances become a real drudgery at times. It is taking the supernatural grace of God to enable me to be His disciple in spite of everything. Your prayers have helped and I thank you for thinking of me. The thoughts above have been an encouragement to me to have faith in God against everything that contradicts Him in my circumstances. I will remain true to God's character whatever He may do. "Though He slay me, yet will I trust Him" - this is truly what faith is really all about.
1st Year 2nd Year 3rd Year 6th year 7th Year 8th Year
Copyright © 2005 Carol Stous Hetler. All rights reserved.
Contact Carol at: chetler@satx.rr.com