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![Here You Will Find a Unique Blog [Fibro Log] of My Monthly Walk with the Dragon!](http://www.managing-my-fibromyalgia.com/images/fibrologhandwithpencil.jpg)
SIDEBAR: This Web page carries my ongoing posts as to how I was doing and what was on my mind for the years covering 2004 to 2005..... Please visit often and read the updates.
My desire is that those with fibromyalgia will find some things in common in my experiences. I also hope that those who are friends, family or caregivers to those who have fibromyalgia may gain a greater understanding of the disorder; how it disables the sufferer, how it affects his or her emotional state, and thinking process. There may also be the opportunity for others to learn more about me and my life. I am sure the Web log will be therapeutic for me also.
We are using a reverse time-line for our posts. This was done to make it easier for our readers to find the newest entry each month.On April 9, 2005, we decided to and went ahead breaking up the Fibro Log into four [4] different Web pages to facilitate the loading of the pages in a more reasonable amount of time.
This page will start at January 2004 and end in December 2005. Page three [3] will cover the year of 2003, and page four [4] will contain the beginning post of April 2002 to November 2002. We have conveniently inserted text links for both pages at the beginning and end of this Web page.
"The biggest problem is not to add years to your life....but life to your years"
Go to the 2003 Fibro Log Entries.....The Wonder Year
Go to the 2002 Fibro Log Entries...The Beginning of My Monthly Posts
Go to the Last Post on this Page
December 2005 - Hello everyone. December has come quickly this year, at least it has for me. I am not so sad though.There have been many challenges.
I am thankful that Nancy's tests have come back not showing any cancer. She continues though, having problems created when she had been taking radiation therapy a couple of years ago. I believe that the term used for the condition is radiation cystitis.
I thank all of you who share ideas, information and encouragement to others on the Managing My Fibromyalgia Forum. There have several posts of late describing different forms of therapy or regiments having greatly reduced the symptoms of Fibromyalgia for the writers. I am very thankful that the participants have found ways to address their symptoms, and I hope that many others will be helped by following the described protocols. I also hope that others that try these protocols do not have their hopes squashed when some are not helped by following the recommendations.
For the most part, I have learned over the years by the BTTT [been there, tried that] school, that there are as many different levels of intensity of symptoms and as many different results of treatments as there are sufferers of fibromyalgia and chronic fatigue syndrome. This is the reason I describe each persons experience as one's personal fibromyalgia .. Therefore one must not get too discouraged if a certain treatment protocol does not successfully relieve one's symptoms as it has for others.
It is December so I must, for all our readers, wish for you to have a really wonderful Happy Holiday Season, and I pray you all recieve many wonderful blessings for the New Year . And if some times things do not go well, remember to keep your chins up.
Have a great holiday!....Bill
October 2005 I am sooooooo not ready for this, both physically and emotionally. Today is October 23, 2005 and it is necessary for me tomorrow to attempt to return to my regular employment at McCarthy Tire in Manassas Va.
Due to financial concerns brought about by a snafu on my doctor's reporting to the disability insurance carrier, we are still waiting for money from the insurance company. Nancy, my wife is still out on disability, although she is receiving her short term disability payments on time, it is not the same amount as her regular pay would be.[Nancy had to have more tests run at Sloane-Kettering in N.Y.C., a couple of weeks ago different from the tests I mentioned in my last post]. It is also very possible that she, based on a phone call to her about her test results, that she may have to take more time off in several weeks. All in all, it has been harder to make other payments on time after we make our mortgage payment. This is the first time both Nancy and I have been out on sick leave at the same time.
I am surviving on only aspirin and amitryptline [Elavil], since I de-toxed from my prescribed pain medications,at the end of this past August. Good old Bayer Aspirin has been the only over-the-counter pain meds that has given me only a small amount of pain relief. All the other over-the-counter pain meds, re: Tylenol, Advil, Motrin, IB Propin, e.t.c. have had zero [0] effect on my pain symptoms. This in not surprising to me for the fact that these mentioned medications never provided me any relief in the past.
I met with the clinical social worker for the first time a couple of days ago. I think all went well. I was not rattled at all, and was not hesitant to answer the inquiries she made. Some of the facts she quoted to me provided some food for thought.
She stated that men at my age, 57 plus, are a high risk group for both suicide and/or heart attack. This is due to the fact that the time is a pre-retirement age of 65, and we easily get replaced in the work force by younger people. One is also apt to start [I already have] falling into a time of chronic illness. It is also a time when a person [in this case a man] reflects on his past accomplishments, and realizes that he has not completed his many life's goals, nor has he amassed enough funds to see him through his retirement and golden years. It is a very stressful time of life for most.
There have been some days, more then I would like to admit to, where I sometimes regret not having the availability of prescription pain medication available. Sometimes the pain I experience is many times greater then it was before going cold turkey. My legs and lower back seem to be less tolerant of walking and standing ,even for short periods of time. I do not seem to have any exercise tolerance at all. These are the reasons that I am soooooooo not ready to return to work tomorrow I am for sure experiencing more pain than I did prior to going cold turkey. I just hope I can tolerate my symptoms when I go back to work. It appears that this time will be the first time I am returning to work after sick leave, actually feeling worse than before it began. I have come very close in the last couple of days of getting to the point of being tired of fighting this almost thirty [30] year war I have had with the beast [fibromyalgia]. I have managed to come back from three [3] previous extended sick leaves during the same period. One time with Hub Truck Rental Corp. 1980 [6 mo..], once in 2000 with Merchants Tire [6 mos.] and this current sick leave seemingly on schedule to end tomorrow [2 mos]. There was a time in early 1986 I thought the beast was going to sideline me when working with Jim Coffey and his Armada Trash Hauling Co., but I changed jobs and was able to regroup with an extra couple of weeks off between jobs. Then six [6] months later at Merchant's Tire I was seriously injured on the job which kept me out of work, so I was able to get the extra rest I needed while my right leg and foot healed. Back then Nancy was not working but at home with two [2] children and I was the only bread winner, so I had to work no matter how badly I felt. I guess I will just have to practice what I preach and keep the ol' chin up.
SEPTEMBER 01, 2005 - I can not believe that the summer is nearly over. I know the calendar tells me summer is officially over toward the end of September, but even after all these years, more years than I care to admit, I still feel deep inside that the true summer is over the weekend before Labor Day, just as it was when I was growing up. In the neck of the woods where I grew up, the new school year always started on the first Wednesday after Labor Day and the weekend just before that was always considered the final count down.
On that last weekend before school started, I can remember how when my pals and I would get together and the topic of discussion always centered around what we did during the summer break and what we wanted to do, but just never got around to do. We either had to resign ourselves to the circumstances or start the new school year with a chip on our shoulder and a very poor attitude.
Well, what does that have to do with anything, you ask? Well, probably nothing. It is just a wonderment to me that something that occurred so many years ago, can still have an effect on my life and thoughts today.
Meanwhile, since my last post I continue struggling with my health problems. The pace at work along with the daily commute has been taking its toll. It is continuing to be harder and harder for me to take life just one day at a time as I have been prone to do. My doctor and my wife are still pushing me to see a mental health professional to: [a] Help me deal with my increasing depressive moods, and: [b] Give me a better chance in obtaining necessary SSI as it is becoming more and more obvious that it will be nearly impossible to continue my regular modified employment set up and schedule. Dr. "G" still feels that a diagnosis of depression along with the fibromyalgia would give me better chances to obtain coverage.
I have recently read different opinions on this matter. That has not helped me in my increasing procrastination about choosing a doctor to see. I do know that if it became impossible to go to work today, without this necessary coverage, the loss of income may [will] have a serious affect on Nancy's and my financial position. It would be serious. We would likely lose our home, and worse. Thinking about all this surely does not ease my depressive tendencies right now.
My pain meds, even though a strong dosage, are becoming quickly ineffective no matter how much I take. I would like to start all over. I know doing so would be hard.......
August 30,2005. I sought the assistance of Medi-Corp, Snowden, Mary Washington Hospital to help me to ween off my pain meds....they were not much help. I decided to go cold turkey on all my meds.. Guess what? Within 24 hours I was considered ill enough to get an admission to the hospital to get the medically supervised help I needed on August 31, 2005........ To be continued.....
September 24, 2005. Although several doctors said they thought I was very brave to go cold turkey as I did, I would not recommend it to anyone. The first three days were like a living hell. Now nearly a month since then, I am still feeling extremely fatuiged and physically feeble. I am unable to walk any distance without a walking cane at my side. My concentration has been shot to hell.It is hard to focus on most tasks.
I had my second follow up visit with Dr. Ahmed yesterday, and I heard him say for the first time, recovery would not come overnight. He admitted that the condition that preceded this day was not only many years in the making, no "it was decades in the making" and my pain and fatigue would not just get up and leave. He started me on a new medication to try to get me well enough to return to work. Only time will tell........Only pain meds currently are over the counter pain medications.....
SEPTEMBER 28, 2005
I continue to regret not being with Nancy during her surgery today at Sloane-Kettering in New York City.
Spells of depression continue to come over me out of nowhere, especially during times of quiet or if I'm listening to music or watching some visual input that awakens a memory from down deep inside my soul. Tears seem to swell from out of my eye's ductwork and down my cheeks and I have no control.
It will be two more weeks before my daily dose of Elavil will be high enough to see if it is going to make a difference in how I am feeling and if my lack of focus and concentration will improve so I may get back to work.
Yes, I do enjoy having my Grandchildren and Krissy and Gregg at the house with me, but I still miss not having Nancy here.
We are already starting to feel the financial squeeze of my not working regularly, and this is already beginning to feed my depression and subtract from my self-esteem. Nancy had already prepared our wonderful daughter Rachel that it would be necessary for her to pick up some of her student loan payments that we had been making for her. Gregg likewise was put on notice about making a larger contribution to the household finances. Evidently, Nancy had been letting some of responsibilities slide, so the children could catch up on their finances.
Wednesday
Nancy was able to speak to one of Dr. Guillem's Fellows and everything has gone well. What a relief. She will be released from the hospital tomorrow and after a day or two of additional rest with our good friends in New Jersey, Roe and Vinny, she will be headed home to Stafford, Virginia. I hope that Nancy will not be too disappointed in my own lack of progress.
Either my levels of pain are increasing, or my tolerance to ward my body pain has taken a dive this past week. I can only take over-the-counter pain meds now since I went cold turkey on the narcotic types.
My Employer
I finally received a phone call from my employer, thanks to Roger Payne. He, like me, was hoping for my speedy recovery and return to work by either next week or the following week. I just did not have enough information at this point to make any commitments to Roger or McCarthy Tire Service, although I personally wish I could return this very day. I guess will have to wait on the doctor’s recommendations based on how my recovery is coming along. I see Dr. Ahmed again on October 20th.
As has been my experience in the past under similar circumstances, I have not heard a word from my boss, Stan Strickland. I know he is always working with more than a full plate, but it would be nice to hear from him. Especially so, due to our having worked together since July of 1986. It would be nice to hear from him some words of encouragement to me. It is a bit of a mystery to me, that a person with his spiritual background, can not the show some concern and compassion for those that work for him, without having to go by a select list of favorites. And the beat goes on......
This is the first time in quite awhile I have given serious thought about seeking out a volunteer or two, to assist me with the running of the "Managing My Fibromyalgia" Web site and getting the Fibro Help Network development off and running to become more than just an idea or concept. My dear wife Nancy has a full plate all the time and does not have the time needed to devote to helping me with my Web endeavors. I wonder if there is anyone out there interested in volunteering some time and creative juices. The work would not be compensated monetarily, but would be more a labor of love and desire to want to help others with fibromyalgia and similar chronic pain and fatigue syndromes. Some Web page design and development experience would be a plus along with any writing or copy writing experience. Meanwhile, back at the ranch [our Stafford homestead] there is not too much new to report. My son Gregg's first round of testing went well. There is no talk of the "C" word at this time. He is getting ready to go for another test tomorrow at 2:00 PM* Nancy, my wife, is set to travel to New York tomorrow for her annual check up at the Memorial Sloan-Kettering Cancer Hospital . My daughter Rachel will be going with her. The tests and visits with the doctors will take a couple of days. They decided to stay in a hotel in Manhattan and plan to take in a show one evening.** I usually don't feel very comfortable when Nancy has her tests and doctor visits. I am not set at ease until I have heard from Nancy that all has gone well and she is on her way home. As far as what I shared with you last month, I still have not made arrangements to select and see a mental health professional. If you recall, my doctor had suggested getting the evaluation of a mental health professional. The thinking is that it would make obtaining SSI a bit easier when and if, it becomes necessary to apply for assistance. Basically, depression can be better recognized as a legitimate disability and would add weight to the fibromyalgia claim as opposed to a claim based fibromyalgia alone. Logical? What do you think? As a famous radio announcer is know to say, "and now....the rest of the story". Nancy's first test and visit with the lung specialist on Wednesday went well. Her lungs are clear and there is no sign of any growths or tumors. Three cheers, o'le! She called me two days later from New York City, immediately after her visit with Dr. Guillem, and informed me that although the results could have been allot worse, she did develop small polyps in her j-pouch and on the anus. She will have the polyps in the j-pouch [a pouch fabricated from a piece of her intestine to function as a colon, in replacement of the colon removed] surgically removed by a doctor near by where we live in Virginia, but as for the polyps on the anus, it will be necessary for her to go back to New York near the end of September for minor [but important] surgery to remove these polyps. Dr. Guillem explained that the anus was such a sensitive and critical area that he himself only, would like to do this surgery. As for my son Gregg, his results were similar with similar size polyps also in the j-pouch and on the anus. We will know more by next week when he sees his doctor again. Well that's all for now. I have more than enough currently to keep my ol' chin up about. Keep your chin up also and Lord willing, I will write again to the log next month. Bill *[Through the magic of passing time and it taking me so long to put my thoughts down on digital paper, it is now several days later and I can fill you in on the results of Nancy's and Gregg's test results.]
July 2005 I hope that everyone had a good or quiet Fourth of July, Independence Day Holiday. Someday maybe we fibromites may be able to celebrate a holiday for the Independence from the tyranny of fibromyalgia, its symptoms and its effect on our lives, physically, emotionally, socially and financially. An effect, that many without fibromyalgia, may just never truly understand.
I have procrastinated much since my last post.
I did mention that I would touch upon my conversation with Dr. “G” during my visit to him this past May.
We were talking about the circumstances arising of me having to possibly go on disability [SSI], instead of my regular employment arrangements. Somehow the conversation ended up on the subject of depression as a result of my condition. It basically came down to the fact that Dr. “G” felt that it would be easier to obtain SSI if I were to see a Mental Health specialist to diagnose and treat these symptoms and use his expert observations to enhance my seeking of SSI coverage due to fibromyalgia and the effects of the symptoms on my life.
Has this been anyone's experience in seeking SSI? I guess this is one of the reasons for my procrastination. I am not sure if I am up to the effort of sitting with someone [a stranger to boot!] for a schedule of weekly visits, without any certain knowledge that the results would be positive in the end, or would I be committing precious financial resources to another dead end. I am betwixt and between. I just don't know.
Meanwhile, I have continued my routine of going to work, even though most days I am in tremendous pain, with it sometimes taking to mid-day to get some relief from my meds. Sometimes my co-workers show some consideration for how I am feeling and sometimes they do not. I survive mainly due to the fact that the work I do now, as I mentioned before, is nowhere near as stressful as it was in my previous positions before my last sick leave from work several years ago.
At home, my son Gregg has had some problems with his condition [familial polypopis]. I have discussed my son's history in other places in this Fibro-log and elsewhere on this site. His history parallels my wife Nancy's history with this disorder, having had similar operations early on to remove his colon.
Gregg has been neglectful in getting his recommended regular check-ups to remove any polyps that arise. We constantly remind him of the necessity of regular check-ups but he is 35 years old with a mind of his own.
At any rate he finally did go for his visit last week and then had to get several blood and other tests done. He and we are currently waiting on the results to come in and are anxious to hear the test results and what his doctor has to say. It should only be a couple more days from now.
I hope everyone will enjoy the summertime. Just remember to pace yourselves, recognize your limitations, try not to spoil anyone else's fun, and most of all, until next month, keep the ol' chin up!
June 2005 A Day in the Life... This month I decided to have my post describe just one typical day that I live today. I have chosen June 10, 2005, for no other reason than it occurred yesterday and there is less time for my memory to decline.
May 2005..Are you ready for an "Oscar'?
I have come to the conclusion that many, who suffer from the symptoms of fibromyalgia, CFS, or any similar chronic pain disorders, unknowingly hone their acting skills. This is done usually, during our daily walk as we interact with friends, family, strangers and acquaintances.
I'm not sure about most everyone else who walks with the beast, but it's natural for me [when interacting with others as mentioned above] to put on a positive face and to raise the bar of my demeanor and attitude just a notch or two, no matter how poorly I may be feeling. This has been a characteristic of my behavior for as long as I can remember.
As any one with fibromyalgia knows, most of our symptoms are for the most part invisible to others. I'm not sure that this performance of acting in the presence of others serves those of us who have fibromyalgia very well. It is hard enough for others, when they see us, to understand how we are feeling both physically and emotionally; then we act with our learned skills trying to either knowingly or not knowingly raise the bar a notch or two on the invisibleness that disguises our symptoms.
Please don't get me wrong. I do not think that I or any other persons with a chronic illness such as fibromyalgia are in the habit of soliciting sympathy from others, nor do we want to. I do think though, that a good dose of consideration and understanding on how this illness affects our lives and relationships is in order! This would go a long way in dealing with the stigma and ignorance of this illness and in increasing the sufferer's optimism and self-esteem. The invisibleness of our symptoms sometimes makes this very difficult.
Do any of you, my friends, react similarly [when in the presence of others] as I do?
Well, it has been another frustrating past month for me. I cannot say that I have made any progress in a turning around of my seeming decline in how I feel in the past month or so. Yes, fibromyalgia does wax and wane, but this period has seemed to last longer than I usually experience.
It seems that the CPAP treatment for sleep apnea has been less and less effective in making any difference in how I feel. There has been an increase once again, in my tendency to nod-off at the wheel when driving to work in the morning.
Pain and fatigue has been a constant and by the end of the week I cannot begin to describe to you how poorly I feel. Most weekends do not seem to give enough time to re-coup my energy and stamina in order to properly attempt to face the new week ahead. Any projects I deal with, such as my Web site work and more seem to take more of an effort and longer to complete then ever before.
I think my memory or lack there of, whether under the influence of fibro fog or worse, is also becoming increasingly a problem. Once this past week, I was even late for work, by my forgetting that it was my scheduledday to work. I have never had that happen before.
The people in the know talk about how fibromyalgia sufferers often mourn their lost previous lives. Add on the fact that my memory failures incline me to feel that I am forgetting parts of my life; I can understand why I have so concerned myself with this and have allowed this problem to get the best of me, emotionally.
How many of you have had similar experiences and reactions? How have you dealt with them?
I must be honest with you. There are some days that those who try to encourage their fellow sufferers, themselves need to be encouraged. I am at a time such as that right now.
As I already have mentioned, I have been feeling poorly and experiencing an extended flare of late. The normal routine and work schedule that I have become accustomed to has become more difficult. I continue to live dangerously having spells of nodding off at the wheel while driving to work in the morning.
As a matter of fact, this coming Tuesday, Nancy and I have anappointment to see my doctor and discuss the pro's and con's about possibly seeking disability as opposed to keep up my regular employment. Doing this goes against my manly pride; it goes against my work ethic and belief system. Yet, my health is at such a low point, I may have no choice if I want to continue to contribute to the financial well being of my family and not be the burden on them that I envision I would be if cannot work and have no income coming in at all.
Thinking about all this is mind boggling at times.
Please try to keep your chin up over this coming month, and as always, I hope for the best for every one of you.
APRIL 2005
It was fantastic having my sister Cathy to come visit with us for one whole week last month. We were able to relax and spend some quality time as I was able to arrange to be on vacation from my work during that same week.We were able to share updates on each member of our immediately families. We also were able to share experiences, and our successes and failures in dealing with the symptoms of fibromyalgia. I am sure you are aware of it by now [if you have read any of my past posts in the Fibro Log or elsewhere on the "Managing My Fibromyalgia" Web site] that Cathy has also been diagnosed with having fibromyalgia syndrome. We are not medical experts, but it seems as if her symptoms are running about four [4] years behind mine in intensity and effect.
As far as the theory about the propensity for fibromyalgia to run in families, our family tends to support this theory. Not only have my sister and I been diagnosed with fibromyalgia, so has Cathy's daughter and my niece, Erin and my cousin Eugene. We are all linked genetically.
As I mentioned in last month's post, both Cathy and I seem to share a disorder that is known to be past on genetically. The disorder is lymph edema. Because the disorder has shown up with both of us in latter life, it is better described as lymph edema tarda. We are mainly affected by this in both lower legs, allowing the swelling to lead to cellulitis and major skin discoloration, and in my case, bouts of severe infection in the leg's soft tissue.
Cathy has been seeing a therapist who does lymph massage [manual lymph drainage] at a hospital near where she lives in Florida. She says she has felt a difference from the lymph massage and the special wraps she wears around her legs at night at bedtime. This full regiment may work for her, but I am skeptical as to whether the lymph massage as she has described it to me, would do any good for me. I have already been wearing a compression hose for some time to contain the swelling in my legs. I will have to think about the massage portion some more.
Needless to say, my week with Cathy went by too darn fast. Before I knew it, the day had come for me to drive Cathy to Dulles International Airport so that she could catch her flight with Independence Airlines, back home to Florida.
Fibromyalgia has made traveling long distances by car, plane or train very difficult for me. It is very uncomfortable, if not down right painful, to sit for long periods of time traveling. This problem has definitely created a block to my seeing my many family members and friends that live a long distance from my home in Stafford, Virginia. The thought of this problem has brought me much sadness and despair.
Have any of you been dealt a similar hand in cards? How have you handled it? Are there any tips or suggestions that you can make that might help me or others facing similar problems with this aspect and effect of fibromyalgia symptoms? Please use the comment/suggestion box at the bottom of this Web page to forward any information you can that you think may be of some help. I and others, thank you in advance.
Here in Virginia, it has quickly changed from the winter season to the spring and I plan to make sure that I spend more time out doors before the real hot and muggy season arrives. Before you know it, I and many others will be spending time going from one air conditioned place to another trying to avoid aggravating our fibromyalgia symptoms with the heat and humidity of summer.
Thank you for taking the time to read this month's post. Until next post my friends, keep the ol' chin up!
March 2005 Well,March has finally arrived. It is already the 7th.This morning I picked up my sister, Cathy, from Dulles International Airport after her arrival on IndependenceAir. She has come to stay with our family this week, and I have managed to take thisweek off for vacation.
Hello everyone! I hope as many of you as possible have managed to keep the ol' chin up. I, for one, definitely know that it is much easier said than done. Every time another month passes, I wonder how it is possible to encourage others, especially due to the way I have been feeling most of the time. Of late, it has become a struggle to get my thoughts together and get them written down in order to make this month's post on the Web site.
My fatigue has been strong and my employment has been grueling, trying to keep up with the work load. I have had to work more hours than is good for my wellbeing. I know this to be a fact, due to how I feel at the end of the day, or how I feel the first day off after my work week. It has been hard, in my none working hours, to balance spending important time with my family and working on the Managing My Fibromyalgia© Web site, and several others.
These facts have become a bone of contention between Nancy and I, as she is always reminding me I need to be spending more time with my family and less time working on the computer.
It is so very hard to maintain a balance and keep everyone happy. Although I have threatened Nancy that I will have to give up my Web site endeavors to keep peacein my marriage, I know I really could not come to the point of doing so, basedon the positive feedback we receive from our readers and the information wereceive on how the Web site has had a positive affect on many.
I have many things to discuss with my sister Cathy related to our fibromyalgia. We both share similar problems with lymph edema. There is a good chance that it is hereditary. The actual term used is lymph edema tarda, as it seems to make its appearance sometime between the ages of 35 and 50. I definitely will share with my readers at a later date anything of interest that comes out of our talks.
I have noticed on the ManagingMy Fibromyalgia Forum©and elsewhere, what appears to be information about certain supplements and/orregimens that report clearing up fibromyalgia symptoms. I am thankful if certain regimens have helped some people, if in fact they have. I just wish that therewere not so many that so often make them sound like a cure-all for us with fibromyalgia. I am not 100% sure about our readers, but I know as a fact that I have looked into, tried, and spent some serious money on many of these so called curesto my fibromyalgia and its symptoms. For many of us, our resources are limitedand just one more claim that does not come true, can be the straw that breaks the camel's back.
How disheartening and disappointing is it to get our hopes up, only to have them dashed in the end. I am not telling anyone not to try these various "cures" [They should be discussed before hand with a qualified medical professional]; that is something the fibromyalgia sufferer must decide. Please do not get your hopes up too high based on written, verbal promises or so called success stories. If you do get positive results, give Glory to God and be thankful. If you do not see any positive results or find out the advertising was false, you willnot be as discouraged, if you did not have your hopes up too high to begin with.
I hope you do not feel that this opinion of mine on this matter is too negative. I do try to maintain an air of positiveness in all my writing and on the Web site. I just do not want to see too many of us fibromyalgia sufferers more disappointed then is necessary, after having their hopes shot down. We suffer more than our share of disappointments in just having to deal with the symptoms and circumstances of fibromyalgia.
Doyou share my opinion about the hyped cures and promises or do you have a differentopinion? Please feel free to share your thoughts and ideas with us or on theforum.
Meanwhile,...... keep the ol' chin up dear friends.
February 2005 I cannot believe it is February already! Where does the time go? We have been very lucky in this part of the country [knock wood]. The weather has been milder than normal, and we have not had to contend with much of the frozen precipitation. This has been a blessing in disguise for me [an old winter weather fanatic from way back]. My fibro possessed body does not handle the extremes in temperature and icy conditions [that cause slipping and sliding and body contortions] very well anymore.
I am thankful that there seems to be an increase of activity on the Forum. It means that we are exchanging views, ideas, and experiences with one another. Hopefully all the participants and readers will walk away with a nugget or two that can help them in their walk with the adversary, fibromyalgia. Once again, I recommend that you check the Managing My Fibromyalgia Forum© out, if you have not yet had the opportunity to do so.
I am looking forward to the second week in March. My sister Cathy will coming up from Florida to spend some time with my family and see our newest grandchild, Jeremy Brian and of course, Joey. As I have mentioned elsewhere on this sight, my sister is also fighting symptoms of fibromyalgia. I have arranged to take some delayed and much needed vacation time from my work that week to be able to spend as much time with my sister as I can.
Cathy has recently seen and consulted with some medical professionals and will receive therapy for lymph edema. She, like me, suffers with edema in the lower legs, but what is more interesting to me is that the therapist had discussed the other physical trait we share...rounded bellies, and how it can be a form of inherited lymph edema.
I must admit, I do resemble the body structure of my Dad as he got on in years. I grew up referring to this physical characteristic as the "Burns" belly; the Burns being the family name of one branch of my ancestors. I will get more information from Cathy when she comes to visit. Part of her therapy has to do with special bandage wraps. I must admit that I have not found a whole lot of information on the Internet about this type of lymph edema as she has described it to me. I am curious and looking forward to my sister's visit here, so that I may get more firsthand information about this inherited trait and disorder. Can any of our readers share with us any thing they know of inherited lymph edema and its effect on the stomach area of the torso?
Nothing has changed too much in how I am feeling. It is pretty much the same as I discussed last month.
I have been receiving many emails requesting link exchanges with our Web site. To the un-initiated, quality in bound links are used to increase the popularity of one's web site in some search engine algorithms. The higher a Web site scores in a search engine the more readers are apt to find it. I had made the decision a while ago, not to exchange links just for the sake of it. I will only link back to a Web site if:
The web site offers something of interest to our readers on subjects related to living with fibromyalgia and other chronic pain illnesses.
The content is not of an adult nature or offers gambling.
That any product they might advertise or sell has been sampled by my me or someone I know, and is proven to help the fibromyalgia condition and lifestyle.
The site sincerely appears to want to help others with fibromyalgia and is not just using it as a niche subject to achieve some other self serving objectives.
Well, February is a short month, so I do not want to over do this month's post. I have to go and practice what I preach and put some time in practicing "keeping my ol chin up".
Until next time, we love everyone of you,
Bill
January 2005 Welcome to the New Year everyone! We survived another 365 and1/4 days and are still around to talk about it; to share our failures and successes with our fellow fibro-mites and friends. It has been on my mind to define, once again, what this Fibro Log is and is not about. This is especially so for any new people who are just getting familiar with this Web site. It will also be for my benefit, so that I do not lose sight of the reasons I created the Fibro Log in the first place.
What the Fibro Log is:
~The Fibro Log is a diary about the author's walk with fibromyalgia and his daily and monthlyfeelings and emotions.
~It is a description of how the author is being treated for the symptoms of fibromyalgia.
~It is a description on how the author, due to having symptoms of fibromyalgia,inter-reacts with family, friends and co-workers.
~It is an opportunity for the author to discuss his feelings about the medical professionin general.
~It is an opportunity to share with fibro-mites and others as to [for the author] whatworked and what did not work, in helping to relieve the symptoms of fibromyalgia.
~It should be an honest interpretation of the authors true and actual feelings, and notdescriptions that are sugar coated or made to appear better than they actually are. To do otherwise would be to only fool myself as I attempt to fool others.
What the Fibro Log is not:
~It is not a vehicle to advertise any one protocol or treatment over any other.
~It is not meant to entertain but inform.
~It is not an instrument for commercial advertising.
~It is not a tool to applaud or condemn any one individual or organization.
As mentioned in my last post, I continue to feel poorly and at a consistent level. Although increasingly harder, I managed to get through each day of work, taking it a day at a time.
I am still fearful of driving, especially to work in the early morning. I continue to have spells of dozing at the wheel while driving and have had some more close calls. I do not know the answer for this as I do not want to stop working due to the traveling. Any alternatives do not seem to be viable without it affecting our families income and financial survival.
My doctor who is treating the bulk of my symptoms, has told me recently, that he may soon be retiring. Thinking about it upsets me. I do not know of another doctor that has been as flexible as he has in trying different medicines and protocols. He has not been afraid to prescribe more powerful pain meds if he thought they may help.
Receiving e-mail with comments and suggestions is looked forward to. I recently received and replied to an e-mail from a fellow sufferer who lives nearby and has been despairing about their walk with FMS. I think that the person thought I had all the answers to problems related to fibromyalgia, based on the tone of their e-mail to me. I hope they were not disappointed in my reply to them. I have not heard anything more from this person. I pray that this party is okay, as their e-mail seemed a bit desperate tome.!
You can ask my wife, Nancy. My short term memory continues to be a problem, although as she puts it, in her mind, it is a problem with both my short term and long term memory that frustrates her.
I remorse about not seeing any of our friends and relatives that live a distance away from Stafford, Virginia. It continues to become an increasing problem with my ability to stand up to long distance traveling, either by car or plane. Due to this, I have missed opportunities to travel away from home as most people canand do.
Just this coming weekend, my wife Nancy and my daughter Rachel are taking a short trip time wise to Escondido [Near San Diego] California to see Nancy's cousin Bob Ross and his family. This is a trip I would have liked to make, but for reasons mentioned, cannot. Rachel is going in my place. At least, I will not be home alone, as I will have my son [Gregg] and his wife [Krissy] and my two [2] grand children [Joey and Jeremy] with me.
It continues to be a problem for me to get all the things I need done in a days time. Everything seems to suffer for it including my attention to and development of this Web site. There are so many more things I had planned to have developed and up and running by now, to be a positive factor for those who suffer from fibromyalgia and related disorders. I have had to keep them on the back burner until time and resources allow.
Please keep me in your prayers, especially at this time.
I promise to remember to keep my "ol' chin up", if you will do the same with yours.
Bill
December 2004 First, I would like to wish for everyone the happiest and healthiest of holidays and may we all experience a positive turn around this New Year.
During the month of December I survived another year, and succumbed to another birthday.
When I look into my soul for answers, I realize that, for the most part, I have a tendency to hide my true feelings and in public, tending to show only a happy face. My outer-self always wants to put a positive spin on my situation and extol on my readers, friends, co-workers and the like, the benefits of keeping the ol' chin up.
Do any of you react similar to the way I do as I have described in the previous paragraph?
I have been able to drop the veil with my family though, at some points more than at other times. At first, this open attitude was welcomed, but of late, there seems to have been an attitude change. I sense this more with my wife Nancy, than any other. She has begun to have less patience in dealing with my condition. She gets extremely frustrated when having to deal with my fibrofog and memory lapses. Why now, and why Nancy?
Ever since she was declared free of cancer, she has gained a lot of energy and drive. She regained what she lost, and plus more. Although, I am extremely thankful that we have pulled through the crisis of her cancer surgeries and treatments, I feel that she is pushing her self too much and the stress is starting to affect her thought processes.
She commutes daily by car from Stafford to Alexandria, and puts in a good week's work, many times bringing more work home with her. She goes to “Curves” several times a week after leaving work. Nancy also has her time taken up [gladly] in watching and caring for our grand children, [Jeremy Brian, our third grand child, and second grand son arrived just a couple of weeks ago] studying her material for her extended learning class from NOVA, and doing the grocery shopping and the like. Naturally, all this leaves her little spare time to relax or have time to pursue recreation….
I believe that I just answered my own question. Yee gads! If I ever kept up a pace again as she has, I myself, maybe would be stressed out and frustrated just the same!
I am still struggling myself. I am getting by at my employment, with the average work week comprising on average 43 hours per week; then having to ad a 35 to 55 minute commute each way. I had discussed previously in my fibro log my having problems [especially during my morning drive] of nodding off while I am driving. Although improved [still using the CPAP nightly], the problem continues and is scaring me to death.
Most days, I still cannot find enough time to properly respond to my emails related to this Web site, do a proper amount of research, and develop new and meaningful content. [No, I am not giving up yet] I find it near impossible to fit everything I need [or would like] to do in a 24 hour period, and still get the proper amount and quality of sleep and rest my body and soul so desperately needs. Wow! No wonder my symptoms have been flaring up of late.
Where can I cut? I need and want to keep regularly employed as long as I can, due to the financial needs of the family and household. Besides, having this job is a matter of pride too! There are many days I say to myself at work, “what am I doing? I cannot go on another hour; I need to go home and rest. The pain and fatigue are too much!” In the end so far, I have been able to push my self to finish the day, and drive this wretched body home. It is no consolation to know that many of you out there know exactly what I have been feeling.
Well everybody, thank you for allowing me to vent! Maybe someday, someone will find an answer to this monkey [fibromyalgia] we all carry on our backs, Web sites such as this one will not be needed, and there will be no need to vent our feelings.
At any rate my friends, keep that ol’ chin up, and may God Bless you all.
N ovember – October 2004 I am sorry about the delay in making this post. I have finally been able to put my thoughts down in print for the first time in several weeks. I was either experiencing too much anguish from fatigue and pain, or running short of time due to family obligations that I value highly. This is even though some of my own family may question my highly valuing family obligations, when my passion for helping others with fibromyalgia and CFS through my Web site consumes quite a bit of time. I have been wearing my mask and using the CPAP machine steadily. I did have to have the mask replaced once when the sealing material developed an unusual split in it where it touches the bridge of my nose. Robert, from the Pat Grimes Medical Supply Company was so very kind to replace the mask no questions asked. I was quite surprised when I removed the packaging for the replacement mask. The mask that Robert gave me as a replacement, even though it was the same brand, differed slightly in its construction. I had planned to call Robert the next day about the perceived problem, but I found this mask to make a better fit on me than the mask it replaced. I ended up not calling Robert at all about the perceived mix up. Even though I have been wearing the CPAP mask steadily every night and taking my various medications as described, I have only received a slight benefit from the CPAP, and not the tremendous relief that many with sleep apnea receive. Is this because the sleep apnea is only contributing to my symptoms and not the cause of my symptoms, or are there other reasons for my experience with this aspect of treatment? Will I ever know, or will any body ever know? I am afraid this is the road that many of us fibromyalgia sufferers are forced to travel. Please take the time to let me know your experience as it pertains to using CPAP to treat diagnosed sleep apnea and how it helped [or did not help] your fibromyalgia symptoms. You may contact me by using the form provided at the bottom of this Web page, or better yet, write about you experience on the Managing My Fibromyalgia Forum found on our Web site. I also started taking medication during this same period to relieve the swelling in my lower legs from fluid build up [edema]. This swelling has been a problem for quite along time and has been addressed several times in this Fibro-log. Although it is an inconvenience to have to urinate so frequently [especially when first taking the medication], it has made a great difference in how my legs feel. They do not feel as cumbersome and heavy. I can also fit into all my shoes without a problem. There is one negative thing that has occurred during this same period. I am note sure if it is related to my taking the fluid pill Furosemide [generic for Lasix] 40mg once every day, but I have been experiencing severe lower back pain. It usually starts about a half an hour after I get out of bed in the morning and continues until midday when at last my couple of pain medications can finally get a handle on it. I have mentioned the pain to my doctor, and may be I did not describe it properly, but he did not seem too alarmed by it, basically writing it off as part of my fibromyalgia. The pain is a crushing pain in my lower back. If feels more internal than external. It feels like something is pushing down on it, trying to force it lower into my body. The pain does sometimes get down to my buttocks. I know what a pulled back muscle feels like and this is not the same. It is closer to the lower back pain I experience several years ago prior to being brought to the hospital fearing I was having a heart attach, but turning out that I lost a life-threatening amount of blood volume due to blood loss from hemorrhoids. When I get this lower back pain, it is so strong that it helps me to forget my other aches and pains. Lying flat on my back is the only way to get relief besides taking my pain medicines. When I am at my job in the morning, my ability to concentrate and pay attention to my work is affected by this severe pain. My recent spell’s affect on me and how I am able to function at work, has once again brought about the conversations between my wife Nancy and me, about looking into full time disability again, even though it is a subject I have fought not to discuss. I have not considered the use of this as an option for myself these many years. Well, that is about enough about me for a while. Let us hear from you either by completing the form at the bottom of this page, or better yet, through your comments and participations on the Managing My Fibromyalgia Forum on our Website. Until next time, keep that ol’ chin up! September 2004
My doctor explained to me the my oxygen saturation level during my sleep at the time of my cessation of breathing was hitting the 83% figure. This is definitely not good for my body and physical condition.
The doctor could not tell me exactly the ramifications of the long term effects of these low oxygen saturation levels were or could have on my organs or bio-chemistry.
I had nothing to lose and everything to gain by once again attempting to find a mask for my CPAP machine, that I could use successfully, and not have so many problems with the fit as to discourage me once again from steady use of the CPAP. The doctor said he would definitely work with me and leave no stone unturned [I appreciated this attitude on the part of the doctor].
As luck would have it I ended up taking my script for my CPAP mask to the "Pat Grimes Medical Supply Company" in Fredericksburg, Virginia. There I was teamed up with Robert, who I found to be concerned, knowledgeable and patient. He took the necessary time to ask questions, listen and explain many aspects of the treatment with the CPAP. We tried several configurations and brands of masks until we found one that made the best fit, with the fewest problems of leakage, and the most comfortable to wear. He assured me I could call him at any time if I had any problems at all with my equipment and we would look into any adjustments or alternatives.
I can say that I left the Medical Supply Store filled with confidence that my problem of miss-fitting equipment and lack of responsive concerned medical supply professionals was behind me. I could now look forward to the benefits that the CPAP therapy should afford me.
I did feel a difference after my first several days on the CPAP. I felt some stamina return to my legs and a bit of pep to my steps. Unfortunately it was not near as much as I had anticipated or imagined. I have to keep telling myself it was too soon to pass judgment as to the results and I intend to continue with the CPAP treatment and reserve judgment. I will keep you up to date on progress.
I used to look forward to weekends...... Lately though the first day of the weekend is spent recuperating via cat naps and the like from the previous five days, naturally leaving me feeling cheated of my time with my family, etc. It never gets easier allaying my guilt feelings, even though circumstances are not as a result of the choices I have made. I guess this sounds familiar to many of you.
Until next post, keep the ol' chin up.
August 2004 Welcome to all our regular readers and guests to our Fibro-log.
As a refresher, this log is a mainly a monthly history of events and thoughts pertaining to my life as it revolves around living with the symptoms of fibromyalgia, and other similar chronic pain and fatigue illnesses. Included at times also are quips, comments and observations about family, friends and my life in general.
I have nothing new to report as to my sleep study and its findings as to the intensity of any sleep apnea. This test was done on August 7th, last Saturday night. The results are not generally available to the requesting physician from the sleep lab for about two [2] weeks time. One good thing that happened was that the mask that I used for the test was comfortable and did not cause any major problems or obstacles in using the CPAP machine. As per the lab technician, the lab will be recommending this particular mask and configuration to my doctor in their report. I will keep you informed about this matter on my next post.
I am mad....mad at myself for not doing with myself this time, what I have recommended many times to fellow sufferers.
Several weeks ago I had a flash of brilliance [at least I thought it was] about a subject to base my next [August 2004] Fibro-log post about. I had even mentioned to my wife about the revelation ,but not the details. She urged me in the middle of the night [for that was when I told her] to write it down so I would not forget it.
Well....you guessed right and I did not, write it down that is. As sure as shoot 'in I had lost the thought and it's details. I have spent the rest of the time until this very moment trying to revive the idea that had come to mind to absolutely no avail. The idea and thought I had at the time had seemed so strong and so clear that I thought there was no way I would let it slip my mind.
The next time I had better practice following my own suggestions and not forget the lessons I have learned living with chronic illness for may years.
"In the end, our lives are but the sum of our decisions. We are the directors of our fate by the decisions we make. We have the power to choose." Mr. Merokee © 2004.
I have been having a real hard time due to my increase in pain and fatigue [even with practicing mine and others many tips and recommendations] in finding the time and energy to keeping up my "regular" employment, my Web site and work on the behalf of my fellow fibromyalgia sufferers, and my other Web endeavors such as Merokee Dot Com. I intend to do the latter as long as I possibly can, but I must concern myself mostly with the first to "help put food on the table." My work on the Internet has been done out my love of the technical format and my concern for others, but has in no way put "food on the table." Quite the contrary, it is slowly becoming an increasing financial burden.
I hope and pray that all these concerns will work themselves out successfully and that we may continue on with our work, Lord willing. I will have to continue keeping the old chin up!
July 2004Well, another Independence Day has come and gone, fireworks and all. Giving it some thought, I guess there are different types and degrees of independence.
Those of us, who suffer from illnesses such as fibromyalgia and other chronic diseases, generally suffer a loss of independence because of the symptoms we experience.
Ask the husband or wife who previously helped support the household financially, if they lost or gained independence once forced by their symptoms to stop working or to change their line of work and compensation to fit their new limitations.
Ask the student who now has trouble keeping up his or her studies and is considering delaying their higher education due to their symptoms, if he or she feels more or less independent.
Ask the homeowner who took pride in his or her property and landscape that now can barely muster the energy and stamina to spend a small amount of time outdoors and ends up depending on others, both hired, and volunteer, to help, if he or she feels more or less independent.
I guess you get the picture. Fibromyalgia and other similar chronic illnesses do diminish our independence and in doing so, negatively effect our other qualities of life.
Think of the qualities of confidence, economics and standard of living, friendship, of earning and receiving respect, of the ability to afford proper medical care, etc. and how they diminish along with our independence.
How independent are you this Independence Day as compared to previous Fourth of July Holidays? Think how you might answer the questioned based on your own personal fibromyalgia experience.
Well my friends, there is not too much new to report on from my neighborhood. I have an appointment to see a new doctor tomorrow afternoon after work. My wife, Nancy, has pushed me to make this appointment.
I have not been using my CPAP machine to control my sleep apnea for quite some time now. If you recall from my previous posts, after many trials and errors in trying to find the right combinations of mask and connecting apparatus, I literally gave up in frustration when it seemed hopeless to find an answer.
Dr. Pare who I am about to see has treated Stan from my office successfully for his sleep apnea and I am hoping that Dr. Pare will also come up with a configuration of the equipment that will be suitable for me to use. I will let you know how it went in an upcoming post on this Fibro-log.
There is no doubt in my mind based upon Nancy’s description of my sleep patterns and actions at night, that using a proper working CPAP and mask configuration will only help with my fatigue and tendencies to fall a sleep at the computer or while I am driving to and from work. [Not good, I know!]
I hope everyone will take advantage of our forum when possible. I am happy to see that Crazee8 is feeling better, and has resolved some hardware problems and is back participating on the forum as her time allows.
Please do not forget to pass along to me any ideas, suggestions or materials for the Web site. I may be the Webmaster, but I feel that the Web site itself belongs to all of us dealing with fibromyalgia and chronic pain and fatigue disorders.
Until the next post, keep the old chin up!
June 2004 I was doing research on line when I came across an article which appeared in the New Yorker magazine in November 2000. At that time, this article stirred up quite a bit of controversy and objections by many Fibromyalgia Organizations. I'm not sure, but some of the things I want to comment on this month may be controversial to some.
I remember how much relief I felt when a name was given to the syndrome of the symptoms I had to deal with all those many years....fibromyalgia.
The many years of self-doubt, internal debate, inner turmoil, and going over the possible explanations with the eye of common sense; wondering whether the chronic pain and fatigue I was suffering from was just a figment of my imagination or were real, finally could be put aside by having some professional recognition and a medical name.
I myself, as a long-term sufferer of what is termed fibromyalgia, and have often wondered how there could be no disease, when so many who suffer the symptoms are in so much pain.
That was then, and this is now. Is it possible that the medical profession, in some cases, is now also too quick to diagnose someone's reported symptoms as being fibromyalgia?
In the article written four [4] years ago by a Dr. Jerome Groopman for the New Yorker Magazine, he writes as summarized, "In 1990, the term "fibromyalgia" formally entered the medical lexicon. Now, ten years later, nearly six million Americans are said to be suffering from fibromyalgia-more than four times as many as will develop cancer this year, and six times as many as are living with HIV. Ninety per cent of the afflicted are women, and the majority is Caucasian." Yet virtually every aspect of this condition, down to its very name, is contested in the medical community.
There was no common agreement about fibromyalgia when the article was written. At best many medical professionals seem to agree to disagree, or remain out of the dispute altogether.
Yes, today, there is still the naysayer, like a Dr. Arthur Barsky and a Dr. Bohr, who contend that the bundle of fibromyalgia symptoms origin is in the mind and not in the peripheral nerves and areas of the human body and that, even honoring fibromyalgia symptoms with a medical label may be making people sicker than to cure them. Please note that these doctors did not say the symptoms are not real, but that their source is in dispute.
A most unlikely opponent of the fibromyalgia diagnosis is Dr. Frederick Wolfe, one of the very men who helped bring the term into being. Although, according to the aforementioned article in The New Yorker, Dr. Wolfe also said, "I do believe there are some people who hurt all over and have no psychiatric disorder."
The article goes on to imply that the amount of people receiving Social Security disability has increased from less than 25 percent to over 46 percent once the American College of Rheumatology criteria for fibromyalgia was introduced. It is felt that many lawyers and patients will latch on to fibromyalgia because it is a very convenient diagnosis for lawyers to use in arguing for disability, since it is essentially self-reported.
According to the article by Dr.