Fibro-log for 2006 - 2009 The Author's On Going Fibromyalgia Journal Entries
January 2009
I admit, some time has lapsed since my last post, and I apologize wholeheartedly. The article I've written below explains what has been going on in Nancy's and my life. Hopefully after reading this article you might understand why my time and my limited attention [not my heart] has been primarily elsewhere other than the "Managing My Fibromyalgia" Web site and "MMF Forum".
Nancy and I hope that all our readers and freinds have had a great holiday and we hope and pray for a better and blessed New Year to all.
My Wife, My Hero
by Bill Wallmuller
Nancy, my wife and my hero, and I will celebrate our 40th wedding anniversary this September 25. It has only been over the last 10 years that I have come to appreciate and admire her heroic qualities brought to fruition through tremendous personal adversity.
Many know me as the author of the Managing My Fibromyalgia Website and Forum in which I describe my life dealing with the affects for more than 30 years of what is now termed fibromyalgia. Although my life has been challenging and I am now permanently disabled due to this chronic pain and fatigue disorder, what I have had to face with my illness pales in comparison to what Nancy has dealt with successfully over the past 10 years.
It was in 1999 that Nancy first heard she was diagnosed with the dreaded big "C". It was colon and pancreatic cancers, to be exact. She was initially devastated. This was something she feared since 1973 when she found out she had a condition called familial polyposis. Until that point, Nancy thought her rectal bleeding was due to hemorrhoids as her doctors had told her while she was in her teens. She had thousands of polyps in her colon, too many to be removed by burning out.
[Familial polyposis or familial adenomatous polyposis (FAP) is a premalignant disease. This means that a person with FAP, if left untreated, will invariably develop cancer. Individuals with this disorder grow hundreds of polyps throughout their large intestines. The polyps, also called adenomas, commonly develop just after puberty. Approximately half of all FAP patients will have polyps by age 14. Ninety percent will have detectable polyps by age 25. Usually by age 35-40, one or more of these polyps will become cancerous.]*
[FAP is a rare disease. One in 8,000 people in the United States have FAP. However, it may be very common in affected families. FAP is inherited in an autosomal dominant pattern. This means that a person with FAP has a 50% chance of passing the condition down to each of their children. [Our son Gregg inherited this abnormal gene and had his colon removed by the time he was 22]. FAP can also develop in someone with no family history of the disorder, due to a new genetic mutation in that individual. It is thought that approximately one percent of all colorectal cancers in the United States can be attributed to FAP.]*
Nancy had surgery back in 1973 to remove her colon and the doctors created what they term a "J-pouch" out of her intestine to replace her colon to restore normal bowl movements. She would have to be monitored for the rest of her life and have any new polyps that developed removed while in a precancerous state. This treatment worked for many years, but during the 90's, Nancy became remiss on going for her checkups, even after my protests that she not neglect her checkups. She was uncomfortable with the doctors she met in Virginia where we then lived. This is what undoubtedly led to her developing colon and pancreatic cancer in 1999.
Nancy's feeling of devastation lasted until she met her new doctors at the Sloan Kettering Memorial Cancer Hospital in New York City. After talking to the doctors and meeting other patients with the same condition, her feelings of devastation became one of hope and steadfastness in the face of cancer, an attitude she has strongly maintained until the present.
Since 1999, Nancy was treated and had surgery and several related procedures for colon, pancreatic, and lung cancer. Through it all, she has been declared cancer free.
The past two years, polyps where found developing in Nancy's stomach. They were removed, tested, and found to be showing only mild dysplasia. At the time, it was thought that they could be controlled this way, which was until the polyps became more and more numerous.
After several consultations and much consideration on Nancy's part, in order to prevent any cancer of her stomach developing to threaten her life, she opted for a total gastrectomy [surgical removal of the stomach and the connecting of her intestine directly to her esophagus] on Oct 7, 2008. This radical surgery would extend her life and assure that the polyps in her stomach would not turn to cancer. Her surgeon told us that she should expect to be in the hospital for 5 to 10 day, possibly a week, after having her surgery.
As things turned out, this was not the case. From Oct 7, 2008 till when she returned home December 9, 2008, she spent a total of 8.5 weeks in the hospital with only a couple of short stays at her sister's home in New Jersey. There were complications of leaks in her new digestive tract due to slow healing and abscesses filled with fluid in her torso and related infections. In fact, Nancy returned home to Virginia with two drains still in place.
The doctors in New York City gave us the name of a surgeon in Winter Park Florida, Dr. Timothy Childers, who was going to follow up on her case. We moved from Virginia to Chuluota Florida to live at my sister's home on December 13, 2008. We had to give up our apartment in Lorton, Virginia due to financial reasons and going to stay at my sister's home in Florida would give us extra hands to help in Nancy's recovery.
Within several days of seeing Dr. Childers for the first time and before having her drain apparatus removed, Nancy ended up once again in the hospital [Florida Hospital Orlando South] for another week. She had developed fever and it was determined to be an on going infection from a previously undetected abscess filling with fluid. She finally left the hospital on December 27, 2008.
It is now January 6, 2009 and we are thanking God that Nancy is making slow but steady progress [some days better with occasional set backs] in achieving some sort of normalcy. She will never be able to eat the same way as before, but many times a day in much smaller portions and will probably need supplements to reach the goal of 2000 calories a day.
This last surgery turned out to be the hardest on Nancy that I have witnessed. It really took a toll on her emotions and determination, but I know in my heart that her steadfast resolve to live will make the difference again and she will continue to be cancer free.
Nancy's surviving cancer has come at a financial cost. Even with her good insurance coverage from her employer, we have been financially devastated over these past 10 years. We gave up our home in Stafford Virginia in 2005, used up my entire 401k plan from my once employer, over extended my credit on my main credit card to pay medical bills and are at a point of considering declaring bankruptcy [although it goes against everything I believe in]. We now realize we may never get to travel during our retirement as we had planned, nor have a place of our own nor live our remaining years together without tremendous financial stress and pressure.
I am not complaining though. We look to God for comfort with thanksgiving. Even if I knew then what I know now, I would, without hesitation do it all over again and ask Nancy to be my wife.
After nearly 40 years of marriage, I love and cherish my hero wife even more than before. I, Bill Wallmuller, would truly be lost in this world without her.
*Gale Encyclopedia of Medicine, Published December 2002 by the Gale Group. The Essay Author is Ellen S. Weber, MSN.
June 2008
This program I came across on the Net features a series of pain case conferences in which physicians present challenging cases to a multidisciplinary pain panel of experts knowledgeable in treating the type of pain each pa...
UCSD CMA Pain Management: Fibromyalgia Part One
Pain Management: Fibromyalgia Part Two
May 2008"Long Time Between Entries"
First, I would like to take a moment and apologize to all our readers for not having posted a reason or explanation for the long absence of posts in the Fibro Log. I do want to thank everyone for their continued input and support for this Web site and "The Managing My Fibromyalgia Forum" during this time. It has been your participation in the forum, your emotional and financial support that has kept the Web site and Forum going.
I have given much thought to reviving regular posts to my Fibro Log and am seriously considering doing so.
The disruption in posts should not come as a surprise to many who suffer from fibromyalgia and related disorders. As I have become older in my years [60 last December 8th] and longer in this pain and fatigue disorder, I have had the disappointment of my symptoms not improving, many times becoming worse. Fibrofog has become a big problem for me and I find it difficult to get my thoughts together and commit them to paper. The physical and mental fatigue of publishing a monthly or bi-monthly blog was becoming over-whelming at times and I thought a short break was in order. In no way did I originally intended to allow so much time to elapse. On top of everything else, I have been diagnosed as having prostate cancer and am undergoing treatment for the same.
This same situation has had me post-pone more times than I care to remember, the publishing of "The Managing My Fibromyalgia Newsletter".
This has been one person's attempt to make a difference, but being a one person run Web site has it's downside. There is no one to fill in when I'm under the weather, their are no development and research committees, administrators, graphics and media departments to pick up the slack. It has been over-whelming at times to say the least.
Meanwhile, remember May 12th, 2008 is "National Fibromyalgia Awareness Day". This day should be used to foster public awareness. Public awareness is important in order for patients to be able to receive understanding, proper diagnosis and treatment and will also help eliminate the myths, improve patient support, and encourage research.
May & June 2007 - Hello everyone. I hope your new summer season has started decently for you. I know that many with fibromyalgia have problems with extremes in weather depending where they live. They either suffer from one or the other or both, the heat and humidity of summer and the cold, wind, ice and snow of winter.
Doing or experiencing anything in the extreme is many times detrimental to the fibromite. Moderation is truly the key in managing fibromyalgia symptoms.
I recently received an email from one of our readers with some new and unique tips [new to me] for managing fibromyalgia symptoms. They are as follows:
"I have found that changing "little" things in as many areas of my life has made a big difference in how I feel".
"The first change I made was my front door knob. Believe it or not, the knob was awkward for me to turn & changing to a different style has allowed me to use my thumbs again with very little pain compared to before".
"I used to have to use my index finger rather than my thumbs to open the doors on my Jeep Cherokee. I sold my Cherokee & bought a car that has handles that open by pulling up on them".
"I recently replaced my top loading washer [a huge source of pain] with a front loading washing machine. It's on a pedestal, so I don't have to bend & I don't have to lift all that heavy laundry straight up anymore. Of course, I bought the dryer to match the washer. I am still looking for a laundromat style basket on wheels to move the laundry from one to the other".
"I have a 5 year old. I only give her piggy back rides down staircases, that way I can easily sit a few steps down & offer her my back. When I get to the bottom, I sit on the bottom step and allow her to get off on her own. Then I have the railing to help pull myself up with. I'm still a "fun" Mom, but I'm not hurting myself terribly to be fun".
"I am right handed, but I have been practicing using my mouse with my left hand. It's cordless, so it's pretty versatile & it helps to alleviate pressure in my wrists when they act up to switch hands. [I work from home on my PC; I have to be able to use my arms]"
"Recently, I have been playing around with the voice recognition program that came with my computer. I don't know if it will make a big difference in how I feel compared to the hassle of learning this program… but, if I find it does, I'll become an expert in using it".
"The last thing seems small, but makes a huge difference in my energy level. I allow myself to take a nap during the day if I need it. Ok. My body actually pretty much demands it. Usually 20 minutes sleep will snap me out of a major energy drain, but if it doesn't it has to be ok for a longer nap – guilt free".
Thank you, Kelly
This month we added a new page to the Managing My Fibromyalgia Website containing summaries and links to recent news headlines and news articles pertaining to fibromyalgia. Please check it out and let me know if you find this addition helpful.
Until next post, everyone keep your "chin up".
April 2007 Spring is supposed to be a time of renewal and life. As the flowers and cherry blossoms bloom and the grass goes from its winter brown coat to vibrant green we are inclined to believe that even our cares and troubles will decline and we can look ahead with new hope.
Well, it's not always the case, especially in my current take and view of my life and future.
My retirement, due to the severity and many symptoms of my fibromyalgia, since last April has not been all its cracked up to be. The process of filing for Social Security Disability and its resulting loss in income, as compared to the salary I had in the working world, has become a burden.
We had our house on the market from April to December before we could find a buyer. The idea was to down size and lower our living expenses [we now rent an apartment]. We were getting desperate near the end to sell. So not to lose our home through foreclosure we ended up selling our home at break-even after the mortgage company and the Realtors [thankfully they were personal friends of ours] worked out a deal to accept the buyer's offer even though it was for an amount less than what we owed on the house.
Over the last eight years or so, we had to use a great portion of the equity that built up on the home and a good amount of my 401k monies, to help us get through my wife Nancy's many surgeries for her bouts with colon, pancreatic and lung cancers and her constant need for expensive supplies to make her life livable.
Although she is currently cancer free, she has an enormous amount of physical problems because of those surgeries and treatments. Even though she has been able to continue to work, it has been very hard on her, and it is looking more and more like her going out on retirement due to her physical health is becoming a reality. I turned 59 this past December and Nancy turned 58.
When this happens as I expect it to, it will increase our financial burden even more to try to make ends meet and take care of our financial obligations. Once Nancy retires, we will lose the great health coverage she had at her work on both of us. We will then be dependent on Social Security, only when we are eligible for it to kick in.
It is somewhat ironic. I have always urged my readers and friends with fibromyalgia to, no matter how bleak things seem to be, to keep the "old chin" up. Now I face each new day wondering how I can possibly keep my own "chin up", when I don't see a light at the end of the tunnel.
Long gone are my dreams of a good retirement, getting to finally travel and do things we could not do when bringing up our two great children [Rachel is getting married this October], running our family and home and keeping our integrity.
Sometimes, I even find it hard to accept the promises of God and Jesus, about the outcome for the believer.
I am thankful that the Licensed Clinical Social Worker [Therapist] and the doctor I have been seeing have been helping me to keep it together and not succumb to my depression. I just don't know how much longer this can continue.
You, my friends and readers are also a reason for concern. I have poured time, money and heart into the Managing My Fibromyalgia website and related forum out of my love and concern for the many sufferers of FM. I have always had the burden to let others know they are not alone in the nightmare of fibromyalgia, as I once felt alone and bewildered, and that there are some things we do for ourselves to lessen its hold on our lives.
The above mentioned burden for the sufferers of fibromyalgia was the genesis of my Web site and Forum.
Now it has become more and more likely that I might not be able to continue this outreach as I had planned, due to Nancy's and my increasing financial hardship. I pray we can eke out the finances to continue. It just doesn't look good.
Do I at times get mad with God and our circumstances? You bet I do! After all, I am human.
I will do my best to keep my "chin up". I just don't know how successful I will be.
February 2007
Sometimes its easy for someone like me, who has been dealing so long with the symptoms of Fibromyalgia, to forget that there are people, who are starting new everyday, dealing with this beast. There are many who have experienced it only for a couple of years. I am always amazed when I come across a "fibro" newbie who gains quickly a knowledgeable insight into this disorder and other chronic illnesses and their effect on the lives of the sufferers.
I have had correspondence with such a person, who happens to be a writer, diagnosed as having Fibromyalgia, in late 2005. This young lady, Kimberley Linstruth-Beckom, has written and is in the process of writing books about her experiences with Fibromyalgia.
She decided that she wasn't going to let that stop her from writing so she published two full length books in 2006, one on poetry and the other on this fairly new syndrome that plagues 3-6 million Americans today. The Fibro Hand, is an intimate look into the author's life with Fibromyalgia and how she has learned to make her hand she was dealt in life be a winning one.
Kimberley's current project is another inspirational book dealing with Fibromyalgia and sexual intimacy with your partner after diagnoses.How does one stay intimate when Fibromyalgia and sex can be a pain in the neck? This new book will explore this topic, as well as, Kimberley's own thoughts on intimacy with Fibro, and how both the sufferer and the non sufferer of this chronic disease can be intimate again after diagnoses.
January 2007Once again I am guilty of letting too much time pass from my last entry in October 2006. I have been procrastinating more than ever with it being increasingly hard for me to keep my concentration level and to put my thoughts together and down into written form. I have continuing problems with my short term memory, to add injury to insult.
My wife and I finally had a buyer for our house in mid-December in our attempt to downsize. The house which we loved became a burden due to maintenance [I am not able anymore to do many of the physical chores that go with maintaining a single family home and it's property]. Besides, it was too much house for Nancy and me alone and Nancy needed to cut down her major commute to Old Town Alexandria to work.
The move was quite stressful due to having to agree to close onDecember 20th, which left us a week and a half to find a new place to live, move our belongings, give away or discard many years accumulation of stuff so we could fit everything in a two bedroom apartment. This stress left me in a lot of physical pain and an emotional wreck.
The medical professionals I see are now suggesting I find a doctor or clinic that can test me for onset dementia due to my memory and concentration problems along with my volatile emotions. It's hard for me to understand how a man of my age has so much of a problem of controlling my emotions. Sometimes the littlest of provocations causes me feelings of remorse and to break down weeping uncontrollably.
I am seeing a different doctor for my pain management now. Myfamily doctor who has been helping me with pain control for many years has gotten caught up in a narcotic audit and can not prescribe any narcotic type medications until the issue is finalized. He's a good man and a very empathetic doctor. I hope this gets cleared up in his favor.
I still do not take any prescribed pain medication other then aprescription for Darvocet with a allowance of use no more than three time a day. This is fine with me, as I do not want to go through the challenge I had over a year ago of coming off strong pain meds that were becoming less and less effective in controlling my chronic pain and fatigue.
Quite frankly, the Darvocet does not work very well in controlling my pain, but I do not want to take anything stronger at this time. I am scheduled to see the pain management doctor on the 26th and will know better at that time what his recommendations will be. After my last visit to him, extensive blood work was done and some pictures taken of my lower spine and pelvic area. He should have the results when I see him.
I hadn't had these tests done in some time, so he wanted to start at a base point by having these tests done on me as a precaution to rule out any abnormalities.
I'll let you know the outcome of my visit in my next entry. At times I have a bad time following my own advice; anyway, keep your chins up.
October 2006 I'm back. I must apologize for allowing so much time to pass since my last post. As I had previously mentioned, I was waiting, not wanting to influence in any way, my process of applying for SSD. If you recall, I finally had to stop my regular work this past April 18 2006 at the age of 58, based on the recommendations of the medical professionals I have been seeing for the last twelve months or so.
Not only that, but it has become increasingly difficult for me to put the words and thoughts together allowing me to properly express my thoughts and feelings.
I have often wondered how anyone who is ill and is having trouble functioning each and everyday, is expected by the Social Security Administration or anyone else, to be able to gather and process all the required paperwork and information needed to process their application for assistance on schedule. I know, based on how I feel, how difficult it would be for me to focus without assistance.
We are not all blessed to have the support and assistance of a friend or loved one as an advocate to help us through the application process. If you do fall into this category, I am here to tell you that you can obtain the services of a professional at a very reasonable cost.
Let me give you some background on them. This is my testimonial to their organization. I receive nothing for this recommendation and testimonial.
Allsup gets what you’re going through. They understand the many challenges which accompany a mental and physical disability. With all the worries and stresses that your condition brings, you can sleep easy knowing that Allsup will take care of getting the Social Security disability you deserve. There 97% success rate is proof of that.
Allsup gets how the system works. Over 20 years of experience has given them the knowledge to successfully streamline and navigate the disability process. The reason for their effectiveness? They specialize in only Social Security disability services.
Allsup gets what you deserve. Whether you've been denied Social Security disability, or you're applying for the first time, they get you what you're entitled to. As the nation’s premier Social Security disability claim services company, they’ve obtained more than $1.2 billion in Social Security and Medicare payments for their tens of thousands of disabled clients.
and here's some more information from the Allsup Inc. Web site.
If you're thinking about taking on the Social Security Administration alone, get ready for a long fight - 60% of all initial claims are denied.
Thousands of disabled individuals who have represented themselves have struggled with confusing forms, busy SSA telephones and months of uncertainty about the status of their claims. Unfortunately, some claimants never live long enough to collect their benefits.
- Allsup's 97 percent award rate far exceeds the national average of those applying without professional representation.
- Allsup's expert staff has accumulated hundreds of years of experience in working and dealing with the Social Security Administration.
- A single point of contact will handle your claim at each level. Allsup will keep you informed of the progress of your claim and expedite your award and Medicare entitlement.
- Allsup Inc.completes all Social Security forms for you by phone and mail. They gather relevant medical records and documents to simplify the application process.
- Allsup's representatives handle only Social Security disability claims, unlike attorneys who typically don't specialize in this field.
- Eight out of every ten of Allsup's awards are obtained without the need to see a judge, which allows the claimant to stay at home.
- Allsup Inc. only charges a fee if your claim is approved. They do not require any up-front charges.
You can visit the Allsup Inc. Web site today and fill out the form and submit it for a free consultation. You have absolutely nothing to lose.
July 2006 Hello everyone. I am sorry that I have left so much time pass from my last posting. It seems as hard as I try to keep up, my lack of focus and concentration kicks in, tremendously putting a hurt on my productivity. I find it quite troubling knowing that this beast [fibromyalgia] has not only taken away my ability to continue in the every day work a day world and not allowed me to keep somewhat physically active, now it even has dampened my ability to be productive at the computer.
I was asked by my medical professional to stop work and retire due to my poor health which I did on April 18, 2006. You would think this would give me a great more free time to work on my Web development projects, which I love doing, but alas, my poor ability to concentrate and focus has not given me any advantage in doing so.
I am still in the process of trying to obtain SSI. The process seems long and tedious, but it is on schedule. As I said before, as soon as I know the out come, I will fill everyone in on the details of how it went and the name of the group that is helping me with the process.
TL:Fibromyalgia Doctor's Assessment Form Original Source Devin Starlanyl devstar@EMPATH.WIN.NET Original Date: December, 1995 Copyright Restrictions: Copyable with attribution
Thisquestionnaire may be used by your doctor to assess your condition andfunctional impairment.
Fibromyalgia Residual Functional Questionnaire [modified from theFibromyalgia Impact Assessment Form developed by Mason,J Silverman,SL Weaver, AL et al, (Arthritis Care Res. 4:523, 1991)]
Please answer the following questions concerning your patient'simpairments:
1. Nature, frequency and length of contact:________________________________________________
2. Does your patient meet the American Rheumatological criteria forFibromyalgia? ____Yes ____No
3. List any other diagnosed impairments:_________________________________________________ _________________________________________________________________________________ _________________________________________________________________________________
5. Have your patient's impairments lasted or can they be expected tolast at least 12 months? ___Yes ___No
6. Identify the clinical findings, laboratory and test results whichshow your patient's medical impairments:________________________________________________________________________________ ________________________________________________________________________________
7. Identify all of your patient's symptoms:
_____Multiple tender points........._____Numbness and tingling
b) Describethe nature, frequency, and severity of your patient's pain:______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________
____Humidity ____Static position _____Allergy ___ Other
___________________________________________________________ 9. Is your patient a malingerer? ___Yes ___No
10. Do emotional factors contribute to the severity of yourpatient'ssymptoms and functional limitations? ___Yes ___No
11. Are your patient's physical impairments plus any emotionalimpairments reasonably consistent with symptoms and functional limitations described in this evaluation? ___Yes ___No
12. How often is your patient's experience of pain sufficiently severeto interfere with attention and concentration?
14. Identify the side effects of any medication which may haveimplications for working, e.g. dizziness, drowsiness, stomach upset, etc:_____________________________________________________________________________ _____________________________________________________________________________
15. As a result of your patient's impairments, estimate your patients'sfunctional limitations if your patient were placed in a competitive work situation:
a) How many city blocks can your patient walk without restor severe pain? ________Comment____________________________________________________________
b) Please circle the hours and/or minutes that yourpatient can continually sit and stand at one time:
Sit.........................Stand/Walk
___............... ___Less than 2 hours
___............... ___About 2 hours
___............... ___About 4 hours
___............... ___ Atleast 6 hours
c) Does your patient need to include periods of walkingduring an 8 hour day? ___Yes ___No _____
d] Cannot work 8 hr day _________Yes ___________No
e) Does your patient need a job which permits shiftingpositions at will from sitting, standing orwalking? ___Yes ___No
f) Will your patient sometimes need to lie down atunpredictable intervals during a work shift? ___Yes ___No
g) With prolonged sitting, should your patient's legs beelevated? ______Yes _________No Cannot tolerate prolonged sitting ___Yes ___No ____
h) While engaged in occasional standing/walking, must yourpatient use a cane or other assistive device? ___Yes ___No
i) How many pounds can your patient carry in a competitive worksituation?
<> In an averageworkday, occasionally means less than one third of a workday,frequently means between one-third to two-thirds of the workday.
j) Does your patient have any significant limitations inreaching, handling or fingering? ___Yes ___No
If yes, please indicate the percentage of timeduring a workday on a competitive job that your patient canuse hands/fingers/arms for the followingrepetitive activities:
k) Does your patient have the ability to bend and twist at thewaist? ____Not at all ____Occasionally ____Frequently
l) On the average, how often do you anticipate that yourpatient's impairments and treatments or treatment would cause thepatient to be absent from work?
____Never _____Less than once a month
____About twice a month _____About three times a month
____About once a month _____More than three times a month
16. Please describe any other limitations that would affect thispatient's ability to work at a regular job on a sustained basis:__________________________________________________________ _______________________________________________________________________________ _______________________________________________________________________________
It certainly has been a new experience. I officially retired due to my health [ as per my medical professionals recommendation ] on April 18, 2006. It felt strange at work as the final day approached. I have been in the various types of the commercial trucking business since 1969 when I took a job with Hub Truck Rental Corp, in Farmingdale New York. After my stint with Merchants Tire, now McCarthy Tire Service I felt I had tread rubber in my veins. I will miss the smell of rubber and the truck activity, but most of all I will miss all my coworkers and many of the customers that I was acquainted with since I started in the commercial tire business aspect of the commercial trucking industry in 1986.
I am already nervous about the financial position of my wife Nancy and myself. I have already started the ball rolling as pertains to my being able to receive any help from the Social Security Department. I am not at liberty at this time to discuss the particulars. I do promise to fill in all the details after the process I started is completed.
I am still following the medicinal protocol as I described previously. It has done much to improve my moods, but has not done much to decrease my chronic pain and fatigue. I do feel that the correct decision was made about my stopping work.
Gregg [ my son ] and Krissy [ my daughter in law ] and my two grandsons have finally moved out of our home to relocate to Michigan. The house is so quiet now. I did not realize fully how their living under the same roof with Nancy and I for the last two and one half years had increased the stress level from just the normal everyday living together. I do miss them dearly [Michigan seems so far away from Virginia, especially for me with fibromyalgia who finds long drives and travelling so exhausting and painful ], but they needed to be on their own as a family unit for quite some time.
I am not sure if I mentioned this previously, but Nancy and I have put our home up for sale in order to down size and find a home that will be in less need of maintenance inside and out. Besides, the four bedroom and three full baths is much too much for just the two of us. For the last several years it has become increasingly hard for me to do what I always enjoyed doing and that was working in the yard on the lawn and landscaping and gardens and all the chores that go with it. Of late, I can barely last outside more that 15 minutes or so before it becomes to painful and tiring for me to continue.
Nancy has now also urged me to stop working and I have her full support. I do not know what have might of happened if she had not accepted my doctor's recommendations. It was not like this before, as previously, she kept encouraging me to continue working as long as I could due to financial and other concerns. She has seen what I have had to go through since the end of last August and has seen my medical professionals with me many times and has listened to what they had to say and the reasons for their recommending for me to stop working. I could not keep going every day if I did not have her full support.
Working on the computer and the Web site has still been challenging. My cognitive problems and lessened ability to focus on what I am doing is still a major problem. It has improved insufficiently. I sure hope that this area of my symptoms does improve or it will be an unbearable retirement.
I will have to practice what I preach and try to keep my own chin up! You my dear friends and readers, please do the same.
Bill
"Small opportunities are often the beginning of achievements."
April 2, 2006 - Please forgive me for allowing so much time since my last post.Things have been a little bit crazy and my concentration and focus have not been what they should be, and it has been hard for me to put my thoughts down in writing.
The decision has been made this past weekend and I am about to enter a new phase in my struggles against the beast, fibromyalgia. It is by the concensus of the medical professional that I am seeing that the time is now. The time has come for me to retire from the regular working world at 58 years old. I have been dreading this day for sometime now. Trying to travel to and from work and the job itself have become too much to bare. The latest rounds of Elavil , Cymbalta, Wellbutrin have done little to to alieve my pain and the crushing fatigue that I have been experiencing.
I have been asked to put my needs first instead of me putting the needs of my family, friends and work ahead of my own compelling needs.
I am giving my employer notice of my retirement tomorrow and giving the company two weeks notice.
Now come the challenges of getting SSI, attempting to find a home business, continuing this Web site, and still fighting the beast and finding treatment protocols that may improve my health and quality of life.
I will certainly try to maintain more regular posts on this log.
I hope everyone will keep their chin up under difficult conditions as I must do. Until my next post please try to count your blessings instead of your troubles.
"Today is a once-in-the-lifetime opportunity that comes everyday."
January 2006 Well, a new year has arrived. I sure hope and pray that the year 2006 will bring about new discoveries and treatments for all peoples who suffer from chronic pain and fatigue, whether called fibromyalgia syndrome or chronic fatigue syndrome and other related illnesses.
I have experienced and witnessed too much physical and emotional turmoil and pain as a result of these elusive and misunderstood illnesses through the years.
At this time I am still struggling to find some balance in my treatment since my going cold turkey and stopping my use of the controlled substance pain meds I had been on for many years.
Some of the positive aspects that I have noticed since changing my treatment protocol are as follows:
There has been a tremendous decrease with the problem edema that I was experiencing in my lower extremities. It has improved to the point that I have found it unnecessary to wear the special compression hose that I have had to wear for the last several years to control the edema. This edema had been so bad at times, that it led to skin stretching, including ulcerations and infection. I am definitely grateful for this change.
There has been a decrease in the frequency and intensity of my aches and pains, although I still sufferer from chronic and crippling lower back pain.
I have regained some of my strength in my legs, and have lost most of the feeling of feebleness that bothered me since I went cold turkey.
Something that have not changed are:
I still remain very fatigued and tired during the course of the day with each day usually ending in my feeling totally exhausted. This has continued to make it very hard for me to drive to and from work and get through my day.
My sleep apnea is unchanged.
Whether its called fibro fog or on-set dementia, I still have spells where my thoughts become confused and I seem to lose focus.
It still appears that my not being able to continue to work a traditional job is becoming more and more of an option I may have to consider.
I have had more intense bouts of depression than I experienced before going cold turkey last fall. My doctors are working with me on this.
Well that's all for now. Until my next post. Keep your chins up!
