The Wonders of Medicine

Today was a big day for me at work (I work from home or I could not keep a full time job) - it is/was my last day before 19 days of vacation for the holidays, and I had more than the usual pile of stuff due by the end of the day. But my pharmacy sent a different strength of Lyrica than I had before, and I took one this morning without thinking about the different color of the pill. The result - by lunch, I was snoring through a conference call, my wife coming into the room and putting the mute button on my headset before waking me up. I could not finish the afternoon - missing 2 meetings. So, I will work tomorrow instead of having the long weekend. Such are the wonders of modern Pharmacology - just like the 60's all over again, except this time you can remember what happened.

Another Banner Day

Well, tomorrow is another big day. 10 years ago, I swore I'd never take another anti-depressant in my life. Immediately after that, I started my symptoms of CFIDS - some people think it has a relation to the levels of serotonin in your system - so I wonder. So perhaps I will find out something tomorrow when I start once again. My doctors (3) and wife have all told me this is a good thing, so I will start again tomorrow. Perhaps my CFIDS symptoms will go away!! fat chance huh? But it might help some....

My Wife

I would like to take a personal minute - (which I feel I can do since no one is following this blog) - to praise the love of my life and my best friend of 30 years - my beautiful wife. Most people say beautiful and they mean physical attraction - and I do as well. But when I say beautiful, I mean inside and out. My wife is a stunner. Phyically as beautiful as when we were first married, she has become a person inside that has so much beauty that I stand amazed by her daily. I am a baby with my heath condition (when men are sick the world must stop) - and yet she has nursed me through 8 years of this, and our relationship, though tried in the fire and strained in the past, has never been stronger than it is now. ANd this is a woman who knows EVERYTHING about me - and still loves me. And she's not stupid either! I've never met a woman like her before and I never will. God has given me the perfect woman for my wife. Beautiful inside and out, unselfish, giving to all those around her, willing to sacrifice whatever it takes, asking for absolutely nothing and the most hard working woman I have ever known. Her priorities are as they should be - she loves the Lord and respects her parents, she would die for her children and as I have said, she still loves me. CFIDS or whatever else, I am a truly blessed man. I have been given the most precious gift - the right woman to share my life with. Holly Katherine Conover Newton - I love you with all my heart.

When It Rains...

Strangely enough, it is raining hard today - metaphorically and meteorologically. In speaking of my health, an old nemesis has returned with a vengeance. Over the past years I have had shingles 3 times in the same nerve in my lower back. It has left nerve damage, called post herpetic neuralgia (PHN - it's the herpes zoster virus that causes shingles and chicken pox in children). Over the past several weeks, this pain has made a come back - and I don't know if you've ever had shingles, but I don't hate anyone enough to wish shingles on them. The nerve pain from this requires more character than all the problems associated with CFIDS. When you put this together with the severly compromised central nervous system and sensitivities brought about by the CFIDS, you have a combination that tests your tolerance like few other things I have ever experienced. Let me stress again that I'm not looking for sympathy, want no pity or anything else of the sort. I write this for my own cathertic effects, as well as to increase understanding of what it's like to deal with this problem.

Life is tough and in the grand scheme of things, this is nothing. But as an internal character building experience, you just can't beat it. As a Christian, knowing that anything sent to me has been given for my good and for His glory helps greatly. I never have to look far to see someone going through more than I am, so there is a sense of guilt as I write this, and in even trying to ask someone to understand what CFIDS is like. In the scale of things, it doesn't rank highly - at least not my mid-range case. I am not bed ridden, work from home so I can hold down a job, bring home a good pay check, and provide for my family. I am blessed beyond my dreams. I guess my desire is to try to legitimize this for those worse off than I am. It can be a terribly debilitating condition. I do want people to understand that although PWC's (see definition in previous posts) can act completely normal and most often do, once the doors are closed and we're alone, it all falls apart. The payback is literally hell - and I don't even have a severe case. God help all those who do. Enough preaching, nobody wants to listen tot that. Good night.

Today was a red letter day. My wife's health took a noticable turn for the better, I got my yearly increase and bonus, and my doctor referred me to a Urologist for the inevitable middle aged men's problems. Those things happen to you as well as CFIDS. The seemingly minor irritations caused by those things (men you'll know what I mean) - take infinite patience to deal with on top of everything else. Sounds like I'm making myself out to be superman, of course I'm not, but I can say that I have learned more about how God works from the time I have had this disorder than I would have had I not been forcably slowed down. When you slow down, you listen to things you would otherwise not have heard. It takes some years to understand this. "be still - and know that I am God"- try it some time. Not as easy as it sounds. The original words were uttered to the nation of Israel when they had just escaped Egypt and had their backs to the Red Sea, with Pharoah's chariots headed directly toward them - try being still! They didn't either. But God... my favorite two words.

Heard from a Friend

A friend wrote to me today and sent a copy of an email from the Executive VP of his company - Park Ave address in Manhattan. He has been out of commission for several months and diagnosed with Dermatamyositis - a rare autoimmune disease, that they thought I had for the first two years I was sick (they actually thought I had it's brother Polymyositis, which has same symptoms except for the skin component). He thinks he'll be back running his company as soon as his problems with prednisone work themselves out. I certainly hope this is true, but it hurts to see people who are not as far down the road I've been on and just don't know any better. I hope for the best for him - I know someone who died from complications of polymyositis a few years back. Hope that doesn't become two people I knew. I really do.

Medical Research - A commentary

For those of you who aren't following, I have included a link at the bottom of this blog which pulls the latest news related to CFIDS. Today, there was a profound artical entitled " Scientists Say Chronic Fatigue is Not Sleepiness". Now I know these people mean well, but come on! No wonder so many people think we're bonkers if this passes for news or worse, research. One has to ask, where is our money going to? Sometimes it's a damn shame that CFIDS doesn't kill people because it's the only way to get any research grants. Apparently, diseases that only rob people of their lives are no worse than automobile crash injuries - but at least there are cash payouts to recompense those poor folks. Juries are sympathetic, a tear is wiped out of the corner of the eye after the testimony, and all leave feeling sorry for the poor victim. Now I, like most other CFIDS patients, am no victim, nor do I strive for pity from others, but I understand how Rodney Dangerfield felt. We just don't get any respect! We can only hope more people are reading such insightful articles.

TGIF

It's Friday. That being said, I don't know what difference it makes. Over-rated saying if you ask me. They don't make weekends like they used to. I am encouraged however, to see that absolutely no one is wasting their time following this blog. At least no one else is coming to the inevitable conclusion that I'll never write the Great American Novel. Or even the pretty good Georgian short story. My daughter was an English major, but apparently any talent wasn't passed on through the DNA. I can't even spell without spell check. My elementary school teachers would all roll over in their graves to realize that they did such a poor job. Since word processing has come about, we've all forgotten how to spell - or is it just me? I mis-spell the most common words - repeatedly. Perhaps it's brain fog! I had to relate this to CFIDS somehow. As Red Skelton used to close his show - "Good night, and may God bless!"

Doctor's Update

I saw my doctor yesterday. I should say that I've been in treatment for about 6 months now. I went for several years thinking that anyone who said that they could help do more than only treat symptoms was just after my money - which I just don't have that much of. So, I used my meds to keep the status quo and that was life. In many ways, life was good. I have a job that encourages me to work from home - so I can hold down a full time job - in this economy, very blessed there. I have a wife who truly understands and cares - and has temporarily ruined her own health helping me. My kids will come at the drop of a hat and pitch in when needed - and God answers prayer.

But - His will or not, my condition had not changed substantially in 5+ years until we found a clinic in June that actually knew what we knew about CFIDS. They understood, and had the facts to show that a good percentage of their patients, many of whom I spoke with, got back much of their lives after an average of 9 months of treatment. I started treatments, and within the first 3 months, was feeling much better. Would still be on track and probably will get back on track, but my wife's health has taken a turn for the worse. At my last doctor's visit, they started treating chronic infections - and that is not a lot of fun. They die off and they create toxins, which can really mess you up. Now, it is time to start Neurotoxins - which is similar, but associated with the root cause of brain fog - one of the most troubling symptoms of CFIDS.

I'm not up for another challenge right now...

Life is What Happens When You're Busy Planning

This fairly famous quote from John Lennon is something I've often thought about. Not because it is so profound, but that it is observant and simple - a combination which often works well in hindsight.

As applied to my condition, I have been treated by a clinic specializing in CFIDS and Fibro since June, and had seen about a 50% improvement. Hopes were high, but alas, a setback was coming. Perhaps not a long one, but built on an 8 year history of illness, it gets discouraging. At the beginning of October, my wife got sick, officially exhaustion. It continued to worsen until now she is bed ridden and has been for 2 months.

Continuing to work, and trying to care for her and the mundane things of life has proven a bit too much to sustain the recovery. So after 6 months of very expensive treatments - I am very close to square one as far as my health goes. I will get better, but right now, my sole purpose is to help my wife with her illness. Life happens and plans change. In this case, gladly - but I wonder how long I can hold together with my energy levels being the ones that need to be relied on over an extended period of time. Scary thought. It's kept me up more than one night.

Notes to Anyone Who Stumbles Across This Blog

As happy as I am that you have stumbled onto my part time blog, I need to say that this exists for my own personal edification. Not that I'm anti-social or anything like that (although I am). I'll be happy if, over the weeks/months, you find some things here that can help you in your quest for wellness, but it's not my primary goal. That goal is to get certain thoughts on "paper" so that they exist - proving that what has happened, has in fact happened. Again, it's not all in my head - recurring theme here. Thanks for eaves-dropping. You're welcome to give feedback as to any of the thousand or so ways I could improve this blog. If I don't get around to it, don't take it personally, I've got CFIDS - I don't complete anything that those around me need.

Note the Times of Most of the Posts So Far

It says something about the habits of PWC's that most of my thinking occurs after midnight. Perhaps I should work third shift, when my adrenals and cortisol levels are at their highest. I take my evening meds - which include a tranquilizer (to slow down the overactive CNS) and a sleeping pill - and it takes me from the hyper mode which I need during the day to have enough energy to do anything, to a more normal mode, where my mind is not being assaulted by the TV, the lights in the other room, the noises, that smells - and a long list of other sensitivities. Let's just say that if there were a used Central Nervous System trade in shop, I'd have been there 8 years ago, and likely would lease a new one - top of the line/convertible - every year. Think I'd upgrade to leather as well.

In Your Head

This is a phrase I have heard once too often. One of my own family members called me a few years ago and while expressing enough concern to risk my getting angry with them, told me that they felt strongly enough about their opinion (based on what research I can only imagine) - that they had to tell me that they felt strongly that all of this was "all in my head" - I created it all. I wish I was so creative - this blog would be much better if I was. Let's face it, I've created two things in my lifetime - both my daughters - and when I did that I established a standard that was impossible to beat - since they are perfect, both of them - so I guess I stopped trying to create things.

Trouble is, in my talking with other PWC's, I think we spend a fair amount of time honestly (too honestly) evaluating whether all of this is in fact in our heads. I also understand that chronic fatigue is both a misnomer and an over generalization. It can be used to cover all sorts of things, and in today's rushed society, where we need instant gratification, people don't take the time to come to a clinical diagnosis - as I said, mine took over two years. My Rheumatologist didn't believe in the existance of CFIDS, believing that it was the adolescent manifestation of another immune/rheumatological disorder that had not matured to the point where it showed on clinical tests - trouble is, that never happened and it's 8 years later.

I am an easy going guy. I love my dog, my kids, my wife and pretty much anybody in my life - but don't tell me CFIDS is "all in my head" - you may not like the reaction you get. A bit touchy there...

Friday Wasn't Black After All

Kids all came over today and we had Thanksgiving because we were at the hospital yesterday. It was great. Neither of us had the energy, as my wife has been sick, but the girls did Thanksgiving dinner, with ALL the trimmings from top to bottom. All I did was carve the meat and say grace. It lifted the spirits having them here, as so often happens with this condition. You don't ever feel like you have the energy to do anything. Sometimes you push yourself and you just crash. Thank God, today was one of those days you push and you're so glad you did. Today was one of those days when having children was DEFINITELY a good idea...

Black Friday

No shopping today. Actually, never did that even before I got sick. Up at 5:00 AM? Not me - unless I haven't been to sleep yet. Insomnia is usually not that bad though. In bed between 1-2. Those late night hours, after I've taken my sleep meds, sometimes almost feel like normal - so I sacrifice sleep knowing that in the morning, just like Bill Murray in Groundhog Day, it will be the deja vu all over again. I've spoken with other PWC's and this is not uncommon - the sacrifice of sleep for some time where you feel normal - almost. Happy shopping all. Hope you've got both the money and the energy.

CFIDS Society/Research

Is it me or is this group struggling for identity? I receive the newsletter, support the organization, and even link to it here, until they tell me that's not allowed without their permission of course. Realize CFIDS is not a killer, it's not AIDS/HIV, but we haven't gotten anything done in quite some time. Can't even get the name changed. Again, I do not mean to offend, if my one reader turns out to be the chairperson of CFIDS.org. Just a frustrated observation.

I am not a Victim (if I remember correctly!)

The previous post may have you think that I am a victim or picture myself that way. On the contrary, the disease has shaped my character beyond what would have happened without it. Do I wish I was rid of it - of course, any one would. Would I trade it - tough question - I don't like giving up 8 years of my life to it, but I have learned much and as the video talks about, the internal struggle is the crux of the matter. I personally believe God sees, and has allowed me to experience this for good. That one took a while to come to - the intellectual knowledge is easy, but really believing it, that took some time. I would not have the compassion I have today were it not for CFIDS. At the risk of gettng preachy, everything has a silver lining. Damn hard to find though.

What's it like? Find out

The Holiday Spirit

I'm as much into holidays as the next guy. At least I used to be. Doesn't work that way anymore it seems. I've learned over the years, and partially because if CFIDS, that how I feel is not the most important thing in the world. Believe it or not ladies, that's a big lesson for us males to absorb. But I have to admit, there are times when how I feel just can't be ignored. Today happens to be one of those times. We postponed our celebration until tomorrow, as our kids are grown and have other families to celebrate with as well. So we'll do ours tomorrow, and I will hope for a better day. My wife has been sick, and when I'm the one with the most energy around, we're all in trouble. I hope the dog gets fed...Happy Thanksgiving if anyone's reading this.

First Steps

Once I realized it was not Polymyositis - which seemed to be months before my Rheumatologist did, I settled in to learn about this wonderful thing that had taken my life hostage. A word about the net - everything is out there, all equally credible - and some of it pure trash. Initial treatments were aimed only at the symptoms of the disease - try to give me more energy, less pain in my joints and muscles, reduce the neurological mess my central nervous system had become. Some helped, but of course had no bearing whatsoever on the root causes of my condition - please note very carefully I said CAUSES - as CFS is a multiplicity of conditions. And, if I have learned anything in the years and dollars wasted looking for the right snake oil it is this - if you have 5 problems that together produce CFIDS, any treatment that addresses between 1-4 will ultimately do nothing for your overall condition. Comprehensive understanding and treatment is a necessity - and very few people have enough knowledge to even attempt this. But, don't despair, I'll keep updating, there is some good news although the jury is still definitely out.

What's in a Name?

Chronic Fatigue Syndrome. I've never seen someone credited with naming this disease. If I had, he'd be dead now - and many, if not most CFIDS patients would probably agree. Hell, if fatigue was even in the top 5 symptoms for me I could accept this, but it usually isn't. The whole concept of the name is so BOGUS - it robs the condition of it's legitimacy, and demeans the character of those who have it in the eyes of others. Between doctors telling you your crazy and friends and family who think you just lack the character to pull yourself up by the boot straps, you can get REALLY mad during this phase of the disease - but never fear, you do grow tired of the anger. After you've sent out 40,000 mailers letting everyone you've ever met know that CFS is now called Myalgic Encephalomyelitis (ME) - as it is called in the UK. The disease isn't bad enough - we've got to suffer from the friggin name.

Parade of Physician's

Now it was time to start to see the specialists - as CFIDS, which nobody thought I had yet - is a disease diagnosed by exclusion - you eliminate all other possible causes and there at the bottom of the pile if good ole Chronic Fatigue. My initial and tentative diagnosis was Polymyositis. As my wife and I had a friend who had battled this for years, and has since died from it - we weren't excited at all. So the Rheumatologists came first. 3 different ones, none of whom agreed and all of whom threw drugs at me that didn't help in the slightest. The doctor I finally ended up with did not believe in CFIDS - which is a common problem for those of us blessed with this disorder. So much fun trying to convince your doctor that a) you're sick when all tests come back normal, and b) the disorder you've got actually does exist.
Spent over a year with the Rheumatologist looking under my finger nails to no avail. Then started the revolving door of doctors. Immunologists, Gastroenterologists, Opthamologists (yup), Neurologists (2), Pain specialists, Psychologists, Psychiatrists, Accupuncturinsts, Chinese Medical Practitioners - and the quacks who advertise they can cure anything as long as your willing to feed them money introveniously ($20 minimum) - and the really stupid thing is that these guys have WAITING LISTS months long to get in to see them, I think I at least covered the major groups here. It is NOT comprehensive.

How it all began - I think...

Following a particularly stressful few years at work during which time I had been prescribed both Prozac and Xanax, I had what was probably the trigger event of my CFIDS - shingles. Understand this is something I wouldn't wish on my worst enemy - hopefully, neither would you or you're a sick you-know-what. It is possible that stopping the Prozac triggered the CFIDS outbreak as my symptoms started almost immediately upon stopping the SSRI - which of course, changes the amounts of Seratonin in the brain, which some research points to as a possible trigger or even marker for the disease. More than likely it was the viral outbreak of shingles shortly before this though. Life was moving into a whole new league. My parents passed the lifeview on to me that you'd better enjoy yourself while you were young because sooner of later life was going to pick you up and beat you senseless, and that seemed to be starting to happen.

The questions, the anger, the lack of understanding - WHY, GOD? I was 44.

History 101 - Don't worry, just the facts ma'am...

I am a male, 52 years old - (too old for blogging no doubt!) - and have had CFIDS for 8 years. The diagnosis process was almost a full 2 years and, as anyone who knows about this insidious problem understands, you walk out of many doctor's offices where they find absolutely nothing wrong with you. Important note here: My wife, God bless her, immediately got out on the net and gathered weeks worth of the latest information on this disease (yes it's a disease! - it doesn't kill, just robs life) - and she annotated and cross referenced it to present to our family GP. I am twice blessed - not only did my wife make every effort to understand what was behind my condition, but my family doctor of 15 years, and a personal friend did as well. I work with Physician's in my job every day, and I can't tell you how rare this is. Having both - while now I look at it as absolutely essential, then I just saw it as a blessing.