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.