CFIDS is Life - Honestly

It just keeps getting funner and funner

2010-03-30T11:30:00.002-04:00

Heard this morning from my HR department. They are forced to stop my paycheck since Metlife has not reopened my claim in over 30 days. Sure makes trying to get better harder to do with no money coming in. Metlife will undoubtedly drag this out as far as they can - hoping to force me back to work and saving themselves all kinds of money (figuring that I'm far from the only person they are doing this to). I'm not sure why they chose to loosen their attack dogs on me, but I think it's just the way insurance works in a difficult economy. Doesn't make it any easier for me and my family to live though. Going back to work now, aside from the fact that I'm not in any shape to do so, would be like admitting that Metlife is right - that my leave was unjustified all along. And it's all because I have a condition that cannot be proven by a lab test or any other relatively inexpensive means. A PET scan (hugely expensive) could show evidence of it (but Metlife would never approve the procedure as medically justified) - as could a tilt table test - but not sure they would even do that. Feel pretty well abandoned by all except my wonderful wife and family and my Lord - whom I need to come through on this one big time. And I thought healthcare was a national disgrace before this came about. Notice how much the new health reform is doing to help me with this as well - absolutely nothing. Some reform. President Obama thinks he's the greatest since FDR, when he's not even scratched the surface of the problems with healthcare in this country. It will continue to get more and more expensive- and I thought the objective was to get soaring costs under control. Silly me.

New Developments

2010-03-26T16:16:00.002-04:00

I know I just got through stating that I was not going to continue this, but today's happening's have to be recorded somewhere, even if no one is ever going to read them. My short term disability claim has been denied for the past month supposedly due to lack of sufficient information provided. While that was true for a few weeks ( my doctor, like everyone's is understaffed and busy) - but we've corrected this and sent them all that they asked for - an itemized list. After taking almost 2 weeks to review this, I have been told I must see an "independent" medical expert and be evaluated by them to determine whether or not STD benefits would continue to be extended to me or not. (Like I don't know the answer to that question already) - independent my @ss...
Anyway - I spoke with my benefits department later today and they are most likely going to have to cut off my pay since it's been more than 4 weeks since they've approved an update - even though they've gotten several from my doctor. Not having been born yesterday, it is not hard to realize that I am being forced to a decision - hire a lawyer or just go back to work, sick or not. Since I've worked sick to one degree or another for all of the past 10 years, seems like the latter would be the move for me. Besides, when you've got chronic fatigue (I could kill the person who came up with that never justifiable name) - you get sick of the fight whether it's justified or not. I do just want to say one thing - anyone who knows me knows that I am an honest - to a fault - man. And it hurts having your integrity doubted and denied. Just when I had gotten used to the fact that most people don't believe in CFIDS in the first place - now I'm being asked to stake my financial future on the medical opinion of a doctor hired and paid by my insurance company - gee, I wonder what conclusion he's going to come to? Anyone like to place a bet? I may need it to live on if I don't return to work in the next few weeks.

Apologies - IF anyone is reading

2010-03-18T20:16:00.002-04:00

My apologies to anyone actually reading this. I have been out of work the past few months on a medical leave of absence and very reluctant to post. I may abandon this as things like this are being increasingly used - even out of context, as evidence in court etc. Don't expect my situation to come to that, but these days, being honest often does not help. So my apologies to anyone following this and hoping for any nuggets of wisdom - but let's face it, if you've read all the entries up to this one, you've had a long wait for anything worthwhile. Thank you for perusing though. Once I get to feeling better, I will stick with my day job and will not attempt the great American novel.

Julie and Julia

2009-12-27T17:18:00.003-05:00

Just saw the movie, it was very good - Meryl Streep, as so often is the case, was spot on. Learned a lot about what makes a successful blog from this movie as well. Must apologize for anyone reading this one. I repeat myself, ramble and my grammar is horrendous - not to mention that I don't really have a point (or a clue sometimes). I'll take English and start another one under a Pseudonym :) - but for now you're stuck with me - of course no one is forcing you to read this so evaluate whether the time from your life is worth what you've put into this.

One More Thing...

2009-12-27T17:05:00.002-05:00

Anyone with CFIDS is used to having to prove the very existence of the illness in their lives. I've been no exception - I have a brother who has told me CFIDS is all in my head. Wish that could possibly be true. I'd also like to take whoever came up with the name Chronic Fatigue and string them up. If ever a name was a misnomer, this is the one. Frankly, I'd rather be called a drunk (if I drank that is). If fatigue was even one of the top 5 problems to work through, I'd accept it - but the way this condition ravages the central nervous system is by far the worst for me. For most of the time I've had this, if a light bulb blew out when I turned it on, that small pop would be enough to launch me into a migraine and the adrenaline would completely shut down the cognitive process - for up to 3 days. Im some ways I am better now, but with this multiplicity of conditions, when one gets better, one gets worse as well.
As I write this, just got a call that one of my friends from work (same age as me) is not expected to live through the night. Everytime I start to feel sorry for myself...

Well, It May Have Finally Happened

2009-12-27T16:55:00.002-05:00

For 9 years plus now I have been waiting for the answer to the question - what happens if I catch the flu? I'm not sure it's the flu I've gotten, but I sure am sick. Still hopeful that it could just be a bad cold - and literally fearing that it doesn't get into my chest. If that happens, I could be in bad shape - as it takes me a week to recover from a 24 hr virus. So the flu could easily either cause complications or just take me a month to recover from. I'll keep you updated - (assuming someone's reading this that is). Hoping not to give it to my wife, whose condition is bad enough already - if she gets sick and we're both down - Lord help us, as there's nobody else around.

I know when you are young you think you are 10 feet tall and bullet proof, and as you age you start the realization process of all the things that can go wrong, but literally living in fear - that's a new one for me, and frankly, shows a lack of faith in my Lord to watch over me at all times. Sickness rarely produces great faith, although I can truthfully say that I would not change the past 9 years for anything. What I've learned through this illness has been something I could not have done without it - I am certain. Enough for today.

It's not About Me

2009-11-30T23:05:00.002-05:00

BTW - I've changed the font. I'll see once it's posted if I like it better or not. Now - down to cases. 10 years ago, when I first got sick with CFIDS, it was always about me. A year and a half ago, my wife got as close to total adrenal failure as you can get. Since that time, she has had her good days and bad - and I've learned one of the most basic of all lessons - it is more blessed to give than to receive - even if you feel like you're dead from giving. Taking care of my wife after 10 years of her single minded dedication to my health has not only proven to be a blessing, but has brought us closer to each other than we've ever been in 30+ years of marriage. Seriously - most marriages we see go the exact opposite direction - fiery at first, and once infatuation, or worse - sexual attraction - ends - it's over. It takes varying degrees of time for the worst to come about, but it usually does.

Not us - we drove home from our honeymoon not speaking to each other - I think the operative word there is DROVE. (I've learned some things in 30 years). And have had our setbacks as all marriages do, but have continually gone in a positive direction. It takes time to learn how to be married. Nobody tells people that. But if I had to say what this hideous disease has really taught me, put a gun to my head and I'll tell you that the things which seem the worst at first glance can many times turn into the biggest blessings. That's our God - taking man's failures and turning them into blessings as we try to walk with Him. Thank you for your faithfulness Lord.

I was Afraid of this...

2009-09-25T19:32:00.002-04:00

Just saw a few notes from people who are reading this blog. Never thought that would happen... Perhaps my novel should be next. Seriously, anything that helps - even a little - for someone with CFIDS/ME or Fibromyalgia is a blessing and I'd be flattered to think I was a blessing to someone in some small way.

We've made a decision. With no great results after more than a year of treatment (quite possibly due to all the stuff that happens in life as much as effectiveness/ineffectiveness of the treatment), we've got the bills paid - and have decided to try to attain more of a maintenance mode. The insurance could stop paying at any time, the exceptions could suddenly be rejected - with the state of health care in America anything could happen - and I can't think of many of them that would be good. So, we're admitting a certain level of defeat and settling for a consistent level of 40-60% instead of trying to get the 90% that some get. Feels like deja vu all over again. No wait - it is!
I'm not trying to discourage anyone. This is what's right for me - we've got finances as well as health to watch. Who can enjoy better health if all you can use it to do is work more to pay off the bills? Before I started this latest - and most promising treatment, I had a base level that I existed at for years. With all the changes, supplements and meds, it's become a total roller coaster - making work nearly impossible and life more difficult than I would like. So the decision is tol go for low cost, no changes and no more bills over the possibility of getting 20-30% better. I sold out, I'm a wuss - but there is more to consider than myself here. My family is of course formost in mind. My wife has been there for me inbcredibly for the nearly 10 years of this. Day in and day out she has encouraged, worked, aided, done without, lived her own life like a nun because mine is like a monk - and it's enough. She deserves more. I'm actually content, but she deserves more. Funny - no shaking of my fist in the air at God here. So many people suffer with so much worse - shame on me if I did that.

My muscle tone has diminished significantly. I need to dedicate myself to the small things for which I never had the time - and see how much better I can get from them. More sleep, a better diet and some mild but regular exercise (VERY moderate Yoga seems to work well) - the plan is to reduce all the meds to only what is absolutely needed, slowly ween from anything else that I don't want to pay a small fortune for before I die someday - and then start with this and see where it leaves me. I'll still keep going to the doctor/clinic (if he'll have me) - but what I agree to will be greatly reduced and from more of a maintenance perspective. I am hopeful. I'll have to keep you updated - now that I know somebody's actually reading this. BTW - thanks for investing your time in this - I do hope it helps somehow. If you've read from the beginning, this was started mostly for me to put my thoughts "out there" and see if that didn't help me to feel better. Well, it does - a bit. And as anyone who has this life defining condition will tell you - a bit is significant.

Updates

2009-08-29T22:59:00.002-04:00

Time for catch up. After years of successful employment, including almost 9 years with CFIDS, even in the midst of an FMLA, I seem to be getting into trouble at work. Has my health deteriorated - no. Has my work ethic changed - nope, although I work from home (only reason I can hold down a full time job) - is the brain fog getting so bad I can't handle it anymore - absolutely not - but yet, I find myself in a position where my employer, although saying that my health is more important than my work, and that I can take the time I need to try to dedicate myself to the treatment plan the doctor has for me, my employer seems to have decided that a 30 year dedicated career may be about as much as they can take - even though my job is protected as part of the law due to the FMLA. Seems that if I can't pony it up and get to Bermuda (yes, it is for work), to help get a new contract signed, it will go badly for me. Not sure which was the greater shock to me - the position that my work was not meeting all standards anymore or the shock I was left in when my manager explained to me that a part of my basic job requirements, if I needed to be in Bermuda in order for that contract to get signed, I needed to figure out a way to get myself there or there would be consequences. I've never needed legal advice before, but my intuition tells me that's a streak that's likely to come to an end. FMLA law doesn't seem to matter. We'll have to see how this soap turns out...

There's always something new and exciting

2009-08-12T16:00:00.002-04:00

Guess what happened this morning? I woke up and my arms and legs felt like they'd spent the night in the gym without me beating themselves to death. Muscales/tendons that felt fine for weeks and still normal when I went to bed last night were exhausted to the point where they were unusable for even mundane tasks this morning. How does this happen? What could cause this - when my body is supposedly resting - in, by the way, a VERY expensive power controlled, tempur-pedic king sided bed we bought to maximize the chances of my getting some good sleep. Looks like I should get my money back eh?

I have to wonder, and I will try to check, if others who have this condition exhibit similar symptoms. It happens infrequently and most times is not bad enough to be more than another inconvenience to negotiate through the day with. But today was scary (hope my wife doesn't actually read this blog)... If I find more about it, I will post here - not that anyone is reading... If I know someone was, I'd have to re-establish all sorts of order here, and I'm just not up to that - especially not today.

Time to Catch Up

2009-07-25T12:03:00.002-04:00

Again, it's been a long time since my last update. Part of the nature of CFIDS. Over the past few months I have been in pharmaceutical hell of one kind or another. So much so that my doctor(s) and I have all agreed that it is time to just take stock and start over with a lot of things. I have been in treatment for 1 year at the clinic. Typical results are about 70 to 90 % improvement over that period of time. My results have been more like 30 %. Disappointing, but there were outside circumstances that kind of short circuited my recovery. So, it's back to the drawing board, with me taking an intermittent LOA from work and using 1 day each week to get treatments at the clinic. The IV's and the injections. My PCP just took 20 vials of blood yesterday in an effort to give me a baseline to start with. Detect any imbalances or other conditions that may have developed to complicate the matter. So - we move on. Frustrated, disappointed but still so much better off than many. Our doctor put one of his patients in touch with my wife Holly, because she was able to work so well with insurance coverage - and this woman has CFIDS, and recently fell and broke her back in several places. So in my life, there is never a time when I have to look far to see someone who is in worse shape than I. Disappointed I will count my blessings.

Life and Pharmaceuticals

2009-05-27T18:46:00.002-04:00

I had a visit with my doctor last week as something had started to go badly wrong. If you've taken the time to read much of this aimless blog, you know that after starting treatment at a local clinic specializing in CFIDS and Fibromyalgia, I had seen a considerable improvement. In fact most patients see 75-80% recovery within a year of starting treatment. I had been well on my way toward that... and I have no idea where the train jumped the tracks, but it sure has. That the problem with working on so many different things almost at the same time - any residual problems from last week's area of concentration, and you can't tell what's causing it. I'm even having trouble telling what is cause and what is effect. Sometimes it's hard to know. The latest, is a series of "new" symptoms, sweats/chills, stomach and digestive problems (later diagnosed as IBS), deterioration of the nervous stystem to the point where I cannot hold a cup in my hand without it shaking almost uncontrollably. I spend most of the day feeling exactly like someone with a fever of 102-103 - which, is pretty much exactly the way I started out. Net gain = zero. Hard to admit when we seemed to be going so well. So, we're going back over some things again. I will also get a complete physical from my doctor, and share the treatment plans with him to get his feedback - another set of eyes is always good for some fresh perspective. Let's hope at least.

CFIDS and Colonoscopies

2009-04-18T19:15:00.002-04:00

I guess I should start by explaining that I have a genetic predisposition to colon cancer. My mother died from this terrible disease at 55 years of age - when I was 21, almost finished college. Good thing I only had a month left before graduation or else I would have flunked out - just didn't seem as important as it had before.
So, I need to get regular colonoscopies. Problem is, with CFIDS, the preparation and the anesthesia make this at least a week long event. Hard to get yourself psyched up to take an entire week off to get one of these done - but I did this past week.
Worked and started prep Wednesday night. They don't use that fleet stuff anymore, instead you drink about 64oz of some other stuff. That's about 8 glasses or so - A boat load of stuff to drink that has a cumulative effect of producing more and more nausea. The first 4 glasses were ok, but once my stomach started getting nauseous, it got harder and harder to drink the stuff, until I just couldn't drink anymore. About 2 hours after I finished, the nausea got so bad that most of it came up instead of doing what it was supposed to do. Now what do I do - can't or won't start over! Decided I was "clean" enough to go for the procedure. No food or meds that day/evening kept me up almost all night and gave me one of the worst migraines of my life - not sure if the migraine caused the vomiting or the other way around, but it was a very bad combination. Only been that sick a few times in my life.
So I went for the procedure, and other than 1 polyp, came out fine. It's Saturday evening now, and I still don't have my strength back from the draining earlier this week, and I have to start my CFIDS treatment back up on Tuesday - IV's and injections. Then I start the heparin back up, which is a twice daily injection just like insulin for diabetics. Not hard, but it does get to hurting after about a month there is no place you can put the needle that isn't already bruised. But, I guess I'm being a baby here. Don't want to turn this into a complainer's pulpit, so I'll get to the point. I've had 2 colonoscopies in the last 7 years, and because the experience didn't improve much, I think I' ve had my last - I won't say forever, but certainly for a good long time.

I'm Back - Well - almost

2009-03-29T23:54:00.003-04:00

It's been too long since my last entry but since I didn't know anyone was reading this, I didn't think it mattered. If you're hanging on every word I have two items for you: 1) Get a hobby, get a job - get a life... 2) I'm sorry for the delay - it's been a rough month with a lot of changes.
I have been injecting myself with Heparin daily in an effort to thin out my blood and the lining of the vessels - which tests have shown are several times the thickness of those of a normal person. As if I'd be normal if we fixed this! :0
They have adjusted up my anti-viral meds as well, and it's given me some wonderful side effects that have proven to be EXCEEDINGLY difficult to work through 5 days/wk. Fatigue is worse, cognitive difficulties and mental freeze ups happen more and more often, body temp is very much like one going through the height of menopause (I guess it's manopause for me) - but as you women know, or will soon, it's hell. Feeling like you've just broken a fever of about 102 is not fun, but that's pretty much all evening, every evening - sometimes all day. I've got a rash all over the upper portion of my body, which is one of the side effects listed of the virals I'm taking (which are like those given when you have shingles etc - except I take them for months instead of 7 days).
The job is suffering, I try harder, the stress increases, the sleep decreases and the spiral goes downward. Been there, done that could use the T-shirt because the one I'm wearing is soaked through to the bone. I have nightmares that have me waking up with my heart pounding in my chest, pulse about 120 and many times soaking wet as well - so there is just no rest in sleep anymore at all - which degrades everything else very quickly.
Sorry - I'm whining here, but every once in a while it just feels like too much - and that's why I started this blog in the first place. It feels good to put it out there, even if nobody's reading it. If you are reading this - I'll try not to keep this up so I don't lose you. If you have CFIDS/Fibro - I hope it helps in some way.

Apology and Update

2009-02-05T10:48:00.002-05:00

First off, I must apologize to future generations who will read this - at some time. As no one is following this blog now, I don't feel too guilty - and no, I don't have delusions of grandure either. I can't have that because I don't even think I spelled it correctly, although I know it's possible to have many conditions that you can't spell. (how's that for a run-in sentence)? My English teachers are all dead now - one benefit of getting old.

Now for the update. In the last month my treatment protocol has gone through several different things - most with positive results. They tested me for heavy metal exposure/toxins, and it came back negative. Very pleasant surprise with all they have said about the fillings in your teeth, fish we eat etc. Then they tested for neurotoxins which I fully expected to come back positive, but did not. With all the brain fog (editorial comment) - the hardest part about CFIDS is seeing you slowly become a shadow of your former self earlier than should be necessary. You feel like 75 when you're 45. Makes you not want to feel what 75 is going to be like.

So, the neurotoxin test came back negative, which I am VERY thankful for, because the treatment is something called Questran, which requires huge doses of Vitamin C to keep your body operating normally. Once a week, you have to take enough Vitamin C to force a flush - like prepping for a colonoscopy, only using Vitamin C. I hate Colonoscopies enough not to get them at all (which is utterly stupid, because my mother died of colon cancer at 55) - so needless to say, I was not looking forward to this treatment protocol. Thank God I don't need to go through a few months (or more) of this.

The last test was a Thrombotic Marker Panel, a measure of the thickness of both the blood and the blood vessels. Many CFIDS patients have blood several times more thick than normal people - when they do a large number of blood tests on me, after about the 4th or 5th vial, the blood slows to almost nothing. Certainly not normal. The effect on the blood vessels is to increase the thickness of the walls, which makes absorbsion at a cellular level much more difficult. Treatment is self injection of Heparin 2x/day. This is not as bad as it sounds, like anyone who gives themselves insulin would attest to. I have had side effects from this that indicate my tolerance for Heparin may be very low - something I need to speak to the doctor about at my next visit.

Again, sorry for no posts in a month. When no one is following, you get the feeling it just doesn't matter. If this makes me feel better it's good. If it could help someone else to feel better, I'd be much more dedicated to it.

Two Steps Forward...

2009-01-06T20:26:00.002-05:00

It seems like there are a lot of one steps back lately. I started treatments at a clinic that specializes in CFIDS and Fibro last June, and was making significant progress over the first 5 months or so - very encouraging - and you don't realize how hard it is to be encouraged by anything in the treatment of this crazy disorder. In fact, most of the time, it feels more like I'm crazy rather than the disorder.
I was doing better. Really better - measurably better. Honest.
Now I feel like I'm stuck in no man's land, halfway into a treatment which isn't going to move backward, but suffering again from some of the things supposedly already addressed by treatment. My wife's health has been bad for the last 3 months, and when the guy with CFIDS is the strong one in the house - ain't much getting done right or well. So now my treatment is moving on to address other things - and I'm not sure if I'll get the chance to go back and regain what I had a few months ago. The other thing that bugs me is thinking about just how effective the treatment was if it took only a few months of the stresses of life to dismantle it.
So, we'll see what happens. Encouraging has been replaced by that same old familiar feeling - running on fumes.

The Wonders of Medicine

2008-12-18T21:25:00.003-05:00

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

2008-12-12T23:39:00.002-05:00

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

2008-12-12T08:44:00.002-05:00

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...

2008-12-12T08:26:00.002-05:00

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.

2008-12-09T20:12:00.002-05:00

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

2008-12-08T22:41:00.002-05:00

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

2008-12-05T21:15:00.003-05:00

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

2008-12-05T20:56:00.003-05:00

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

2008-12-03T21:50:00.003-05:00

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

2008-12-01T00:24:00.004-05:00

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

2008-11-30T01:48:00.003-05:00

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

2008-11-30T01:41:00.003-05:00

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

2008-11-28T22:55:00.003-05:00

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

2008-11-28T20:27:00.003-05:00

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

2008-11-28T14:43:00.003-05:00

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

2008-11-28T01:55:00.003-05:00

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!)

2008-11-28T00:18:00.014-05:00

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

2008-11-28T00:15:00.001-05:00

The Holiday Spirit

2008-11-27T02:47:00.013-05:00

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

2008-11-27T02:47:00.006-05:00

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?

2008-11-27T02:10:00.007-05:00

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

2008-11-27T01:58:00.002-05:00

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...

2008-11-27T01:47:00.006-05:00

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...

2008-11-27T01:21:00.002-05:00

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.