It just keeps getting funner and funner

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

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

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

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...

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

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

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...

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

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

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

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

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

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

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.