Stephanie A. Kesler: The Slat Rat and Chronic Fatigue Syndrome and Fibromyalgia

MIA?

Sun, 23 Apr 2006 06:00:50 GMT

I realize I've been Missing In Action for the past few weeks - just a post every third day or so. I've been sick with some sort of nasty lymph node/viral infection for the past two weeks and just as I headed down the home stretch with the viral infection, I picked up something else. I'm not sure what has happened to my immune system. All my little white blood cells are probably down by the pool sipping pina coladas instead of attending to business.

However, that being said, this evening Peter and I saw The Inside Man. I absolutely loved it. Smart smart smart with a good heart. Acting is excellent. And it's also a love affair with New York City. It's my favorite Spike Lee movie in a long time. Just loved it. Plus you gotta love the mental visual of Spike Lee directing Christopher Plummer. New school meets old school and it's all class.

A definite must see smart, thoroughly enjoyable caper movie.

Voids

Sat, 03 Sep 2005 01:01:08 GMT

It's been a really rough couple of days - but I'm hanging in there. For the first two days, I was pretty much a sobbing machine. But I'm doing better - I'm not breaking down every ten minutes. I do o.k. - unless someone asks how I'm doing. Then I start crying all over again. I've cried so much that my left eye is all plugged up and swollen. It looks like I have some sort of disease.

The condolences I received were just wonderful. They really helped.

In addition to the sheer emotional pain, which was of course expected, I've been stunned by the void. Clemmie's death has left a huge physical and emotional void. The house is so quiet. I never realized how much noise a dog makes - even when they're sleeping. The house is just completely still and empty. The lack of sound, of dog sounds, has hit all of us incredibly hard. Peter, Seth, and I are floored by it. What a true void.

The emotional part is huge - Clem and I were a pair - and I knew that. But I didn't realize how integrated we really were. Last night, as I was laying in bed, I realized something. I now get why she always waited at the door for me to come home. She was waiting for her partner - she didn't know when (or if, for sure) I was coming home. So she was there waiting. I know now, that I'd wait a very long time for Clem to come back. To come home.

Brain Lapses

Mon, 25 Jul 2005 05:27:27 GMT

One of the joys of Chronic Syndrome is impaired cognitive function. I'm very fortunate. I only experience occasional periods of true cognitive dysfunction - but boy when they hit, the wheels just fall off. This week, I'm experiencing the worst bout I've had in over a year. It's been bad - my dysfunction manifests itself by profound forgetfulness and an inability to stay focused - I literally lose track of where I am.

This week's two signature events occured on Wednesday and Thursday. On Wednesday I almost ran a red light - and by almost ran, I don't mean that the light had just changed. The light was red and had been red for a very long time. I saw the light, but the red didn't register. I was roaring up to the intersection going about 40 mph, when all at once, I realized that red meant STOP. I slammed on the breaks and managed to stop just before Henry entered into the intersection.

On Thursday, I misplaced my journal. Now, if I had to name the one thing that I would never ever lose, it would be my journal. It's also important to note, that I rarely misplace things or lose things. I have little systems, so I generally know where just about all of my stuff is at any point in time. However, when cognitive dysfunction shows up, the systems get blown to hell. And, I have lost my journal. I have searched high and low for it. It isn't at home. It isn't at work. At this point, the last place I remember having it in my possesion was at my speech therapy appointment. Their office is closed on Fridays, so I'm going first thing tomorrow morning. I hope it's there.

Of course if it's there, I really hope no one read it. sigh...

A Geocaching Fool

Mon, 25 Jul 2005 05:13:21 GMT

I'm closing in on my 100th geocache, as a result I've been caching like a maniac for the past week - not bagging large numbers of caches. Instead doing some fun ones so that I can make the march to 100 memorable.

Late Friday afternoon, the Ski Boy, Alix, and Gunner and I did the mountain cache, Flattop. This was my second attempt at Flattop - and this time we approached it from the west side. Much better!!!! We had a very good time - even though it poured rain for part of the climb.

Yesterday morning, the Ski Boy and I did two fairly easy, low stress caches in here town - my legs were so trashed from Flattop, that they weren't up for much else. We then repaired to Cafe Amsterdam where I had one of my favorite breakfasts - French Toast and Beer! Yum - breakfast of champions!

Finally, today, I really took the plunge and did Touchdown. Touchdown is located high above Anchorage on a big glacier moraine locally known as the "Ball Field" because it looks like a giant football field. The climb up is extremely steep and long - tough duty for a wussy slat rat. However, I had a wild hair about doing this cache and nothing - not the Ski Boy, not rain, not anything was going to dissuade me from my mission. I had a blast - although I was certainly a slooooooow moving vehicle. The view was definitely worth the pain and suffering. Even though the Ball Field has a high suffering quotient, it has always been one of my favorites. I also figured that my days of climbing up to it were long gone. Which is one of the reasons I had this jones about doing it. I am so tired of not being able to do things that I'm to the point of saying "Fuck it all, I'm doing it anyway". We'll see how this new approach works out. But at least I'm having fun in the short term - of course I won't be able to get out of bed tomorrow morning...

Anyhoo, I bagged Touchdown, and then very carefully made my way down on rubber slat rat legs. Actually, if the adventure had ended at the top, the whole thing would have been about right effort-wise. The trip down was made on a pretty empty tank. I was quite happy when I finally staggered back to the car!!!!

Touchdown was cache number 96!

Various caching adventure photos will be posted tomorrow.

Where Does the Time Go?

Sun, 10 Jul 2005 02:06:46 GMT

I've been bad on the blogging front again - it has just been a crazy few weeks!!!

We're in the midst of the final push on my gigantic project at work, Peter's sister Suzie is up visiting, I'm buried in preparations for Government Hill's 90th anniversary celebration which is next Sunday, etc...

Plus, I made a new rule - I've got to get enough sleep. The current Slat Rat pace is over the top. In order to ensure that I don't have a major Chronic Fatigue Syndrome crash, the Slat Rat butt must be ensconced in bed by 9:00 PM. Considering that we're in the midst of a gorgeous summer and the sun is still beating down at 9:00 PM, the bedtime rule is draconian. But, I'll keel over if I don't get enough sleep. Blogging is definitely suffering as a result of the Bedtime for Bonzo rule.

Today's Melman Moment

Tue, 21 Jun 2005 05:47:15 GMT

Today's Melman Moment has a certain aesthetic appeal. But first, the backstory:

For the past 20 years, I've had pretty severe Ileo-Tibio Band tendinitis. I can do some things like skiing, biking, walking, etc. But I cannot run, roller blade, swim, etc. I've had three surgeries, run the gamut of anti-inflamatories, done a bazillion hours of every sort of physical therapy imaginable with absolutely no luck. However, other than the no running, it hasn't been a major lifestyle issue - until recently.

Over the past two months, my right IT band has tightened even more and is now pulling my tibia and fibula up into my femur. And my poor patella is getting squished off to one side. All of which has resulted in some nasty little knee discomfort.

So, my chiropractor suggested we wrap my knee. Well, I've had my knee wrapped a kazillion times and never once did it do any good. But to appease my chiropractor, I agreed (while internally rolling my eyes). Well, she whipped out this very spiffy blue wrap and proceeded to put a strip here and put a strip there. And after a few minutes, she was done. I looked at my knee and asked "That's it? Is this actually going to do something?"

She assured me that it would - this same technique has been used with great success on Lance Armstrong. Well - if Lance uses it, it's good enough for me!

However, it is very odd looking. I have received a ton of comments. My personal favorite is that someone thought it looked like a Matisse paper cutout.

All this being said, it does seem to be working a tad - I can feel a bit of release on my IT band - not a ton - but the tape has only been on for a few days. Plus my tendinitous has a twenty year head start. Realistically, the tape isn't going to fix the problem - I'm going to have to do something more drastic. So I think my next step will be rolfing - we'll get the stuffing ripped out of the IT band. That will be quite the little experience.

Here's a picture of my artistic wrap job - I took this one myself. Peter also took a several pictures. But my thighs took on a beluga-esque appearance in those photos. So, we're going with this one:

I am Melman

Mon, 20 Jun 2005 04:50:30 GMT

Peter, Alix, and I saw Madagascar last night. There is no question, I am Melman.

Melman is a giraffe who is worried about his health plan, has a pharmacopia up to wahzoo, and is looking for a good chiropractor. Actually, I already have a fabulous chiropractor. I should recommend her to Melman.

Stupid. Stupid. Stupid.

Sat, 21 May 2005 23:36:19 GMT

I have quite a fleet of meds that I take on a daily basis - a batch in the morning and a batch at night. And actually, "med" is probably the wrong term. Most of what I take are vitamins and supplements. My only morning prescription med is the very benign Singular.

However, my nighttime meds are a little more potent. There are few supplements tossed in the mix, but I also take two more powerful drugs, both of which are key players in treating my Chronic Fatigue Syndrome.

Well, last night I was a total space cadet. I took my meds at about 10:00 PM and promptly forgot the entire act. An hour later, I was getting ready for bed and took another batch - I didn't notice that the Friday container was gone and that I had grabbed the Saturday container. Well, I didn't notice until it was too late - just after I had completely swallowed the whole Saturday kit and kaboodle. sigh...

I contemplated the ramifications of my stupidity. I wasn't going to die. But I would completely blow my Saturday - I wouldn't be able to get out of bed until dinner time. It was obvious that I had only one option - the ol' fingers down the throat trick. Which I have never done in my life. But, since I wasn't interested in sleeping my Saturday away, I had to go for it.

Which I did. Unfortunately, the potent pills are small and digest quickly. As a result, I was not completely succesful. I went to sleep not having any idea at what time I might actually wake up - morning or night.

Surprisingly, I managed to stagger out of bed at 10:00 AM. I've been a zombie most of today and the fog is just now beginning to lift. But at least there's still part of Saturday left.

I do have to say that I feel well rested!

Kermit the Frog Here

Sat, 23 Apr 2005 00:21:11 GMT

Well, it has been an exciting, eventful, and funfilled week on the vocal front.

Last week, we made a major medication change - I went off of Flovent and on to Qvar. Both are inhaled steroids (but not the Barry Bonds/Jason Giambi type of steroids) used in treating asthma. I'd been on Flovent for almost ten years - it is a very effective asthma preventative. But it has a major downside - large particulate size. Some of those boulder size particles came to rest on the slat rat vocal cords. Which my crack medical staff felt was partly to blame for my hoarseness.

So, last Thursday, I went on Qvar - very small particulate size. No boulders.

Within three days, my hoarseness was almost completely gone. I had a real live voice.

And even better yet - my voice had changed both in pitch and timbre. My voice was at about two pitch steps lower and resonated - really resonated. It was so cool!!! I was beginning to sound like Lauren Bacall.

You'll note that the above paragraph was written in the past tense. sigh...

As it turns out, Qvar and I don't get along. At the same time I was turning into Lauren Bacall, I developed: five canker sores, nasty insomnia, and sinusitis (surprisingly, sinusitis is a possible Qvar side effect). Plus the Qvar didn't work as well for me on the asthma preventation front.

So, I quit using Qvar on Wednesday. But I held off going back on Flovent until today. My weekly speech therapy appointment was yesterday and I wanted my long suffering speech therapist to hear how cool my voice sounded. And she loved it. I told her not to get too attached to it since I was going back on Flovent.

So, I went back on Flovent this morning. And already, my hoarse froggy voice is on its way back.

I went from Lauren Bacall voice to Kermit the Frog.

That is so not right.

Adventures in Speech Therapy

Sun, 17 Apr 2005 01:51:30 GMT

I've been doing (undergoing?) Speech Therapy now for a little over a month. This latest medical adventure was triggered by the unwelcome onset of Vocal Cord Dysfunction which in turn is mostly likely a by-product of Chronic Fatigue Syndrome. My vocal cord apparatus is not working like it should. As a result, breathing can be a challenge and my voice is ridiculously hoarse.

I have to say Speech Therapy is definitely high on the entertainment scale. Vocal exercises have a certain goofy quality. For example, for the past week and a half, as a part of my daily speech and breathing exercises, I've been assigned glottal fries (You want glottal fries with that?).

A glottal fry has to be heard to be believed. It sort of sounds like the rough opening tone of a really really really deep belch. It comes from deep within the diaphram and each fry should last about 10 seconds. So, I do my fries off and on throughout the day. But it is very important that I do ten of them first thing in the morning to limber up my voice.

When my speech therapist showed me how to do a glottal fry, I couldn't do it - I was laughing too hard. However, in the privacy of my home and car, I've been glottal frying away.

Peter is very jealous - my glottal fry is much superior to his.

The Slat Rat and Speech Therapy

Sat, 19 Mar 2005 04:30:15 GMT

This week, I had my first ever visit to a speech therapist - sort of late in life for the ol' (46 years old) Slat Rat.

As mentioned previously, I've been diagnosed with Vocal Cord Dsyfunction - which just seems hilariously ironic. My vocal cord seem in fine shape on the talking front.

However, on the breathing front, they have a definite issue. They get all tight and block my airway. As a result, getting air in has been a real challenge - off and on over the past two weeks, the whole breathing thing has been as bad as a bad asthma attack. Hypoxia has definitely reared its ugly head more than once.

However, my speech therapist is all over this stuff. She's armed me with a whole passel of various breathing exercises - which have definitely made a significant difference.

I had thought that I would need just one visit - I thought I had this breathing stuff nailed as a result of yoga and zen. Just show me the exercises and I'll get it down. However, it wasn't as easy as all of that. Even with all of my zen and yoga, I'm really going to have to learn a completely new way of breathing. Which will take some practice.

And my speech therapist wants to go after my hoarse gravely voice - another result of VCD. So, as soon as I get my breathing under control, we start voice lessons. Oh boy. I feel like Eliza Dolittle taking elocution lessons from Henry Higgins.

You know, if you'd asked me three weeks ago to guess who the next addition to my medical team would be, a speech therapist would have been pretty much at the bottom of the list.

The Slat Rat Defines Stupidity

Thu, 03 Feb 2005 03:44:20 GMT

Four weeks ago, I had my first every food allergy reaction. The Slat Rat physiology appeared to have an issue with Thai red chili sauce. Two weeks ago, I had blood drawn to test for reactions to all of the ingredients in the chili sauce. The test results are not yet back.

To be honest, I really didn't think that I truly had an allergic reaction to red chili peppers. I mean - how ridiculous is that - to develop my very first food allergy at the age of 46 - and to red chili peppers. Geez...

So, I basically had forgotten about the whole chili pepper menance. Tonight, I made my wonderful 3 bean enchiladas - which of course, require chili powder. Now, I'm not a huge chili powder fan - however, I use Dean and DeLuca's truly amazing chili powder - that stuff is wonderful. You can see where this story is leading.

As were finishing up, Peter says "Gee, you have a rash on your neck. You must be reacting to your earrings." I just went "Hmmmmm". I don't react to my earrings - they're sterling silver. So, I trotted upstairs and looked in the mirror and sure enough, I was breaking out in a rash on my face and neck.

Nothing life threatening or anything. But I think we've proved, that yes indeedy, I do have an allergy to red chili peppers. The bummer is that we have a whole platter of enchiladas. Those were going to be my lunch for the next few days. sigh...

Improvement on the Flu Front

Tue, 28 Dec 2004 04:24:17 GMT

I made it in to see the doc today. Actually, I saw the naturopath that works with my doc. After much conversation and a physical examination he decided and I agreed that my issue was probably viral instead of bacterial. I was definitely morose by that point - my lymph nodes and ears were sooooo sore. I was hoping for a bacterial infection so that we could do antibiotics and I'd start to feel better.

But my naturopath recommended two herbal supplements, IP6 (not be confused with Internet Protocol version 6) and Pycnogenol. As always on the immune system herbal front, I was somewhat skeptical. I've had zero success with supplements that are supposed to boost ones immune system. My immune system usually refuses to budge from the depths in which it normally hangs out. But I carefully read the ingrediants of both supplements and decided to take a flyer. I mean, how could brown rice (IP6) and pine tree (pycongenol) extracts possibly be harmful?

When I got home, I took my usual four ibuprofen tablets - my glands were so sore I couldn't swallow. Advil has been the only thing that's provided any relief - well except for frozen margaritas. I also took two IP6 tablets.

Three hours later - wowza!!!!! My head and neck haven't felt this good since before Thursday. Yipeee. I think we may be on to something with this IP6 stuff!

I should be able to go back to work tomorrow.

Ah - the Emerald City

Fri, 10 Sep 2004 03:48:31 GMT

The Ski Boy flew into Seattle from Houston this evening. He dropped his bags here at the hotel and then we caught cab up to the Wild Ginger for dinner.

I'm experiencing somewhat of a relapse on whatever weird illness thing I have going on. So, I didn't have a whole lot of oomph this evening. As such, Wild Ginger was the perfect choice. Fabulous, exquisite Asian Fusian food and my favorite Lower 48 beer: Mac and Jack's African Amber. Whatever odd illness thing I have has resulted in a major beer craving. No interest in wine. But boy, do I want beer!

The Sick Slat Rat

Sat, 28 Aug 2004 00:33:10 GMT

Yesterday afternoon - as the storm clouds were gathering - I started to feel pretty grim. Just over-the-top weak and wobbly. I came home at 4:00 PM and crawled into bed.

I still felt totally grim this morning and figured that a doctor's visit was probably called for. Fortunately, my doc could fit me in. So, I strapped a snorkle on Henry II and we motored over the doctor's office.

After much discussion, poking, prodding, etc., my doctor feels that I may have some sort of viral thing like a mono relapse or CMV. Or, I could be in the midst of a major Chronic Fatigue Syndrome immune system collapse. I don't have any normal flu like symptoms - just extreme weakness and fatigue. Basically that good ol' mono feeling.

So, doctor's orders are to just rest for several days and we'll wait to see what the blood tests show.

Just in case you were wondering - the flu totally blows...

Wed, 23 Jun 2004 02:33:44 GMT

I'll tell you what totally sucks - to be visited by the flu on a hot sunny Solstice weekend.

I started not feeling well Saturday evening and by Sunday, I had a temperature (not super high but certainly in the annoying range) and the joy of complete all over body aches, headache, nausea, and fatigue. My Sunday was pretty much nailed. I went to work yesterday but was still pretty ughish.

It's finally on its way out today - still some residual aches but nothing like the past few days. So, I can get back out and enjoy the sun.

The Slat Rat on the Road

Wed, 19 May 2004 03:41:48 GMT

I am happily ensconced at the Little America Hotel in Salt Lake. Dad clued me to the Little America a few years ago - Dad always could unearth the great classic hotels that ooze character.

Tomorrow is my bi-annual appointment with my CFS doc - Lucinda Bateman. This should be an interesting visit. I'm doing well. But I want to do better. I want to be an athlete again.

Anyhoo, after my Dr. Bateman appointment, I head off to Grand Junction where a cosmic confluence occurs - the Ski Boy flies in on the red-eye, I arrive at 9:20 PM and we're all set for my little sister, Songya's High School graduation Thursday morning (at 8:00 AM!).

This should be a lot of fun!

TGIF

Fri, 16 Apr 2004 19:53:45 GMT

I'm pretty much road kill today - a long long long week culminating in the usual Third Thursday of the Month board meetings. I adjourned the Government Hill Community Council meeting at 9:20 PM and then staggered home.

I crawled out of bed today for a 7:30 AM conference call and then crawled right back in bed. There's not much stuffing left in the ol' Slat Rat. But I am going to stagger in to work for the afternoon.

I don't think I'm getting out of bed this weekend. Well, except for Ballet Argentino tonight, the Catholic Social Services Charity Ball tomorrow night, and bookclub Sunday night (thankfully, not at our house).

BUT, other than that, I'm not getting out of bed.

Alaska in Sports Illustrated

Fri, 05 Mar 2004 03:56:48 GMT

Sports Illustrated's 50 States in 50 Weeks series spotlights Alaska this week. It's Alaska week in SI for a very specific reason - it's Iditarod week - the ceremonial race start is this Saturday here in Anchorage. The real start is Sunday in Willow.

SI's Alaska factoids are pretty fun - they did a good job. And, Trajan Langdon, the nephew of my very good buddy, Mary, is SI's special guest Alaska columnist.

It is so true - Alaska is a very small town. There is a max of two degrees of separation between all of us. Everyone knows everyone else - or if they don't, they know someone who does.

Moose Ski Trail Divots

Thu, 05 Feb 2004 04:49:54 GMT

It has warmed up considerably - it is now 25 degrees F - positively balmy. Because it's so tropical, the x-c ski trail beckons. I can't ski very much at all, but I discovered this Sunday that I can ski a little bit. So I went out for a putzy little ski this evening. It was delightful - warm, dark, but cloudy so the city lights reflected off the clouds - you could read a newspaper in the ambient light.

Anyhoo, the coastal trail was in pretty good shape and the classical tracks weren't bad at all. Except for a 1/4 mile section where Bullwinkle decided to walk. The moose had the entire groomed trail upon which to trod. But for some reason he decided to clomp right down the classical tracks. So the classical tracks were pockmarked and clumpy. And then there was the mascerated section where our moose buddy appears to have performed the Mexican Hat Dance....

Visit to the Vampire

Thu, 05 Feb 2004 04:37:57 GMT

I saw my GP (General Practioner doc) last week - sort of a three month "how I am doing on the CFS/Fibro front" level check. As always, some new issues have cropped up - which of course has resulted in a whole new set of blood tests.

This morning, I finally made it in to the lab for the blood draw. I had to maneuver around both the lab's schedule for the NK function test and fasting which means early morning blood draw which means no early morning meetings on my calendar.

Anyhoo, early this morning, I walked into the little blood drawing cubicle and awaiting me was a significant pile of vials - twelve total! This is a personal Slat Rat record - twelve vials of blood in one draw! Afterwards, I sort of wobbled out of the cubbie...

Sun, 25 Jan 2004 05:37:49 GMT

I've been an a major outdoor reading kick for the past month. It all started with our bookclub's January selection, Into Thin Air by Jon Krakauer, a senior contributor to Outside Magazine. Into Thin Air is Krakauer's first person account of the 1996 Everest disaster. I'd read the book several years ago, but decided to re-read it - I had forgotten many of the key events.

Within the climbing world (and Alaska, and our bookclub), it is an extremely controversial book. But, I was totally hooked when I read it a second time. I got re-bit hard and deeply by the outdoors bug - and particularly by the extreme outdoors bug.

So, within quick succession I've read High Exposure: An Enduring Passion for Everest and Unforgiving Places by David Breashears, the leader of 1996 IMAX Everest filming expedition that was on the mountain when the diaster occured. A wonderful book that charts Breashears life and his climbing passion.

Next was Himalyan Quest: Ed Viesturs on the 8,000 Meter Giants, a National Geographic book by Ed Viesturs. A marvelous climbing book with amazing photographs.

Currently, I'm reading Rowing to Latitude: Journeys Along the Arctic's Edge by Jill Fredston - an Alaskan. I love this book - Jill does a magnificient job of capturing what wild Alaska and the Arctic is all about. This book is also a lot of fun for me because I know several of the people she writes about.

I want to be able to do physical things again. I want to ski. I want to hike. I want to road and mountain bike. I want to start climbing. I want to re-experience doing extreme physical actvities in wilderness solitude.

All of this has inspired me to take yet another run at figuring out what's wrong with me - on the health front. There are of course other issues that are beyond hope of fixing. But, I want to get past what is causing my Chronic Fatigue Syndrome. I want to be active again.

The Slat Rat Rides Again?

Mon, 12 Jan 2004 03:48:20 GMT

In a fit of, probably, stupid optimism, I bought a pair of these today.

They're waxless and not very expensive - certainly not at all like my former high performance ski purchases. All I want to do is putter a little bit on the Coastal Trail. It's killing me not to be able to ski. So, hopefully, these guys will help me scoot around just a smidge and not overdo it.

It is always fun to get new skis!

Erp

Tue, 30 Dec 2003 04:30:23 GMT

So, this evening, all this bronchial coughing in combination with some beer and pizza has led to a wicked form of hiccuping for which I am well known: the bone rattling hiccup followed by the ceiling rattling belch. An amazing combination that is recognized by all who have witnessed it as a true force of nature.

Fortunately there is a cure - an old Ski Boy remedy. The hiccupper puts one finger into each ear. Another person fills up a glass with water and then helps the hiccupper, with the fingers in the ears, drink the water down. It works every time.

Croak

Tue, 23 Dec 2003 06:38:04 GMT

I have completely lost my voice. I really can't even muster up a croak.

And of course, Peter and I had a holiday dinner party for eleven friends tonight. The party was actually pretty fabulous and I managed to hold my own with a lot of emphatic whispering and elaborate charades. But what stupid timing on my part - losing one's voice three days before Christmas is totally lame

However, I attempted to lube up my throat with several generous applications of of Cosentino's Cigar Zin. Man - is that one smooth wine. It was very popular with our guests - we went through three bottles of it..