Dealing with the effects of Fibromyalgia and Chronic Fatigue Syndrome

A few weeks ago my wife was diagnosed with Fibromyalgia. Fibromyalgia is a very lifestyle disturbing illness that is very difficult to diagnose and ever more difficult to treat. In a nutshell:

The defining symptoms of fibromyalgia are chronic, widespread pain and tenderness to light touch. Other symptoms can include moderate to severe fatigue, a heightened and painful response to gentle touch (allodynia), needle-like tingling of the skin, muscle aches, prolonged muscle spasms, weakness in the limbs, nerve pain, functional bowel disturbances, and chronic sleep disturbances. Sleep disturbances may be related to a phenomenon called alpha-delta sleep, a condition in which deep sleep (associated with delta waves) is frequently interrupted by bursts of alpha waves, which normally occur during wakefulness. Slow-wave sleep is often dramatically reduced.

Many patients experience cognitive dysfunction (known as “brain fog” or “fibrofog”), which may be characterized by impaired concentration, problems with short and long-term memory, short-term memory consolidation, genitourinary symptoms and interstitial cystitis, dermatological disorders, headaches, myoclonic twitches, and symptomatic hypoglycemia. Although fibromyalgia is classified based on the presence of chronic widespread pain, pain may also be localized in areas such as the shoulders, neck, low back, hips, or other areas. Many sufferers also experience varying degrees of facial pain and have high rates of comorbid temporomandibular joint disorder. Not all patients have all symptoms.

Wikipedia

At first I thought the doctor was spot on because my wife has exhibited many of those symptoms in the past eight months that she has been ill. There were a few inconsistencies with the diagnosis in my opinion, but for the most part all of the things that are encompassed by fibromyalgia were apparent in my wife’s lack of health for the last eight months.

Then a few days ago my wife found Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS, or CFS for short) and began to look closer at that. Now I have read about CFS. In fact, when my wife first got sick back in November I read I about CFS and thought that the symptoms seemed eerily similar to what she was experiencing. I even suggested it to my wife’s doctor in January and, as of about a month ago, the only thing related to it that was ever put in my wife’s chart was “fatigue”. Not CFS, just fatigue.

Looking closer as CFS you’ll find:

CFIDS is characterized by incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina) and problems with concentration and short-term memory. It is also accompanied by flu-like symptoms such as pain in the joints and muscles, unrefreshing sleep, tender lymph nodes, sore throat and headache. A distinctive characteristic of the illness is post-exertional malaise, a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period.

Additional symptoms are reported by people with CFIDS (PWCs) such as word-finding difficulties, inability to comprehend/retain what is read, inability to calculate numbers and impairment of speech and/or reasoning. PWCs may also have visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescription changes); psychological problems (depression, irritability, anxiety, panic attacks, personality changes, mood swings); chills and night sweats; shortness of breath; dizziness and balance problems; sensitivity to heat and/or cold; alcohol intolerance; irregular heartbeat; irritable bowel (abdominal pain, diarrhea, constipation, intestinal gas); low-grade fever or low body temperature; numbness, tingling and/or burning sensations in the face or extremities; dryness of the mouth and eyes (sicca syndrome); gynecological problems including PMS and endometriosis; chest pains; rashes; ringing in the ears (tinnitus); allergies and sensitivities to noise/sound, odors, chemicals and medications; weight changes without changes in diet; light-headedness; mental fogginess; fainting; muscle twitching; and seizures.

CFIDS Association of America

The more I look at CFS the more I think that this is where the problem lies. I think my wife has been stricken by this illness more than I am thinking fibromyalgia. Here is my thought process:

CFS and Fibromyalgia and how they stack up to my wife
  CFS Fibromyalgia My Wife
Data for this table gathered from CFIDS and Wikipedia
Incapacitating Fatigue X X X
Problems W/concentration & Short-term Memory X X X
Flu-like Symptoms X X X
Unrefreshing Sleep X X X
Tender Lymph Nodes X X X
Sore Throat X
Headache X X X
Post-exertional Malaise X X
Inability To Comprehend/retain What Is Read X X
Inability To Calculate Numbers X X
Impairment Of Speech And/or Reasoning X
Visual Disturbances X X
Depression X X X
Irritability X X X
Anxiety X X X
Panic Attacks X X X
Personality Changes X X
Mood Swings X X
Chills And Night Sweats X X
Shortness Of Breath X X
Dizziness And Balance Problems X X X
Sensitivity To Heat And/or Cold X
Alcohol Intolerance X
Irregular Heartbeat X X
Irritable Bowel X X X
Low-grade Fever Or Low Body Temperature X X
Numbness, Tingling And/or Burning Sensations In The Face Or Extremities X X
Dryness Of The Mouth And Eyes X X
Gynecological Problems Including PMS And Endometriosis X X
Chest Pains X
Rashes X
Ringing In The Ears X
Allergies X X
Sensitivities To Noise/sound, Odors, Chemicals And Medications X X
Weight Changes Without Changes In Diet X X
Light-headedness X X
Mental Fogginess X X X
Fainting X
Muscle Twitching X
Seizures X

If you look closely you can see that many of the symptoms Sandi exhibits are found in CFS. And while the fibromyalgia camp still carries with it a heavy list of things that suck, Sandi is experiencing more of the CFS related issues than the fibromyalgia ones.

This leads me to think the doctors have misdiagnosed her. Which means they are treating something that is not what she has. Which means the chances of her improving her health are pretty much crap. Which means that our family is going to continue to go through hell daily until something can be done.

The most daunting thing about CFS, as I continue to study it, is the insanely long recovery period. It is one in which people with CFS may never actually fully recover. And in general that period is between two and five years. How badly does that suck to be the poor soul with CFS? Living, day in and day out like you have just gotten run over by a train and knowing that you are going to be run over again tomorrow as soon as you wake up, and then again the next day, and again the next, and so on. For years.

I really feel a great deal of sympathy for my wife right now because she is in a place that no one should ever have to be. Her life is very hard right now and as such, the lives of her family members are very hard right now. But praise God, there are people that are willing to help us and many have already helped us.

I am just trying to wade through the stuff that I have take care of now that my wife is, in effect, incapacitated. But that will be for tomorrow’s post I think, one in which I will call out for help from single parents that are trying to raise kids, take care of the house and take care of the bills.

That ought to be fun.

Happy Birthday Aaron

A letter, of sorts, to my son:

So this morning, at 7:42 AM, you turned three. That is huge. It is like an entire 1 more than 2. You are all growed up, at least as far as a three year old can be, and are all kinds of big boy now. Yet is still feels like just a few days ago that you were born.

Today was a weird but special day for you. Through an odd scheduling snafu mom scheduled a day out with Yolanda today. That meant that you, me and all the girls would be home today while mom was out wine tasting. Except, at the very last minute this morning your momma decided that she was not healthy enough to drive herself to Millbrae so she asked me to take her. Which meant all of us were going for an early morning drive this morning.

Momma threw you all in the truck (figuratively of course) and we headed to Millbrae. We dropped mom off and Greg invited us over to his house for breakfast (actually, he invited us out to breakfast but since you and your sisters were hastily rushed out of the house this morning all of you were in your jammies and none of you had shoes). Breakfast was awesome and you and Preston had a great time playing around the large open living room at their house. We stayed there for a good while and finally got home around 1:15.

About 15 minutes later auntie Katie showed up to wish you a happy birthday and she ended up treating us to lunch. We came home, ate, talked, ate some more, played and ate some more. Then Auntie Katie had to go because we had to go get some stuff for your cake tonight. Since mom was not here all day she wanted to be able to do cake with you tonight. But we needed a cake and some toppers to go on it. Which is why we went out to get that stuff.

We got home right around 4:30 or so. I put a movie on for you guys while I got the coals ready for steaks. I got dishes washed and everything ready to cook and got to it. While I was cooking you and Alaynah were playing out in the yard. Playtime seemed to go on forever for you two, but it actually ended at about 6:00 when we had dinner. A little while later mom got home.

Just after that we had your rainbow cake with Diego toppers and “A” and “J” candles. It was awesome. We got you wired on all sorts of buttercream frosting then turned you lose on the front room to open your presents. You got a pretty big kick out of most of them, playing with the little spirally Go Diego Go car slide. In fact, you played with that up until it was bedtime.

Which is why I am writing this so late. You see, in the hubbub of what was your birthday I had no time at all to even tell you happy birthday here. So I am taking this time, after you are asleep and after I have taken a shower (because Lord knows I needed one). I just want to tell you again son… Happy birthday. I love you and I am glad that God chose to bless me with your existence in our family.

You are an amazing kid. You learn incredibly fast, you are very smary naturally and you are all boy. I love watching your maleness come screaming out of you as you develop into a little boy. You are already well on you way to that and I am certainly glad that I get to be a part of that with you. So today son, as you sleep off the effects of a very busy Sunday, I just want to let you know again how much I love you and how glad I am that you had a happy birthday.

The front fell off

The other day I received an email that detailed how similar politicians are no matter where around the world they may be. I thought that certainly Americans had the upper hand when it came to our elected leaders being political. I may have been wrong.

It seems that Senator Bob Collins from Australia is the example to follow when being political. He recently gave an interview regarding a tanker ship that experience a horrific accident at sea. The accident, one in which the front of the ship detached allowing 20 million tons of crude oil to spill into the sea, happened near Australia.

You gotta see this…

Amazing, isn’t it? I have yet to see an American politician pull something like off.

Side bar: If you hadn’t guessed while watching the clip, it is a satire by John Clarke and Bryan Dawe, an Australian comedic duo that have been doing satires of weekly events, called the 7.30 report, for some time now. You gotta admit, they are darn funny.

Air quality you can see and taste

Yesterday, as I left work, I couldn’t help but notice how gray the air was. It had been smoky like this for a while, but not this bad. In fact, today it was so bad that it was not only difficult to see, it was actually a little weird to breath.

I could actually taste the air around me. It tasted chalky, smoky and dusty. My throat felt dirty and scratchy very quickly and my nose felt like I had been cleaning the garage all afternoon. When I opened my mouth to breath I could almost feel the air filling my mouth with particulates. It was a little disturbing to be honest.

Given the insane number of fires that the state of California is experiencing at the moment it is no wonder that our air is as unhealthy as it is. There are, from last I heard, about 1,000 fires burning statewide which have consumed about 20,000 acres of property. That is a lot of burning land.

Throw in the winds coming from the North, where some of the most intense wildfires are taking place and you can see that the recipe for tasty, smoky, charred air is well positioned to bring itself to everyone’s door.

An example of what I am talking about can be seen in the following image, taken as I walked out of my office yesterday evening. It is a photo of the Concord airport airstrip, which is usually plainly visible. Additionally, the trees behind the airfield are usually well within view, not to mention the huge range of hills just behind it.

Buchanon Field, the Concord Airport

On my drive home I noticed that something seemed to be terribly wrong with my view. The more I thought about it the more I realized, it was that the mountains that are usually so majestically plastered against the skyline were absolutely non existent in the current airspace. The sky looked like a foggy winter morning when it was indeed a warm summer evening.

My heart, thoughts and prayers go out to the people affected by these blazes. I am also praying for all of the firefighters that are upholding their oath to protect the public and are putting theirs lives at risk to make sure people are safe.

These are tough times for California. By most accounts we are entering into fire season about three months early and already we are experience more fires than we usually do in an entire season. Please keep the state of California in your thoughts while the brave men and women that are battling these fires continue to protect us even at the cost of the very lives.

More Pictures

On the way home, Southbound 680 in North Walnut Creek
Southbound 680 just North of Walnut Creek

More driving… I can’t help but notice no mountains
On my drive home

There should be more greens and blues in this picture
Man that is some gray sky

Usually at this point I would be seeing some hillside
Driving home

Still not a hillside to be seen outside of the very close one here
The Orinda and Lafayette area

Posting YouTube videos to WordPress in valid XHTML

I realized in my quest to build a new theme for my blog that as I did validation testing on the markup that it didn’t validate (against the XHTML 1 Strict DTD – because I am a little Geek OCD when it comes to my markup). After a bit of inspection I realized that it was the stupid YouTube code that I copied from their site that was throwing off my validation.

Apparently YouTube thinks that everyone that puts their code into a site writes their markup under the transitional DTD. How stupid is that? A la:

<object width="425" height="344">
<param name="movie" value="http://www.youtube.com/v/Rw8gE3lnpLQ&hl=en"></param>
<embed src="http://www.youtube.com/v/Rw8gE3lnpLQ&hl=en" type="application/x-shockwave-flash" width="425" height="344"></embed>
</object>

Well I wasn’t about to be told that I cannot have valid XHTML in my code. After all, I took the time to make sure the core code was valid, why should I tolerate invalid markup injected into my code by YouTube or WordPress or anyone? Exactly.

My solution? Simple. Google.

And Google, being the friend to me that is always has been, helped me right from the go. It took me Valid XHTML to Embed a YouTube Video. After reading some of the goodness on this tutorial I read the comments. And lo and behold, I ran across another tidbit of goodness that all bloggers that are into valid XHTML output should look at.

The Valid XHTML YouTube embed code generator – Online tool is totally awesome. It is fast, clean and reliable. I have already used it twice and will more than likely be using for every video embed I post until I want (bad enough) to write a WordPress plugin. Until then, if you are at all interested in keeping your XHTML template standards compliant, hit this little converter up because it rocks.

And just so I can prove myself to not be a liar… remember that little YouTube generated code snippet above? This is how it comes out afterward:

<object type="application/x-shockwave-flash" style="width:425px; height:344px;" data="http://www.youtube.com/v/Rw8gE3lnpLQ">
<param name="movie" value="http://www.youtube.com/v/Rw8gE3lnpLQ" />
</object>
<div style="font-size: 0.8em">
<a href="http://www.tools4noobs.com/online_tools/youtube_xhtml/">Get your own valid XHTML YouTube embed code</a>
</div>

Yeah, I thought it was great too. Enjoy.

Making navigation menus using CSS

A recent Sitepoint article by Rachel Andrews, Director of edgeofmyseat.com, outlined some pretty Nifty Navigation Tricks Using CSS. Anyone that wants to learn to make some pretty cool tabbed, button or vertical bar navigation lists should give this article a read through. It is a pretty well written article and has a great deal of code that can be easily copied and pasted for your development pleasure.

For four pages it reads very fast. It is easy to follow and the examples are practical. I wish there were some working samples of the code, but still, it is a good teaching tool for those that have yet to dive into CSS based navigation lists (and you should get into it, as CSS is designed for such things).

For those that want a huge assortment of samples, code and really cool lessons, check out Stu Nicholls’ CSS Play. This site is an amazing reference for learning the art of cross-browser compatible CSS. There are menus, layouts and much more available to learn from and even use, in many cases without even a link back to him, though it is always a good idea to give credit where credit is due.

So if you are in need of a little CSS learning fix, hit these references up. You will enjoy them and, in the case of Stu Nicholls, may even make them part of your normal daily web development toolset.

For those that missed out on the World of Warcraft WOWness

There are many a wife that has been widowed by the World of Warcraft craze that has swept the world. And plenty of men, women and children have fallen victim to the craziness of the addiction to this violent, expensive, wasteland generating game.

However there is an entire class of people that are being overlooked in our zeal to cast judgment on the yayhoos that have gone WoW-stupid. These folks are largely overlooked because they are the ones that missed the boat. That’s right, these poor people have missed the hit parade of early adopters and are now forced to work twice as hard, some times three times as hard, to accumulate the WoW wealth needed to really impress the female gnomes and imps trolling about the WoW.

But I have good news for these people. Blizzard Entertainment, the same folks that brought you World of Warcraft have recently announced plans for World of World of Warcraft, a game that allows those that missed the first rush of WoW freakiness to pass them by to easily integrate themselves into that world by gaming themselves into it.

Have a look:

So it appears that you can now put yourself into the game even if you are not in the game. How cool is that? No more being an outcast, outsider or freak that doesn’t know what a level 3 gnome rogue is. No way Jose. Now, you can be one of the cool folks associated with World of Warcraft, in your own World of World of Warcraft.

Now go play.

Real life LOLCats – only in San Francisco

I never tire of LOLCats. Seriously, never. I can literally sit for hours and be amused by their silly antics and wonderful captions.

So imagine my surprise when one of them came up missing. A real life lolcat, missing in SF.

Anyone looking for a lolcat?

I almost wanted to hit the city just to look for it. I would stop, of course, at a burger joint to pick up a cheezburger before beginning my quest to find the lil lol. And I would celebrate mightily after having caught it as I would have been a guy that actually caught a real life, living LOLCat.

I can haz lolcat?

Expensive lessons are the worst lessons

I am a huge proponent of learning. I love learning. I believe that the only way to grow effectively in your life is to allow yourself to learn regularly.

But there are some lessons that, when you learn them, you almost wish you could go back and try to learn what you are learning a different way. Lessons like these make me not want to learn so much as get mad and cuss loudly.

Today, while I was in the shower, I noticed the shower started to back up. I didn’t worry about it too much seeing as this has had happened before and had actually corrected itself when it happened last time. So I got out of the shower and went about the rest of my very busy day without giving it much thought.

Later on in the day I checked on the shower and the water was still there. Plunging the drain was totally fruitless so I decided I would try some Drano gel stuff to try to break through the clog. So I headed for the drano and stopped along the way to move laundry down because of the many things I had to do yesterday, laundry was a priority.

Before too long I was back in the bathroom and pouring the remainder of the half full bottle of Drano into the shower. I then went back to work for my family by getting some meat prepared for cooking. A short time later I went to check on the shower and to my surprise I found my shower drain not only not draining but to the contrary, it was spewing water like a fountain. And it was not just any water. No no. It was Drano ridden.

As I stood in awe over the mess that was unfolding in my bathroom I began to wonder how in the name of all that is good and cuddly I was going to get this thing handled. In the time it took me to think of options my bathroom had about an inch of Drano water in it and the level was rising.

After some (brief) deliberation with myself and my wife we decided that a call to the plumber was in order. Can you feel a lesson about to me learned coming on?

I called the plumber and he showed up about an hour later.

Brief sidenote: Given my wife’s distaste for people seeing our house dirty I experienced a tremendous bonus… my living room, my hallway, my laundry area, my hallway bathroom, my bedroom and my bathroom we are cleaned in the hour or so before the plumber got to my house.

After looking at my blocked up shower and running two very brief checks, he determined (and I concurred) that my entire plumbing system for my house actually leads into one pipe. At the very least, the hallway bathroom, the laundry area and my bathroom all tie into a single drain. So he gave me two options: 1) he could go up on the roof and, using his electric snake, cable the drain through the roof stock vent; or 2) he could try to cable the drain through the shower. Of the two choices, the roof cabling, he said, was the most effective.

Of course the roof cabling fix would cost $225 as opposed to the less effective shower cabling process that would cost $175. Can you hear that? It’s the sound of a lesson not being learned yet.

I gave the plumber the go ahead to get on my roof and cable the roof stock vent. 20 minutes later, as I signed the credit card charge for $225, it hit me.

Why couldn’t I head to Lowe’s or Home Depot and rent a power snake and do this myself? Did you hear that? That was the sound of an expensive lesson being learned out loud.

Once my signature was on the contract and I had the yellow copy in my hand, my plumber, Rudy, made sure to tell me that if this ever happens in the future I could save myself some pretty decent money if I just head to Home Depot and rent a power snake. Did you hear that one? That was the sound of stupidity being confirmed after an expensive lesson was just learned. Thanks Rudy, that hurt more than just a little.

On the bright side I now know that if I ever have 20 pounds of hair clogging my shower, or for some reason my washer machine doesn’t drain, I don’t have to spend $200 on a 20 minute plumb job. I can just go to Lowe’s and rent a power snake for $40 and be on the road to clean showering once again.

Lesson learned. Just wish it was learned a little cheaper.

How would improve the look of this site?

I have made a good many changes to this theme in the few days that it has been alive. Since its launch a few day ago I have asked for critiques and constructive criticism from the PHP Developers Network. However, I think it might be better to ask your opinion as well seeing you might not visit the PHPDN community (tsk, tsk).

So I ask you, dear reader, if you were going to improve upon the way this theme appears, what would you do? What changes would you make if you were the designer?

I appreciate any responses you provide. I am looking forward to making this theme a usable, intuitive, clean interface and could use any and all feedback presented.

Thanks.