I've been one poor correspondent, and I've been too, too hard to find But it doesn't mean you ain't been on my mind

OK, way too much going on. Guess what? I have polymyalgia rheumatica ON TOP OF fibromyalgia! Yippee!! The good news is, PMR is treatable. Prednisone time, more soon.

Saw new rheumatologist

Guess what, another full battery of tests, but said, surprise surprise, probably fibromyalgia!


The tests make sense. He wants to rule out other causes, perhaps psoriatic arthritis or other auto-immune conditions. Saw his recs pending tests, Cymbalta--any thoughts?

Hockey game was GREAT!

I stayed awake, and (gasp) actually had A beer!

Out and about

Wish me luck. First big outing in a while, going w/my son to minor league hockey. Have a "designated driver," not for a few cold beers, but because of fatigue!

One pill makes you larger, and one pill makes you small

And one pill keeps your energy up during the day and won't let you sleep at night. Another eases the pain but has overpowering side effects, shall we say discreetly, upstairs? 'Tis an adventure.


I am starting a journal to track what I do/how I feel on a daily basis, anecdotal evidence for sure, but hoping to see what works and what doesn't.

I gotta feeling that tonight's gonna be a good night...

Well, actually I don't, but I do know that today has been a VERY good day, felt fairly normal and energy decent.

Fade to black...

Not even 6 PM and I'm exhausted, fading fast. Fading...


"All right,' said the Cat; and this time it vanished quite slowly, beginning with the end of the tail, and ending with the grin, which remained some time after the rest of it had gone. `Well! I've often seen a cat without a grin,' thought Alice; `but a grin without a cat! It's the most curious thing I ever saw in my life!'

Spraying to all fields

I keep wondering if "it" was the knee surgery this summer, or the resulting infection, or maybe my first flu shot ever? Or maybe there is no "it?"


I have taken Concerta for years for ADD with no ill effects. Take it now and it is a ticket to the all-night awake-a-thon!

Don't Let Me Be Lonely Tonight

I'm not telling you folks anything you don't know, but for me, a huge adjustment for me has been the isolating aspect of it. Staying home while the family goes off to see a musical, out to see a movie when I'm just too tired to go. Hard to keep the spirits up!

I like dreamin'

NOT because dreamin' can make you mine (now THERE is an obscure song reference!) but because dreams = REM sleep. Dreams have been few and far between lately.


I'm making some changes. Trying to ease into sleep with some tea and some meditation. I do so enjoy a nice wine with dinner some days, but for the time being--I find I sleep better without alcohol.


Had a great Thanksgiving day, but Friday was an exhausted, painful train wreck.

Details, details

1) Had a rheumatogist recommended to me. Actually, she is the spouse of Peg's OB/Gyn. Called for an appointment, and I'm all set for the practice's first opening--IN JANUARY!!!


2) The little things. We are such creatures of habit. I have slept on my side since time immemorial, and on the left side of the bed since the 1982 nuptials. Problem--my right shoulder and hip are incredibly painful. It is VERY difficult to adapt those sleeping habits, some 30 years old, some a lifetime.

A new world's record!!!

I went to bed at 5:40 PM last night.

Thanks!

Despite hanging out with my new friend, I do have SO very much to be thankful for!

Good day sunshine!

I need to laugh, and when the sun is out 
I've got something I can laugh about 
I feel good, in a special way 
I'm in love and it's a sunny day.......


Had a great day yesterday. Very productive at work, felt pretty good, stayed up (if you're familiar with my story lately, this is HUGE news!) until 10 O'CLOCK!!


This condition is so frustrating because you can't predict your good days and bad days. I initially started thinking that hey, maybe the vitamins and supplements are working, then naturally, today I feel awful. Live, yes. Learn? Well, we'll see.

Timing is everything!

Peggy asked if I wanted to join her and her mom at our Thanksgiving Eve service, followed by a grand Lutheran tradition, PIE! It starts at 7:30, or as I call it, "midnight mass."

This I can't BEAR!

All the experts tell us to avoid stress. Therefore, I cannot watch any more Chicago Bears games!

A shoulder to cry on—unfortunately it's mine

BOTH shoulders are really hot tonight. Bad luck for a side sleeper! So tired but it just hurts too sleep right now. Odd pain in one big toe too. I am just a train wreck tonight!

I'm good enough. I'm smart enough. And doggone it, people like me!

Peggy comes home today after a week in Sweden on business. Can't wait to see her!


One thing you will learn, or know all too well already, is that fibromyalgia becomes part of your relationships, and it will necessarily change many of those relationships.


This is particularly true between spouses and partners. The partners with FMS simply cannot do all the things that keep a household and a relationship running the way they did before the syndrome came into their lives. The partner without FMS will necessarily find themselves picking up a greater share of household duties, from laundry and cleaning to the care and feeding of the other two and four legged members of the family. They may well come to resent this extra burden on their lives that are probably already overstressed. Meanwhile the partner with FMS may (I know I do) feel guilty and frustrated about the limitations they encounter.


Deal with this openly and honestly, and early in the game, before it becomes toxic. You are not less of a person or a less valuable partner because you have FMS. Your partner loves you and wants to help you through this, and be part of it with you. Convey to them that you are committed to do all that you can to make your relationship, your home and your lives together work.

Riding on the Shoulder

BOTH shoulders are very painful today, stiff, tender and difficult to move.


I am the cook in the family, and Thanksgiving has always been my Oscar night since I inherited the family mantle from my beloved father-in-law. In the Thanksgiving kitchen, I am both control freak and attention diva. GET OUT OF MY KITCHEN NOW but please, lavish me with praise!


And now, sadly, I have to admit, I just can't do it. I don't have the energy for the day, the strength to deal with the heavy lifting or the inner peace to deal with the (self-imposed perfectionist) stress. So, we are having the feast catered by a local market. Whatever fibromyalgia will mean to me and us in its totality, we definitely know that it means real and profound change.

One of the worst parts of this..

Now it's time to say good night
Good night, sleep tight
Now the sun turns out his light
Good night, sleep tight


Yes, I feel like I want to go to bed AND IT IS 4:30!!!!!!!!!

Great Stuff, a Top 10 list

What NOT to say to someone with FMS!

Thanks Heather!!

Sometimes I sits and thinks, and sometimes, I just sits

It is amazing how much time I spend sitting, either on the edge of the bed or in a chair, working up the nerve to get up because I know how much it is going to hurt.

Legal Notice

To All Those Concerned (i.e., my wife)


This condition is in no way an attempt to avoid yard work or similar household chores. I am OK with it if it turns out that way though.

Lyrica

One of very few things approved for FMS. I have heard from a couple of folks who do well with it, but I've also read nasty things about the side effects. I guess I'd give it a shot. Would love to hear from those with experience with it, good or bad.

I've had good days and bad days and goin' half-made days

Glinda asks Dorothy if she is a good witch or a bad witch. I meet each morning wondering if it is going to be a good day or a bad day.


I checked out some things on meditation from the library, and am going to try (although I think I am more Lazy Boy position than Lotus Position), adjusting my response and reaction to pain. Interesting piece in Tuesday's WSJ about the interplay between perception and pain. As one doctor says, " "I'm periodically trying to get into shape—I go to the gym and work out way too much and my muscles are really sore, but I interpret that as a positive. I'm thinking, 'I've really worked hard.' " A person with fibromyalgia might be getting similar pain signals, he says, but experience them very differently, particularly if she fears she will never get better." So I'm trying to focus on the positive.


"She said a good day ain't got no rain 
She said a bad day is when I lie in bed 
And I think of things that might have been"

To sleep, perchance to dream

Ever have a friend who was really cool to hang out with, but just TOTALLY unreliable? They were so much fun when they showed up, though, that you just learned to deal with all the times they didn't? I have one of those now, the name is Sleep.

Watch Out!!

Hmmm, really stiff neck and backing out onto a really busy street? Cowabunga!!

How's the knee?

One problem I have is around the office, when I am obviously stiff (I joke I'm not really stiff, I'm practicing my Mitt Romney impression) and limping, is that those who know about the surgery say thoughtfully, "knee still bothering you, huh?" Well.... 

What It's Like

Tired. Sore Can't sleep because I'm sore, tired because I can't sleep. Nice vicious circle. Speaking as a lawyer, I know that fibromyalgia is the darling of plaintiffs' lawyers--testimony about pain without any real medical documentation. But speaking as one who has it and lives with it, it is VERY VERY real!

My world and welcome to it!

I had a “simple” arthroscopic knee surgery this summer. Piece of cake, do it on a Friday, back to work on Monday with some physical therapy tossed in. Good as new in 3-4 weeks.

Well, I FELT GREAT a few days later, felt like a worldbeater.  But then..I started to feel terrible. Flu-like symptoms, fever, yup, an infection that went systemic.

First of all, AMAZING the response of my drs. Office. TOTAL LOCKDOWN. My initial thought, c’mon guys, I’m a lawyer. I’m not going to sue, just FIX IT!!

Then things started to happen. Pain in odd places. Hips, shoulders, I remember thinking “does every part of me have to hurt?”  From being a lifetime side sleeper where the shoulder aches to pain in the hips and the worst, the neck. What is this?

Unfortunately, it didn’t take long to figure out what it was, fibromyalgia. C’mon, only girls get this, right? (well, I do act and cook…) Not me, right?

Nope, me. No known cause, no known cure, and treatments that tend to suck. That’s for starters, will keep you posted.