Wednesday, May 29, 2013
Just what I feel like.
Just what I'm doing.
I have been dealing with the puzzle of a thyroid that's attacking itself, nodules on my thyroid and a lovely flare that has knocked me on my fanny.
I can't seem to keep my eyes open. I've been sleeping 12-14 hours a day. Normally, I wouldn't mind that but it's been forced on me. My skin looks like alligator skin and it has started to itch. There's a little difficulty swallowing but the one doctor I went to "isn't real concerned about it."
ISN'T REAL CONCERNED?
I feel like crap.
Let me rephrase.
I feel like something that crap brought in.
So let's examine the evidence.
I'm real tired. I'm tired enough that I can fall asleep mid-sentence.
I'm moving so slow that a slug moves at mach speed.
I feel like I'm going through menopause again. One minute I'm hot and the next I'm cold.
I'm going through lotion like crazy but still have that alligator look.
I'm gaining weight. (THAT IS BAD. I CAN DEAL WITH THE REST BUT THIS????)
I ache more than usual.
My skin is peeling underneath my nails.
My hair is shedding worse than Buster's.
I'm craving carbs. (Ok.....so what??)
I can't remember my own name at times.
I feel like a vampire because I hate the light.
All of this points to problems with the thyroid. This brings me to an interesting topic that I'll write when I can pick my head up. The symptoms of thyroid problems mimick Fibromyalgia.
So I'll write....
What came first the chicken or the egg?
Thyroid of Fibro??
I'm going back to bed.
Monday, May 13, 2013
When people say,
"I know how you feel"
"I get tired too"
Give them my shoes for awhile.
How does your day start out? If it's anything like mine you're hobbling to the kitchen feeling like the tin man in bad need of an oil can.
I'm on a search for caffeine.
I need coffee and as bad as it is I have a diet coke chaser. I've tried giving it up cold turkey but I don't like plain water. I will say that I've cut the diet cokes WAAAAY DOWN but first thing in the morning....well, so far it ain't happenin'.
Then I slug down the medications that start the day. I take my thyroid medication, supplements and pain medication. This will get me through until noon. Fibromyalgia combined with hypothyroidism and a dose of autoimmune thyroiditis keeps you feeling like you're running on empty. Energy is at a minimum and you're just bone tired.
Tired isn't the right word and I can't think of one that adequately describes it.
As time goes on my patience level with this "syndrome" has dropped to a new low. We went to Hawaii and the beach is the place where I find my peace. I usually don't like to sit around doing nothing but put me on a beach and I'm one happy camper. Going there and dealing with the plane trip and the headaches of travel was something new to me. By the time I got to the beach the pain was horrible but I was determined to put it aside and feel the peace of the water. No matter what I did or how I distracted myself finding peace was difficult.
I still felt like crapola that washed ashore.
People tell me how fortunate I am that I don't work anymore. I wish I felt fortunate. It really is tough to be in management mode on a continual basis. At times, there is frustration but along with it comes the realization that life could be a lot worse. We can smile but that smile sometimes masks a great deal of pain. The smile also conveys a sense of well-being. Funny, isn't it? Well-being; that isn't even close to the real meaning of the word.
We manage a myriad of symptoms that change on a daily basis.
There are so many symptoms that plague us. We even ask ourselves.....is this the fibromyalgia or something else? I get tired of explaining that another ugly symptom has reared its ugly head. I am lucky in one respect. I've got an incredible doctor that describes himself as "nosy." He doesn't brush me off and he sincerely cares about how I feel. We try to rein in the beast but there is a tiny place that houses the fear that every twinge and twitch brings.
Trust me, it costs a lot to be sick.
Insurance or not....fibromyalgia is expensive. The management isn't cheap and it seems like something is always out of whack. Now, it's my thyroid that is dealing me fits. The thyroiditis is flaring up and my internal thermostat is fluctuating like crazy. I can't sleep, my skin is dry and I get hot and cold. They found a nodule on my thyroid and I have to have that checked out. What comes next?
The days of running around like I don't have a care are history.
Everything that used to be precious to me has faded into the background. I had boundless energy, thrived on stress that came with my job, working in sales and I had a memory that bordered on eidetic. There was a sense of pride in myself and my abilities that are a vague recollection. Sometimes I don't recognize the person I've become......the person that can't remember why she walked into the room. The fibro fog......it burns off but when it hits it's thick and it envelops your world in a cold and thick blanket.
Back to the symptoms.
Pain, fatigue, muscle spasms, insomnia, stiffness when you stay in one position too long, difficulty remembering or concentrating and numbness and tingling. Then there's the sensitivity to odors, light, chemicals, noise, medications and heat or cold. They symptoms that I mentioned are just the top ones. There are MANY MORE. These symptoms can intensify due to time of day, exertion, hormonal fluctuations or even the weather. Is it any wonder they can't get a handle on this?
So here's what we feel like
here's what we were.
and here's what we will be
It's Fibromyalgia awareness month.
Try to look past our smile.
We're trying our best.
There is no cure.
Sometimes we're not believed.
And that's just the good stuff.
Wednesday, May 1, 2013
I really tried.
I can tell you it didn't work.
But I tried real hard.
Have you just ever felt so lousy that thinking hurt? I was getting ready to go on vacation and I was stressed.
When did packing a couple of suitcases become so stressful? I couldn't decide what to take and it wasn't the clothes. It was taking the crap that I use to manage pain and I was terrified that I'd be curled up in bed in paradise.
Forget the medication. I had to take a tens unit with extra pads for the electrodes. I took aromatherapy bottles. Did you know you had to advise the TSA that all these items you put in a Ziploc bag are medically necessary? Just as a shout out to the TSA, they were wonderful and took a look at me and offered to help me through the screening when it looked like I was going to fall over.
When I got on the airplane I was prepared. I had taken pain medication and half a muscle relaxer. I was concerned because I can't sit longer than 20 minutes and even that is a stretch. I had my iPad and, mentally, I was ready. I really appreciated the bulkhead because I could stretch my legs straight out and put them on the wall in front of me. I plugged in my earphones and turned on the tens unit and, Hawaii, here I come!
Not so fast.
I was good for about 2 hours. That's when I had to start popping the medication. I stood up. I walked down the aisle. I meditated. I can honestly say that I was in a good frame of mind but my body was in another picture altogether.
Let's say I made one tiny mistake.
We live in a society that is a tad paranoid.....and rightfully so. There are some crazy people out there right now. We do have to become more aware and speak up if something doesn't look right, however, I didn't take into account what electrodes fastened to my body might look like with a small device that looks like a remote detonator.
More than one head looked at the wires sticking out of my pockets and one motioned to the flight attendant. I was waiting for the lavatory and she came over to me and told me the story. We kind of got a kick out of it but, one the other hand, I thought it was admirable. This is a very good thing......watch and speak up.....no matter what.
Anyway, by the time I landed I was ready to hit the beach. No matter what frame of mind I was in the pain was shooting down my legs. I tried to ignore it and think myself out of it but to no avail.
Pain is pain.
I couldn't even sing Leaving on a Jet Plane to get myself out of it.
But there is a good side to this.
I didn't get arrested when we landed.