Mind or Body?

What is more important to you?  You're ability to think clearly, or your ability to function physically?

This is an interesting question, with very personal implications for me.  I was born with arthritis, and am currently suffering with fibromyalgia, as well as an undifferentiated auto-immune disease.  As a result, I am taking heavy doses of two drugs; one that effects my muscles, the other my nervous system.

The combination has resulted in my ability to do physical activities I haven't ever been able to perform.  But, my ability to think clearly, and focus on the task at hand are severely impaired.  For example, my husband asked me to hold the door for him this morning. On my way, I grabbed a sweatshirt off the couch and  started putting it on, while he stood there with his hands full and his frustration growing.  Unless someone is there to force my mind back to the task at hand, I will sometimes sit in la-la land for several minutes.

But, I can walk up to 3 miles with only 1-2 small breaks.  I can ride my exercise bike for over an hour.  Sure, I'm sore afterward, but a 5, not a 10 on the pain scale.  For someone like me who has suffered with pain for her whole life, this is miraculous.

I feel like I am walking on a wobbling tightrope.  For now, I am appreciating my newly discovered physical prowess a lot.  However, I am well aware of my growing lack of mental concentration.  Like everything in life, I will need to work on my balance to keep from tipping too far in any one direction.
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9/7

Today, I walked to the bridge an back.  I rested for a while in the park, and watched the leaves blow on the breeze.  It's like they whisper to each other some secret that only trees can know.

By the time I reached my final stretch, my ankle felt like it was going to break or give out.  I could feel the bones grinding with each step I took.  But, the pain was not as excruciating as I remember before the Lyrica, and I am grateful.  Completing the walk was worth the pain.

I lifted my weights like a champ today too.  My right elbow and left wrist are sore, so I will probably take a couple more Aleves before bed.  I should buy stock in whatever company makes the darn things.  I only wish they had half the good effects of the other "lil blue pills."

I also napped like a champ today.  I didn't wake up until Dan walked in the door at 3:40.  I probably would have slept til 5 if he hadn't come home.  The meds make me tired, and combined with the exercise, I am wiped out by noon most days.

It's late so I am going to sleep.
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9/10
Today was an average day physically, but a terrible day mentally.

I walked 2.9 miles with only 2 brief rests early this morning.  I focused each step on keeping my foot straight and not dragging my heel. I sweat as much as I do on the bike when I really focus on walking correctly, and my pace slows way down. I swing my arms like my wonderful, old physical therapist Preeti, taught me.  I miss her accent, and her stern, but gentle encouragement every day.  I hate insurance companies sometimes.

I don't think others realize how hard it is to walk correctly because they have been able to do it their whole lives.  For me to not drag my foot like a gimp, takes all of my concentration and causes agonizing pain from my knee down to my ankle.  My ankle gets especially sore from trying to keep my foot straight.  It's very hard trying to reverse 32 years of allowing the disease to get the better of me.  But I am determined to win. And I am experienced at fighting through the pain with a smile on my face.  I have been doing that for 32 years, too.

This afternoon I had another embarrassing "fibro fog" moment.  Either that, or the meds are starting to really get to me again.

Here is what happened.  I got a letter from my husbands Pharmacy Benefit Management firm.  It said that I needed to renew my prior authorization for an anti-inflammatory drug I had taken a long time ago, but don't take now.  In fact, I am allergic to it.  It has sulfates in it.  However, I read the word wrong in my mind.  It said "Celebrex."  I saw "Cymbalta."

I called the number to get the prior authorization process started.  I think I even said "Celebrex" to the girl on the other line.  Still, it didn't register in my mind

Then I called my doctors office and left a message for the nurse, stating that a form would be arriving so that my yearly prior authorization for "Cymbalta" could be filled out.  The whole while, the letter with "Celebrex" clearly printed in caps, in the middle, was sitting in my lap.

To make matters worse, I called back and made an appointment for next month (when I am due to go back) so that the nurse could see I was current when she looked me up in the system.

I then called back yet again.  This time to leave another message for the nurse, telling her to look me up in the system because I had just made the appointment.  That is the anxiety disorder kicking in.  That's why I need the Cymbalta, and not a different muscle relaxer.  It helps with the anxiety, too.  Five years ago, I would have had a full-blown panic attack just from opening the letter.

The worst part is that I didn't even figure out my mistake myself.  I was talking to my husband on the phone and he said, "Are you sure it's Cymbalta and not Celebrex?"

My heart nearly stopped.  Of course, he was right.

When I called my doctor's office back for the THIRD time, to leave the message that I didn't need anything filled out after all, I felt like the biggest idiot in the world.  I mumbled my apologies to the nurse's voice-mail box, and hung up.

The lady on the other line at the Benefit Management firm was understanding,  and canceled the unnecessary prior authorization process.

When I talked to my husband again, he asked "How's my little space cadet?"  I said "fine."  I meant "mortified."  I had just spent an hour needlessly on the phone, making myself look like a fool.

I was raised to be a benefit to society, not a leach.  But how can I function normally when I can't even read a single word on a letter correctly?  I just want to bury my face in a pillow and cry.

But I won't.  Because at least now, I have an outlet for my misery.  My writing.  And, maybe someday, it will pay out more than just emotional profits. 
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 9/12

Today is an average day.  My jaw hurts, and my left elbow is throbbing, but otherwise my body is doing pretty good.  I haven't had any "space cadet" moments today, either.

I got new shoes for walking.  They have special bubbles on the bottom to help me tone my muscles.  They make my walk a lot more work, but I think that I am up for the challenge.  With winter coming, I want to gain as much strength as I can now.  I know the cold is never nice to my joints.
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9/13

Today was a great day physically.  I walked three separate times, for about 2.5-3 miles each.  My ankles and knees are a 9 out of 10 on the pain scale even after taking 4 Aleves tonight, but I feel like I am making huge progress.

I didn't do any weights, however.  My neck, especially the right, has been getting increasingly soar for the past week.  I think it is because my trigger point injections are wearing off.  I get to go back to Dr. Kelly in three weeks, though, so I will make it.  I will just have to take it easy on the arm exercises until then.

Mentally, it has been touch and go.  I have lost my water bottle at least three times since I got home from my last walk, and had a "space cadet" moment with the washing machine this morning.  I tried to put a dryer sheet in it.  Twice.  At least I didn't try to put detergent in the dryer, I guess.

I am getting more nervous about my appointment with Dr. Graham on Wednesday.  I will find out what his diagnosis is, and can then compare it to the myriad of others I have heard through the years.  I am keeping my fingers crossed, but experience has taught me not to get my hopes up.
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9/15

I just woke up.  Both of my hands are swollen like balloons.  Typing this hurts all the way up to my elbows.  My palms are as red as crayons and my jaw feels like it is on fire. I can't straighten my fingers all of the way.  I'm 32, not 92!! I hate arthritis.

I was so proud of myself yesterday.  I went to the store without Dan for the first time in months.  But even then, I found myself pushing the basket with my forearms to avoid having to use my hands.  I didn't nap because he came home early, and we went out to lunch and then to the garden.  But I was so exhausted, I passed out before 7:30.

I go to the doctor today.  Hopefully he can explain what the heck is going on with me now.  It's not fair that I try so hard, push myself to get stronger and as a result, get worse.  Oh, I didn't mention my left big toe.  I can't bend him.  He hurts like the devil.  But compared to my ping-pong paddle sized, hands, he feels like a massage.

I am going back to bed.  This is one of those days that I feel like I would have been better never waking up.
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9/17

Fall is here.  Everything hurts.  My shoulders and neck are off the pain chart.  My jaw hurts bad too, but I think it's from grinding my teeth  from the pain while I slept.  It feels like it was cemented shut and I just wrenched it open.

The doctor still doesn't understand me.  He said he could see how swollen my hands and ankle were, and how red and flaring my palms are.  But all the blood-work he has ordered so far has come back negative.  I had more blood drawn at his office, and will be going for MRI's soon.  At least I know that I am not alone.  He said 10% of the patients he sees are just like me, obviously sick but not easily categorized.

As usual, I will hang in there and act like it doesn't hurt.  I should get an Oscar nomination for my performances lately.
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9/20

Some days are better than others.  But it is the sleepless nights that are the worst.  I just had yet another one.

My hands still hurt from clapping at the Leann Rimes concert.  I don't think that normal people have sore hands two days later.  My shoulders have been popping so much, and the pain is so excruciating I just want to curl up and die.  Both of my hips feel like they are tilted at the wrong angle.  When my husband wakes up, I will have him roll me on the pilates ball.  I am really going to have to fight like a champ to get any exercise done today.  Mind over matter, right?  Sometimes I wonder.
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9/22 - AM

I went to the dentist yesterday.  My jaw was open for twenty minutes.  My dentist is amazing.  She lets me take breaks, but I usually decline.  I just want to be done.

Today, the entire left side of my head and neck are throbbing.  But that pain is pleasurable compared to the throbbing in my knees, ankles, and toes.  I have been walking 4-5 times a day, for 1-2 miles per walk.  When I was in physical therapy, my amazing mentor Preeti told me that most people are able to be on their feet, walking for at least one hour at a time.  I am currently pushing thirty minutes.  For most people, this would seem petty.  For me, it is amazing. 

Sometimes, each step forward feels like a mile.  The creases on the sidewalks become individual finish lines I struggle to cross.  But I refuse to give up.  Even if I never reach an hour, I know that I am getting stronger.  And hopefully lowering my cholesterol.  I don't want to go on any more drugs, and risk counteracting the ones I am on now that seem to be helping.  Although the pain in my feet and ankles now are going to drive me to take my third and fourth Aleve of the morning.  On top of 150 mg of Lyrica, and 60 of Cymbalta.  And it's only eight am.
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9/22 - PM

My feet are so swollen I can't fit my shoes on properly to walk or ride.  My toes feel like they are curled up, but they are not, and I cannot move them properly to get rid of the sensation.  Tying my shoes around them sends waves up pain up to my knees.  I just got my new camera, and can't muster the strength to get over the pain, and go out to take some pictures.

I have done some weights for my arms, but my neck is a 7-8 out of 10 on the pain scale, mostly centered on my right shoulder.  After 5 bicep curls, I am biting my lip until I taste blood. I need my shots.  I still haven't gotten an EOB or bill from the first time I received them, however.  I am scheduled to get more in 2 weeks.  I hate to say it, but I don't care how much they cost.  If the insurance denies it, I will work with the office to get a reduced rate.  My neck is killing me.  My feet are killing me.  I just want to curl up in a ball and sleep until tomorrow.

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I just read a story about a woman whose muscles started bulking up uncontrollably.  Eventually, she got into a program called the "Undiagnosed Diseases Program," or UDP.  After months of testing and analysis, doctors isolated the protein causing her condition.  (Woman bulks up uncontrollably (CNN))

If Dr. Graham, who is wonderful and refuses to give up, can't figure me out, I will be stuck with a fibromyalgia and undifferntiated autoimmune disease diagnosis.  It's not lupus.  I don't have a rash on my face.  But my joints, and the muscles and tendons between them, never stop hurting.  Yesterday, it was my hands swollen, today it's my feet.  This morning my face was killing me.  Tonight it's my wrists.

I wish doctors could do a brain scan to see my pain.  I wonder if that's possible.

Maybe if Dr. Graham fails in his quest for a familiar diagnosis, he can help me get into a program like the UDP.  I would be willing to go through just about any test to figure this out.  Not only for me, but also for the other 10% of people, mostly women, who show autoimmune disease symptoms, but don't fall into a category. 
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9/30

Winter is setting in.  Every bone in my body aches for almost an hour after I get up.  I am up to 8 Aleves before dinner some days, and the swelling is still is not going down on a couple joints.  My left foot is so soar I can barely tie my shoe over it.

Still, I am not giving up.  I forced myself to walk almost 2 miles yesterday.  And I am keeping up with my arms, even though the neighbors can probably hear my shoulders cracking.  Today I will ride the bike, but I need to wait for my meds to kick in first.

When I was limping my way through my walk yesterday, I realized how far I had come dealing with the pain.  I can grin and bear it at a 7-8 now.  Preeti would be so proud of me.  Still, if I could get rid of the  pain, imagine how far I could fly.

The insurance company is still refusing to cover the MRI's my doctor ordered.  United Healthcare has been arguing with the poor girls in utilization management for over three weeks now.  I will call back tomorrow, and see what they say.  At this rate, I will need to reschedule next weeks appointment with my doctor, because the tests he ordered a month ago are taking so darn long.
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10/31

I have neglected this post for a month because I was taught not to complain.  But, I should at least keep any readers I have informed of my personal progress.  That way, if by chance someone else is experiencing what I am, we can help each other figure this nightmare of an illness out.

I have kept up my exercise regiment, despite days when the pain was so bad I bit my tongue til it bled, because it felt better than the pain around my joints.

Today, I am recovering from walking to babysit.  I rested several times, breaking up the 4 mile walk into several 1 mile stints, but my left leg is so soar, it literally feels like I was shot in the knee, and my hand are swollen like they were smashed by heavy books.  I had a weird rash on my face last night that looked like raised bubbles of red that felt like they were on fire.  I sweat so bad, my sheets and blanket were soaked through even though I was naked.  This morning, I am still so hot in my hands, arms, and face that it scares me.  The rash is almost gone though (I think), so maybe it was from being outside.

I probably wouldn't be so blunt right now if it wasn't for the half of a pain pill I took with my medicine this morning.  But I really am scared, and don't want to worry my family.  My writing on this blog has become an outlet for me to help forget about the pain for brief moments of time, so I figure I owe it the honesty of being truthful about how awful I have been feeling.  I go to the doctor in less than two weeks, and will hopefully learn more from the MRI's I finally had done (yes, the insurance company finally broke down and authorized them).  I will keep this post updated with anything new.
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3/2/2011
Ultra flexible? You're at triple risk for migraines  (MSNBC)

I have been told by doctors and physical therapists that my elbows, shoulders, and hips exhibit signs of hypermobility.  I also get terrible migraines more often than most folks, of a severity that is very intense.  To read that scientists are finding clues that link these peculiarities together (collagen) is amazing news.