Further downward

 The mind is a powerful thing.  Science has shown that thinking different thoughts literally changes the brain structure and chemistry and can 'rewire' it.  There are examples of victims of abuse experiencing dissociative amnesia where the trauma is significant enough for a person to extract it from their memory completely.  In some instances they will create new memories to replace the repressed experiences and live in a world that their mind has devised with no clue of the true reality.  You also hear stories of amputees experiencing phantom limb syndrome where they literally feel pain in the appendages that have been removed and no longer there. 

 It's hard for me to explain to anyone how I was successful in a short-lived attempt to carry on normally.  I have always been stubborn and strong willed.  Whenever I put my mind to something, I am going to follow through with it til the bitter end.  No one wants to be sick or in pain, I was desperate to have everything return to normal and did whatever it took to get there.  I had bits of relief due to Vicodin and Prednisone that allowed my insane behaviors to continue.  Yet it was my powerful mind that created the greatest substance to help me cope.  Denial became my drug.  The more I took of it, the more everything was going to be okay and it was incredibly addicting.

The weeks prior to my emergency room visit, I had been going to the track, doing calisthenics, working out as usual.  I was afraid to get off track.  I had been sitting around too much during the week I had fevers and “strep” throat, I didn’t want to get out of shape.  So I jumped back in right where I left off.  I noticed I felt a little more sore than usual, and bit more stiff than usual.  I convinced myself it was because I had been too lazy while I was sick, sitting around, doing nothing.  I just needed ride the pain out for a bit, and I’d be back to normal in no time.  I was surprised at how much this little strep infection had taken out of me.  My hips, knees and ankles were sore, but I was a runner, and I have had pain similar to this before. Yet, the pain didn’t go away.  After a few days of running, I felt pain in places I’ve never felt sore before, in muscles and joints that I had barely even used in my workouts.  I felt like I was developing tennis elbow; I had never had pain in my elbow a day in my life. I took a couple days off from my workouts to let my body rest, and to finish my ten days of antibiotics. By day ten of antibiotics, I started to feel okay. 

As I laid in my bedroom staring at the ceiling I thought about my recent vacation to the coast of California.  All the stress of being sick and working a demanding job had really gotten to me. I went out of town to a much milder climate in the Malibu area to visit a friend and get my mind off my winter blues.  Even though I was starting to feel a little better, I began to notice I was breaking out on my forehead.  I was kind of embarrassed to go out on the town and to been seen by my good looking guy pal who lived there.  I showed him a lump that was beginning to form on my ankle.  He thought it might be a bug bite.

I couldn’t keep up all the physical activity for long.  The pain got worse and worse.  At work, I couldn’t get up out of my chair by simply standing. I had to push myself up with my arms to stand.  And at home, before I knew it, I had to pull myself up off the floor by grabbing onto the beam.  I was rapidly and progressively getting worse by the day.  My ability to keep up my coping mechanism was diminishing.

Pushing the limit

Once again, I mentally prepared myself to walk before stepping foot out of my car when I arrived at the hospital.  The short distance to the hospital doors seemed like a lifetime away.  What normally would take me about thirty seconds was going to take a lot longer.  I eventually made it into the emergency room and checked in.  The staff asked me what my symptoms were.  I told them I was in intense pain, and they looked at me funny, as if to say, “Sure you are.  You are probably just one of those addicts looking for someone to give you more narcotics.”  I also showed them the strange bumps all over my body.  It looked as if it could be a rash.  

 I had two different looking rashes.  The bumps on my arms appeared in a cluster, one bump in the middle with several bumps around it almost in the shape of a flower one would have drawn in first grade.  They didn't itch or hurt, so I still wasn't sure if it was in fact a rash or what.  The ones on my forehead looked much smaller and could be dismissed as acne. 

I was shown into a room and seen by a doctor immediately.  The doctor, Dr. Stacey, asked me for my medical history, the usual, how long I have been experiencing these symptoms, and other pertinent information such as allergies.  I thought about it hard and started from the most recent thing I could think of.  I went to Dr. Cluck the first week of February because I was having fevers, night sweats, chills, malaise, swollen lymph glands and other typical cold and flu symptoms.  My fevers were so high and after several days of 104 degree temperature, I was afraid it could permanently fry my brain.  He had me do the typical, “Open your mouth and say, ‘Ah’,” bit, and held out the tongue depressor with two reluctant fingers and was cautious to not get too close of a look.  He took one look at me and diagnosed me with strep throat.  He never gave me any kind of test for strep, he frankly just wanted to get me out of there so he wouldn’t catch whatever bug I had.  He prescribed me ten days of penicillin antibiotics.    

I told Dr. Stacey that I had had flu like symptoms for about five days, and tried to allow my body to heal before seeing that doctor.  I had never been to the emergency room before in my life but this was my second visit to the ER that month already, the previous time I came due to blood in my urine.  Other than that I had no medical history of anything.  He thought that perhaps I had waited too long to get treatment for the strep infection and that it could have turned into something much worse, namely, rheumatic fever.  He told me the treatment for rheumatic fever was somewhat controversial because it called for prescribing steroids.  However, he had never seen anyone with anything like what I was experiencing and did not feel comfortable giving me steroids at that point.  They took a bunch of blood for lab tests and said they wouldn’t really know anything until the tests came back.  He instructed me to follow up with his wife, Dr. Barry, who worked in the clinic next door. 

“She’s hard to get an appointment with,” he said, “but tell them I sent you.  You’d be better off going to her over Dr. Cluck.”  (Looking back, the name alone should have tipped me off to find another doctor.)

Luckily, I got in to see Dr. Barry the very next day.  I went over all my symptoms and history again.  She wanted me to follow up with a rheumatologist due to the arthritis and possibility of rheumatic fever.  She went on to say, “In all my 20 years of practice, I have never seen anyone with anything like what you have.  If it is rheumatic fever, I do not know enough about it to feel comfortable treating you for it at this point.  No offense, but this is a total mystery to me, and it makes me that much more interested in your case.” 

“What do I have to do to get into a rheumatologist?  I don’t even know where I’d find one around here.”  I said. 

She told me she knew a good rheumatologist up in Reno, three hours away.  “He is also very hard to get into.  If I give him a call today, you might be able to get in in about three to four months.”

I broke down and began to sob inconsolably.  “I can’t go on living like this for another three or four months.  I am in excruciating pain.  I can hardly move.  I look like a freak with these rashes all over my body and neither of us even knows that I’m not dying.” 

“I will call him today, and there could be a chance there is a cancellation, if he can fit you in, you have to go, no exceptions.”  She assured me he was at the top of his game and would be able to diagnose any rheumatic fever or other “rheuma” problems, as she called it on the doctor’s note.  She prescribed me narcotic pain killers and sent me home.

I took the pain pills religiously every four to six hours.  I even staggered the doses so I wouldn’t feel them wearing off.  When I would roll over in bed in my sleep in the middle of the night, I could tell when the meds were beginning to wear off and I'd take more.  Truthfully, the pain killers just barely took the edge off.  My pain scale went from ten, the worst, down to an eight or seven.  As I laid there in bed, all I could think of was the pain. 

A lot of people have used the phrase that they feel like they’ve been “hit by a train.”  Well, that’s exactly how I felt, except it felt like the train was still crushing me. It was a pain that felt like every bone and joint in my body was shattered. Standing was painful, so I sat to try to relieve the pain, but sitting was painful, so I lied down to try to alleviate it, but nothing worked.  It didn’t matter what I did, the pain was there.  I convinced myself I had to somehow manage to carry on as normally as possible.  I had to brainwash myself the pain was all in my head. 

I was determined to keep living my life.  I was not going to let the pain rule me.  So I went to the gym.  I got on the elliptical and powered through. With every step I told myself, “It’s all in your head. You are tough. You can push through it.  You can un-imagine it.” I took pride in knowing how tough I was, it gave me a rush. It made me feel superior to any other person in that gym. It made me feel superior to my condition as well, I was in control of my body and I would tell it how it was allowed to feel.  I would tell my body if and when it was allowed to feel pain, or be exhausted. Mind over matter; and my mind was powerful enough to beat my body.  Looking back I have no clue how I did this and realize I was going insane.

When it all hit me...

I was healthy, active and young with the rest of my life ahead of me, until two months after my 27^th birthday.  In the time frame of almost overnight, I became incapacitated, borderline bed ridden and thought I was dying.  I went from running five miles a day and working an arduous job as a wildland firefighter to hobbling around my 400 square foot apartment like a 97 year old woman, scared that the end was near.  I could not deny there was something terribly wrong with my health, but had no idea what was wrong.  Naturally, horrible worst-case scenarios roll through one’s head.  Cancer? Multiple Sclerosis? Lou Gehrig’s Disease? Or even something extremely rare that only a handful of doctors in the nation knew anything about.

It was February 20^th in Mammoth Lakes, CA; my downstairs studio apartment was buried ten feet under snow.  I had a huge gap underneath my door which created quite a draft.  It was bone chilling.  I had a wood stove, but moved in too late to get fire wood loaded on my patio.  The only source of heat was a tiny electric wall heater.  I huddled in front of it every night, and played solitaire with an old worn out deck of cards.  I lived alone in this relatively new place and barely knew anyone.  I didn’t even have cable television to keep me company, so solitaire became the only thing left to keep my mind off my health.  I had been sick with a fierce cold/flu, and feeling increasingly stiff with intense pain.  Dragging my weak body up off the floor became harder and harder each day.  Yet, I still tried to maintain some level of optimism.  I told myself I was just stiff from sitting around so much, since I had become unable to exercise.  Or I was extra tired/sore from exercising too hard.  Every day I told myself I would probably start feeling better tomorrow. 

As I sat there that night, I studied my ankles.  A week prior I had developed a swollen lump on one, and thought it could be a bug bite.  It grew to be about the size of a golf ball.  It made my entire ankle feel stiff.  Just then I noticed I had developed a lump on the other ankle as well.  An alarm went off in my head saying, “Stop procrastinating and get to the hospital A.S.A.P!” For the first time I knew something was wrong.  I worried, “What if these are tumors?” and with my health deteriorating what if it was cancer?  I scooted on my bottom over toward the wood beam in the middle of the room to help pull myself up off the floor.  However, my body would not cooperate; reality slapped me in the face.  I could not stand up off the floor.  I was hysterical.  My heart was racing and my breath felt shallow and labored.  I tried hard to calm myself down because I HAD to get up off that floor.  With whatever strength was left in my upper body, I struggled to stand by pulling myself up on the wood beam.

I came to terms that I needed to go to a doctor immediately even if it meant the worst—that there was nothing they could do, and I would eventually die.  I had no one to take me to the hospital, I barely knew anyone in town.  I was also embarrassed to be so young and for the first time in my life… disabled?  I was far too stubborn to call for help anyway, and didn’t want anyone to see me like this.  I called my boss.  I was choked up as I tried to hold back the tears.  I didn’t want anyone to see or hear me cry; I didn’t want them to feel sorry for me.  “I just wanted to let you know that I’m really sick and going to the hospital.  I won’t be in tomorrow.”

It took intense laboring to put on my coat.  I could barely lift my arms to put them into the sleeves and I had to lift my legs with my arms to step into my snow boots.  Mentally, I prepared to start the journey of climbing the stairway to get to my car.  At this point, my upper body was the only thing left to get me up them.  I grabbed onto the railing and pulled my body up; each step was only possible by a combination of lifting my legs up with my arms and pulling my body up by the railing.  Making each stair by some miracle of God.  Each step I took was accompanied by excruciating pain. It took me nearly ten minutes to reach the top of one flight of stairs and I had to rest due to the overwhelming pain and fatigue.  The temperatures were below freezing but I resigned to the cold.  There was nothing I could do to get to a warmer place any faster.  I eventually got to my car, pulled myself up by the handle, and drove to the emergency room.