Always think we get more time

     6AM.  I woke up.  I had to pee.  I stumbled into the bathroom, labored to sit down and stand back up again.  As I walked back over to the bed, I collapsed.  With everything I had gone through the past 5 weeks, I seriously thought this might be the end.  Everything went black.

     I lost count of how many times over the past several weeks I questioned if I was dying.  At one point I had resigned myself to accepting death as an outcome.  I told myself to quit thinking I could die, but it was still hard to stop the racing thoughts of everything I hadn't yet done with my life.  I had barely even begun to live.  Funny, how in these moments you realize what and who is most important in life. All the sudden everything else seems so trivial when all you want is to live.  I thought about how ridiculous I was in my obsession to have a good looking body, when now all I wanted was a body that had a pulse.  Or complaining about my fat legs, when now all I wanted was legs strong enough to hold me up when I walked.  I thought about the people I cared about, and wondered if they knew I was thinking about them right at that moment.

     I was too stubborn to die.  I was lying in a heap on the floor of the hotel room when I came back to consciousness.  The last thing I remember was my face slamming into the wall as I lost all control over my body.  I crawled over to the bed and had no clue what I was supposed to do next.  Should I call an ambulance or go to the emergency room?  If I went to the emergency room, I would lose my appointment that was a miracle to get in the first place.  I called my parents, 800 miles away, and let them know what had  happened.  They felt completely helpless to do anything for me in that moment, but still got on the road as soon as they could to make it down.

     I decided I had to continue on with my scheduled plan for the day and get to my doctor appointment.  He would at least be able to get me to the emergency room if he thought it was necessary and I firmly believed he would have answers for me.  I knew I couldn't drive at that point, and had started popping more pain pills.  I decided to call for a taxi and headed off to the rheumatologist, still in my pajamas.  I still had no clue how I was going to make it back to my apartment over 200 miles away.


------
     The rheumatologist unfortunately didn't have an immediate answers for me. The only visible signs of my illness were the rashes. They ordered more blood tests and prescribed me prednisone (steroid).

     I took a taxi cab back to the hotel; a small  $60 fair round trip.  I started making plans to get back home.  I couldn't take the bus because I couldn't leave my car behind so far away.  I called the only person I could think of that might be able to come pick me up.  I felt so embarrassed to ask such a favor of someone who was practically a stranger to me.  He was a coworker, a law enforcement officer, and I knew it was his day off.  I tried not to give him a lot of details about my situation,  just that it was kind of an emergency and I needed a ride.  He was able to take the airport shuttle up  to Reno and drive me in my car back to my place.  We stopped for burritos along the way and I paid for his meal.  It was the least I could do. 
    

Sober enough to drive

     Since the onset of my symptoms in late January, starting with my cold/flu that I had been told was strep throat, it had been one month.  A full 30 days of torment and anguish.  This may not seem like a long time of suffering compared to other people's experiences, but the intensity was insufferable.  I am not superstitious, but I was beginning to wonder if someone had a voodoo doll of me and was stabbing pins into it.  I was still waiting for the morning that I would wake up and feel better.

     A few days before my appointment, I began to plan for my big trip to Reno  to see the rheumatologist.  The winter weather and storms were completely unpredictable in that area, so I knew I needed to give myself plenty of time.  I had one or two acquaintances I called to ask if they might be able to go with me, or drive for me.  Surprise!  No one was available.   
      My appointment was early in the morning of March 4, three hours away.  In normal conditions, I would of had to leave by 5AM to make it on time.  In the winter, going to an area I was unfamiliar with, I would have to have left at least by 4AM.  I thought it was best to arrive the night before to make sure I would be there on time.
     The last thing I needed was to get into a wreck while under the influence of narcotics. I gave myself ample time for the drug to get out of my system and quit taking pain pills, except for ibuprofen around 6PM that evening.  
     Sometime around 10AM the next morning, I left for Reno and planned to stay in a hotel room that night.  I would be getting into Reno early enough to make sure I got a good night's rest before my appointment.  I was feeling a little sore and stiff, but told myself I could make it through the pain for just a few hours.  Luckily, I was driving during the warmth of the day, and the roads on the narrow two lane Highway 395 from Mammoth Lakes to Reno was relative clear.  But it still took me longer than expected to get into town.  It was almost 5PM when I rolled into Sparks, NV where my hotel was.

Pain...

noun

1.  physical suffering or distress, as due to injury, illness, etc.

2.  a distressing sensation in a particular part of the body:

a back pain.

3.  mental or emotional suffering or torment:

I am sorry my news causes you such pain.

4.  pains.

1. laborious or careful efforts; assiduous care:
   Great pains have been taken to repair the engine perfectly.
2. the suffering of childbirth. (which does not even compare to the level of pain I experienced) (www.dictionary.com)

     I was in so much pain it hurt to sit any longer, and my arms could barely hold onto the steering wheel.  All I could think about was taking my pain pill and laying down.  Before I could take my pain pill, I had to find food to take the medicine with so I would not throw up.
     I drove through rush hour traffic, getting stopped at every red light it seemed, to find the closest grocery store.  I wanted to buy a few groceries so I would have food on hand throughout the night if I needed to take more pain pills.  I was frustrated after driving a few miles I could not find a grocery store.  I had no GPS or smart phone back in these days and had to figure out the hard way how to find what I was looking for.  Of course I had directions from the internet to the hotel and doctor's office, which turned out to be across town from each other, but I was unfamiliar with where anything else was.  My patience was exhausted, my pain level was at a 10, and I felt as if I were going to throw up, or pass out from the pain.
     I finally found a grocery store, parked the vehicle and hobbled across the parking lot.  I held onto a cart while I walked around the store to help relieve my lower body from some of the agony.  While at the checkout stand, I fumbled pulling out my debit card from my wallet.  My fingers could barely grasp my card and arms didn't want to lift my card to run it through the machine.  I was near tears with every step and choked back tears walking to my car in the parking lot.  I felt embarrassed because I looked like a freak limping around, dragging my feet so slowly, no crutches, casts or bandages, otherwise looking perfectly healthy.  I kept breathing and told myself everything would be fine.
     I began eating as soon as I got in the car so I would have food in my stomach to take my pain pills when I got to my hotel room.  I checked into my hotel, popped a couple Vicodin, and laid on the bed and tried to watch tv for the first time in at least a month.  I turned it on, stared at the screen for a while, but couldn't lift the remote to change the channel.  But I managed to lay my hands across a keyboard so my fingers could type out a quick message on Facebook to my friend.  I set my alarm for 630AM, took a couple more Vicodin, said a quick prayer of thanks for getting to Reno safely and went to sleep.

Watching it burn

     It had only been two days since my appointment with Doctor Barry.  “I got you an appointment with the rheumatologist!" Dr. Barry said.  "He was able to squeeze you in early in the morning before regular hours!  You have to be there, March 3, 8AM, in Reno.  You can't miss it!  It may be months before he can get you in again.”

     I felt like a prayer had been answered and I would soon get down to the bottom of this illness.  The rheumatologist, Dr. McClure, was highly regarded in his field and in medicine as a whole.  I felt like I would be in good hands, that he would know what was wrong and would be able to cure me.  I trusted the fact that he came highly recommended from Doctor Barry.  She was clearly taking a genuine interest in getting me the medical attention I needed.

     With every day becoming increasingly painful, waiting for my next appointment felt like an eternity.  The Vicondin pretty much quit working.  The only thing it was doing for me was helping me to relax.  The pain that awakened me in the middle of the night would be my reminder to take my next dose.  I still felt the pain just lying in bed, and anytime I needed to roll over in bed the pain was slightly tolerable while on the pain killer.  


Lonely...

adjective, lonelier, loneliest.

1.  affected with, characterized by, or causing a depressing feeling of being alone; lonesome.

2.  destitute of sympathetic or friendly companionship, intercourse, support, etc.:

a lonely exile.

3.  lone; solitary; without company; companionless.

4.  remote from places of human habitation; desolate; unfrequented; bleak:

a lonely road.

5.  standing apart; isolated:

a lonely tower.

(www.dictionary.com)

      I felt a loneliness I hadn’t felt in a long time.  I had been trapped in my 400 square foot apartment for weeks, with no television, no internet and my cell phone barely got service.  I felt like I was literally cut off from the rest of the world.  If I stood in just the right spot in my apartment, I could get enough signal to make a call.  For the first time in my life, I realized I needed my family.  I called my dad and stepmom, just to say hello.  I never really got along with her, she was always very mean to me as a child.  I didn't feel like I could be vulnerable to her and I was determined to stay strong.  I didn’t want to let them know the hell I was going through.  But I couldn’t keep it in.  I cried to my stepmom.  I told her it was because of the pain I was in.  She felt absolutely helpless to comfort me, I’m sure.  She was nearly 2,000 miles away.  She asked me if I had a candle and said that some people find comfort in watching the flame of a candle burn.  It was about all I could do; light a candle and watch it burn. 

     I sat in front of my electric wall heater for hours watching the flame from the candle flicker and played solitaire.  I tried desperately to do anything to get my mind off of it.  At times I would be staring at the candle and begin to cry and couldn’t stop.  I was still scared of what was happening to my body.  I stopped exercising.  I couldn’t lie to myself any longer.  I stopped working.  My doctor wrote a note explaining to my management that I was incapacitated and unable to work.  I went on the Family Medical Leave Act and a leave program that allowed others in my agency to donate their unused annual leave to me to cover my extended absence.  Without the help of coworkers who donated leave to me, I would have gone without a paycheck as well.  Friends and people I didn’t even know all came together to donate leave to me.  I was so very thankful to God for everything that was coming together despite the traumatic experience I was having with my health.
      Despite all my medical documentation I was turning into management, they were growing tired of my absence.  They started to doubt I was even ill.  They didn't understand how I could be so ill that I couldn't just sit at a desk and at least answer phone calls.  There were rumors around my office that I was faking it, and that maybe I should see a psychologist.  One rumor was reported to management that I was simply depressed because my boyfriend had broken up with me.
     That stung.  A lot. Because a part that was true.  My boyfriend did break up with me because I was so sick.  
     Each moment loitered around for as long as it pleased while I waited for my appointment with the rheumatologist.  The appointment was still one week away, not to mention 3 hour drive away.

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.