Archive for January, 2009

Beth’s Visit

January 31, 2009 at 8:56 pm · Filed under Uncategorized ·Tagged , , , ,

My first night home was fairly sleepless.  My mother helped me change for bed, and physically had to help me get into bed as I wasn’t able to even lift my legs into bed.  Once I was in bed, I was unable to change positions and was in the same position until she came to help me get up the next day.  The Tylenol 3 prescribed for the pain from the incision upset my stomach…so I didn’t take those very long…only for the first day and a half. 

A day or two before I was admitted to the hospital, Beth had booked a flight to come home and visit.  The plan had been for her to visit before I ended up in the hospital, but due to the speed at which I’d been admitted, it worked out that she arrived the day after I was discharged.

Since her job as a chef is very time consuming, she hadn’t been able to come home for Christmas and Mom and I hadn’t seen her since we had each gone to visit her in August.  She got home Friday, and we had Christmas dinner that night.  This was the first day that the hunger side effect of Prednisone reared its little head.  No more than half an hour after finishing a delicious turkey dinner, my stomach was rumbling and I felt crazy hungry. 

At this point, I needed two people to assist me to get up out of my chair and I was very unsteady on my feet.  My mom was bathing, dressing, and undressing me, and getting me into bed.  I had a hard time chewing, my hands had a terrible tremor, I was having a hard time swallowing, and I often choked when I was drinking.  This was scary since I had a hard time coughing to clear my lungs when I got a gulp of tea in them.  

Curtis came over and Beth cooked us all a fantastic meal on Saturday: Duck breast crusted with a goldfish cracker and morelle mushroom dust, brown butter risotto, grilled asparagus, and a foie gras emulsion.  Dessert was lemon crème brulée.  It was amazing….but yet, twenty minutes later, it was if I hadn’t eaten anything.  We spent the evening watching movies, and then I my evening piece of bread (to quiet my stomach long enough to sleep), and mom put me to bed.  Beth couldn’t understand how I could “let mom see you naked and undress you like that”.  However, I didn’t really have the option.  I was lucky enough to have a mother willing to do that, as I was physically incapable of doing it myself. 

Sunday morning, Mom and Beth went to church.  When they returned, I got up and mom gave me a sponge bathe and helped me get dressed for the day.  I decided that I was going to stand in front of the sink instead of sitting.  Hindsight, I should have conserved what little energy/ strength I had.  Once I was dressed, I shuffled out of the washroom and walked the maybe ten feet to the family room.  When I got beside the lazy boy where Dad was sitting, I paused and he reached out and put his arm around me.  All of a sudden, I collapsed and fell backwards.  Because his arm was behind me when I fell, my dad chair flipped backwards and he did a somersault out of the chair.  I missed hitting the corner of the stove by about three inches, but still smashed my head on the tile floor.  Beth was standing in the kitchen and saw the whole thing.  Mom came in from the washroom to find both my dad and I on the floor.  Beth put a pillow under my head and I stayed on the floor in the kitchen for a bit.  She read me the church bulletin and let me know I was on the prayer list.  Hah.  Since the spine board was in the laundry room, my parents suggested we use it.  However, stubborn as I was, I decided that I would be able to get myself up.  Smart, I know- especially considering Beth had to grab my hands and shoulder just to get me to a seated position.  I slowly made my way over the ten feet to the couch.  Once again, I felt that I could use the couch to get myself up.  I then decided that if the cushions were removed from the couch, I could easily use my arms to push myself up.  No such luck.  I was getting increasingly frustrated.  I was embarrassed that I couldn’t do something simple like get up off the floor.  My parents and sister suggested the spine board again.  I snapped at them to just leave me on the floor and have their brunch.  I was being ridiculous, and I knew it, but I couldn’t help it.  After brunch, I knew I had to get up off the floor, so I gave in to the spine board.  Two minutes, and I was on my feet.  If I wasn’t such a stubborn idiot, I could have avoided two hours of lying on the floor. 

That afternoon, Mom and Beth went to visit Beth’s in-laws.  They came back with a present for me: A shiny silver walker.  After my Olympic style fall from the morning, it was decided that I should be using the walker to steady myself when walking between the family room, washroom, and my living room “bedroom”.  They also brought a commode for over the toilet in the washroom to raise it up.  It has arms that allow me to use my arms to help get myself up.  It was great to have Beth home and we watched a few movies while she was there.  Before she left, we realized that once she left and dad went back to work, I would be unable to get up out of my chair since I needed two people to help me get up (or else I’d fall to the side where there was no one).  While Beth and I watched a movie, Mom and Dad headed into the pharmacy to see what they could find.  The solution was a cushion called an UpEasy PowerSeat. 

Power Seat

Power Seat

That little cushion is a life-saver.  It fit perfectly on the family room lazy boy.  With the flick of a lever, it lifts me up to almost standing, and then with the walker in front of me, I am able to stand completely.  My parents still wanted someone around when I stood up, but it enabled me to get up to go to the washroom without having someone help me up. 

Beth ended up having to leave a few hours early Tuesday due to an incoming snowstorm, but it was a great visit nonetheless.

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Home Again…

January 30, 2009 at 3:31 pm · Filed under Uncategorized ·Tagged , ,

After I was discharged, we left the hospital.  I was unable to even get my feet in the car by myself and my dad had to lift my feet into the SUV for me.  Once I was settled in the car, Dad and I headed home while Mom headed off to fill my prescriptions at the pharmacy: Methotrexate, Folic Acid, Calcium Carbonate, Prednisone, Vitamin D, and Tylenol 3. 

When we arrived back at the house, dad had to help me get out of the car.  To get into the house, there is two steps.  I grabbed onto the doorknob and stepped up on the first step.  As I went to step up unto the house, I collapsed.  Dad was behind me and kept me from falling backwards onto the garage floor by pushing me into the house.  I ended up in a heap on the mat in front of the laundry room.  My entire body felt like gelatin.  This was the point at which we realized that I had deteriorated while in the hospital.  My dad grabbed the back of my pj pants to move me into the house enough to be able to shut the door.  I decided that I would crawl down the hall, and use the stairs to get up onto my feet- easier said than done.  I couldn’t sit up, let alone crawl the twenty five to thirty feet down the hall.  This is when part one of Dads genius plan came into play.  Haha. 

Dad brought my blanket and I managed to crawl onto the blanket.  He then pulled me down the hall (yay for hardwood flooring) like a dead bear.  There’s really no other way to describe it.  Once I was at the stairs, it was apparent that my plan of using them to help get back up to my feet wasn’t going to work.  My dad couldn’t even help me get up because my arms just went straight up when an attempt was made to lift me up under my arms.  My body was similar to the cornstarch silly putty I used to make when I was like – solid until you tried to pick it up, and it went to liquid.  Dad brought me a pillow and a juice box and I laid on the floor in the front entry way.  He had a plan, so he headed off to Salisbury. 

During the time that Dad was gone, Mom arrived home.  Since dad’s car was gone, and the television was on, she was kinda confused.  When she found me on the floor and I said I’d fallen, she thought I’d fallen down the stairs.  I explained how I’d made it from the garage to the entryway dead bear style, and that Dad had gone to Salisbury.  Dad arrived home a few minutes later with a spine board from the ambulance bay.  With my dads help, I rolled onto the spine board and they strapped me to it.  My dad lifted the head of the board up until I was standing on my feet, and then my mom steadied me while the straps were unhooked.  It wasn’t the most pleasant experience, but it definitely worked well.  Once on my feet, I was able to walk to my chair in the family room.  Luckily, the fall didn’t cause any major damage…My leg was still mostly frozen from the Lidocaine which kept it from hurting too much and thankfully, no stitches were popped during my shenanigans….

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Hospital Admission

January 27, 2009 at 10:39 pm · Filed under Uncategorized ·Tagged , , ,

I was admitted to the hospital around 11am.  I was put into a temporary area in the emergency room triage area.  A nurse came by and I had my first electrocardiogram by 11:30am.  By 11:45am, I had another set of blood work done, and then my first  push of Solumedrol IV treatment.  The IV treatment took about half an hour.  I sat in my hospital bed listening to my iPod and reading magazines while it dripped. 

 

Just after 1pm, a porter came to get me to take me to the x-ray department for a chest x-ray.  This was an exhausting experience.  I needed help putting my arms up for one of the shots…and needed assistance to even sit up for another.  A little while after I returned to the ER, I was assigned a room on a maternity ward as this was the only place that had free beds. 

 

I was in a room of four beds and there was another lady in the room.  She had the curtain drawn and was non-stop on the phone.  By this point, I was exhausted.  So my parents decided to take off and go home for a bit and get some of my stuff: Clothes, toothbrush, movie, cell phone & laptop.  My first nurse was very cheerful and helpful.  She made the effort to learn what I could and couldn’t do.  Unfortunately, I was put in a bed that required someone to manually crank it up and down.  This was an issue as I was unable to sit up by myself.  What little strength I had, was hindered by the fact that when my IV was being put it earlier in the day, the nurse had popped the vein on the top of my arm.  This necessitated placement of the IV port in the crook of my arm.  The problem with that placement, is it made it difficult to even bend my arm to try and use the railing on my hospital bed to pull myself up.

 

The older lady across from me continued to talk on the phone.  I could hear her telling people that there was a “little girl” in her room and she didn’t know what was wrong with me.  Each call, she complained about her arthritis and the fact that no one brought her a newspaper.  When she was off the phone, I decided to use all my strength to pull myself up.  It took a lot of effort, but I managed to do it.  I shuffled across the room, and offered her one of the magazines that I had.  She was very happy to have something to read and wanted to know what was wrong with me.  That night her son came to visit, and he put my bed up for me so I was able to sit for supper.  My parents brought me a hamburger when they came back which was fantastic, because my hospital supper looked like it had been chewed already and was left on the plate.  What little bit I had attempted to eat, has mostly ended up on the tray due to the increasingly pronounced tremor that had developed in my hands.

 

After my parents left, I started watching Step Brothers on my laptop.  As it got later, I decided to pause the movie and go get ready for bed.  The nurses had wanted me to call when I was getting out of bed, so I did.  After no one showed up, I used every ounce of energy I had to get myself out of bed.  I walked to the washroom in my room and changed and got my face washed and my teeth brushed.  As I was walking out of the washroom, the nurse came in to take my vitals that were done every four hours: Pulse, temperature, and blood pressure.  I told her that my heart rate was obviously going to be up as I’d just exerted myself getting ready for bed.  She ignored me and took it anyway.  I finished getting myself ready, managed to pull off the sticky electrodes left over from my earlier ECG and climbed back into bed.  As soon as I got into bed, another nurse showed up to give me another cardiogram!  This nurse thankfully removed the electrodes before leaving and I went back to enjoying my movie.  Not too much later, two doctors showed up at the foot of my bed.  They informed me that I had an elevated heart rate.  I laughed and said you’ve got to be kidding me.  I explained the situation about how the nurse had taken my heart rate / pulse as I was walking out of the washroom.  They rolled their eyes, apologized for interrupting my movie, and said that there was no reason for me or them to be concerned, it was obvious that it was a matter of terrible timing.  Another nurse told me I was going to have my IV port cleaned and that I could probably get it moved to a more convenient position so I stayed up.  At midnight, it was clear that no one was going to show up, so I took my Ativan, which proved to be useless, and tried to get some sleep.

 

Wednesday morning I was taken for respiratory testing.  Several different tests were done to see how my lungs were faring.  They were definitely not at their peak.  When the porters brought me back to my room, I was set up to do my 2nd Solumedrol treatment.  My family doctor stopped by to visit as well.  I could tell he felt bad that he hadn’t been able to diagnose me properly.  The surgeon also stopped by to talk to me about the biopsy.  He checked my thigh as well as the deltoids in my upper arm and decided that he’d take the muscle sample from my arm.  I wasn’t overly thrilled as I don’t scar well, and wasn’t really looking forward to having a three inch scar on my upper arm.  However, he was the surgeon, so I just kept my mouth shut.  Later on, a nurse came to ask me questions prior to me having an MRI.  My favorite question was asking whether or not I had ever had a penile implant.   I was taken down to the MRI department.  I had on a hospital gown, and they had wrapped me up in blankets on a stretcher to take me down.  For some reason I wasn’t allowed to go anywhere in a wheelchair, every time I was transported, it was on a stretcher.  The porter decided to pull the blanket off and managed to displace my gown completely so that the people in the MRI waiting room got to see me in my underwear.  Lucky them. Haha.  The plan was they were going to do one shoulder…bring me back up to my room…and bring me back later to do the other one.  The reason they were doing this is because they were waiting for a kid to fall asleep so they could do his MRI.  The problem with this plan was that they were only going to be able to give me a sedative one time.  I am somewhat claustrophobic, so this did not sound like a good plan to me.  Thankfully, they hadn’t given me the sedative in my room, so they were having to wait to get the Ativan.  During this time, the kid fell asleep so it was decided I’d just come back later and have it all done at the same time.  Much better plan.  This new plan allowed me to put on some pajama pants to avoid another awkward MRI waiting room situation!  Later on, another porter came and got me and brought me back.  The MRI guy came out and gave me two sedatives.  That made him my new friend of the day.  After the sedatives had kicked in, the MRI guys got me situated and ready.  Each shoulder was done separately so I was basically immobilized with my shoulder in a hard case.   They put a cloth over my eyes, and I moved into the tunnel- thank God for sedatives.  I don’t think I would have been so calm, but due to the Ativan, I couldn’t care less than I was in a tube!  After the MRI, I was taken back to my room to sleep off the sedatives while Berniece, my roommate, ran up her cell phone bill.  Michelle stopped by to visit again, and my neighbor dropped by with flowers, and my friends Lacey and Brian dropped by as well.  It was nice to have visitors.  My dad came by with Chinese food for supper.  The biggest problem with the hospital food was that no one would answer my call to come put me bed up.  So the hospital workers would drop the meal off on my tray, but I wasn’t able to sit up or get the tray table over to the bed.  And even if someone moved it over to me, I didn’t have the strength to lift the covers off the meals or the steady hand needed to eat the soup or whatever other tasteless concoction was hidden in the bowl.  After dad and I had supper, mom came in to visit to help me get showered.  That was a treat. Hah. There was a shower room near my room so we went there.  This seemed like the best choice, so I could shower, and my mother could help me wash my hair as I was unable to lift my arms in order to do it.  I stood there for 10 minutes and the water didn’t warm up even slightly.  At this point, I was exhausted, and we returned to my room to try the shower there.  I’m not sure what the hospital was thinking when they installed this shower- it had absolutely nothing to hold onto…no grab bars, no towel rack, and no grips on the floor.  It was slippery and required a step up to get into.  I managed to get into the shower and then, lucky me, the water turned scalding.  I was unable to move out of the stream of water, so my mom reached in and turned the knob…causing the water to become more scalding and causing me to scream, scaring Berniece.  Mom got the water turned off, and we gave up on the shower.  Terrible at the time, but something we can laugh about now.

 

Thursday morning i had my last Solumedrol IV treatment and Brandy came to visit.  I was put on NPO, meaning no food or liquids before surgery.  My surgery was scheduled for early afternoon.  They ended up having the operating room free a little early and a porter came to get me.  My dad had come over to come sit with me in surgery.  When I got to the OR, the nurse said I looked thirsty, and I said that yeah, I was thirsty since they’d cut me off from eating and drinking at 9pm the night before.  The nurse apologized and explained that because it was a local anesthetic being used, I shouldn’t have been cut off.  She got me some water and I guzzled down 6 glasses of water before we got down to the fun part.  After I got moved to the operating table, my surgeon starting marking my arm.  He then stopped and said “you’d prefer the thigh, wouldn’t you?” I said yes, so he started marking my thigh.  I was pretty happy about that.  It’s much easier to hide a scar on your thigh than it is to hide on your bicep.  The doctor started by making a 3 inch incision.  Anytime I winced, he’d shoot me up with more Lidocaine.  He clamped open my leg, and cut down to the bone.  The surgery took about an hour.  He ended up with a piece of muscle about the size of two Scrabble tiles.  Someone from pathology was standing around waiting to take the muscle piece, but the surgeon let me see it.  It looked like a piece of perfectly aged beef. Hah. The pathologist left with the muscle tissue, and the doctor stitched me up.  He used dissolving stitches and stitched from the underside.  This saved me from having to get stitches taken out and made for a nice clean incision.

 

After the porters brought me back to my room, I was discharged.  Berniece, my roommate, had been discharged while I was in surgery.  The nurse said she had been looking for me because she wanted to take a picture of me for her cell phone.  Too funny.  I left with Dad, and mom left to go fill my prescriptions…

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Rheumatologist Appointment

January 27, 2009 at 4:19 pm · Filed under Uncategorized ·Tagged , , ,

At the Rheumatologists office, I was given a questionnaire to fill out prior to seeing the doctor.  It listed different things such as what I was able to do, what I needed help to do, what different aids I was using.  At that point, I needed help getting to a standing position, dressing, doing my hair, and at the hospital, I was using a wheelchair to get around as I was not strong enough to walk around the hospital.  There was also an area to show where I had pain.  My shoulders were always aching and sore to touch at that point.

 

Once I met with the doctor, he did a thorough exam as well: Pushing forward and backwards, testing my grip, checking my nails.  He asked lots of questions as well. 

 

After the questions and exam, he stated he as well agreed with the previous two doctors.  It appeared to be Polymyositis but he wanted more blood work, an ECG, chest x-ray, MRI and a muscle biopsy.  He also wanted to start me on treatments of steroids to start trying to combat the disease.  He called a surgeon to see when he was available to perform biopsy surgery.  The doctor made me a deal: If I agreed to be admitted, he could get all the tests done in three days, and start me on intense IV treatments to jump start the effectiveness of the medication.  This three day time frame was important to me, as my sister was flying in to visit me. 

 

By 11am, I was in the Emergency Room being admitted…

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Neurologist Appointment

January 27, 2009 at 4:02 pm · Filed under Uncategorized ·Tagged , , , , , ,

Tuesday morning had an early start.  My appointment with the Neurologist was at 7:30am, so we got there around 7.  We’d learned our lesson from the day before, and got a wheelchair with foot rests.  The EMG clinic was in the dungeon of the hospital.  Very sketchy.  Once we got to the clinic, I got registered and my dad and I went to sit in the waiting room.  While I was waiting, this lady in the waiting room said “Oh, I need to tell you this” and proceeded to tell me about how if you put three cell phones together by a kernel of popcorn, it will make the popcorn pop.  After that gem of a story, she continued to tell me her life story.  As well as letting me know how she could never take pills as a child, but as she got older she got much better at it.  Then she had cancer for a bit, and she was pretty much a pro at taking pills now.  She just kept talking and talking… When my name was called, my dad jumped up and wheeled me out of the room.  His only remark was “Well, wasn’t that special…” hahaha. 

 

My mom helped me change into a gown and the technician came in and took the temperature of my hands and feet.  Due to the testing that was being done, they had to be at a certain temperature.  They were too cold, so she filled the sink with hot water and I had to sit there with my hands in water.  I could hardly even hold my head up so sitting there was very difficult.  Eventually the technician came back, checked that my temperature was up, and we were ready to start the testing.  My feet were wrapped in warm blankets in order to get their temperature up as well. 

 

The first tests that she did were nerve conduction velocity (NCV) tests.  She used a marker and a ruler to mark off several points along the right side of my body.  The purpose of this test was to check the conduction paths of my nerves.  One electrode was stuck to my skin at the first point, and then she used a movable electrode to stimulate the nerve.  The pulses got increasingly intense.  It didn’t necessarily hurt, although it was it was quite uncomfortable at times.  The pulses made different parts of my body twitch which was a strange sensation.  A computer measured the time it took for the impulse to travel, and calculated the transmission time.  These tests took about 50 minutes.

 

After the NCV testing was done, the Neurologist came in.  I immediately liked him.  He walked in the door, stood there and said “I bet you’re thinking, who is this fat guy? Well, I’m your neurologist”.  He had me do various things: Squeeze his hand, push my head forward into his hand, push backwards, try to lift my legs (wasn’t happening), flex my foot forward and backwards against his hand, push my arms against his hand.

 

The next tests that he started were electromyography (EMG) testing.  Small thing needles, akin to acupuncture needles, were inserted into various muscles.  The needles were attached to the computer.  Each time he’d have me relax, then slightly tense my muscles.  This caused a fluctuation on the screen as the electrical signal was broadcast on the computer as well as a sound.  Who knew that your muscles made noise! It sounded somewhat like a Doppler ultrasound.  As he did the tests, he continued to joke around.  He said “Am I getting on your nerves yet?” I laughed and said no and he replied, “Actually, I am.  This little needle is right in your nerve!”

 

Once the EMG tests were done, he went to analyze the results, and my mom helped me get dressed.  When he came back, he said I was lucky to have seen the Gastroenterologist because he definitely knew his stuff and said he agreed with his initial diagnosis of Polymyositis.  He said I would need to be referred to a Rheumatologist, then told me to hold tight, and disappeared.  He re-appeared a few minutes later and stuck a post-it note on me.  He said that he talked to the Rheumatologist and he said he could see me immediately…so it was off to the fourth floor to the Rheumatology department.  I was amazed.  Three specialists in two business days! 

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More Bloodwork…

January 26, 2009 at 2:19 pm · Filed under Uncategorized ·Tagged , , , ,

On January 26th, my parents and I headed into the hospital.  It was -37 C.  Very cold!  At this point, my mom was helping me get dressed and bathed as I was unable to do it myself.  We pulled up to the hospital and mom got out to get me a wheelchair.  The first wheelchair she grabbed didn’t have any foot rests.  Because I’d gotten so weak, I was unable to pull my feet up properly and mom kept running over my own feet.  We were overtired and this caused lots of giggles.  Due to the snow, only the side doors to the hospital entry way were opened.  Mom’s wheelchair driving skills lacked something to be desired and we hit the doorway…more giggles.  Once we were inside, we realized we were going to have to switch wheelchairs.  My fingers froze to the metal arm rest because of the cold but eventually I was in another wheelchair and we were headed off to the hospital blood clinic.  The tests were done in two parts, so the first set was to be done in the morning, and the second set 8 hours later.  After the first set, which was about 12 vials of blood, we headed back home. 

 

Now that I finally knew that I wasn’t crazy, there really was something wrong, I finally felt like letting my friends know what was going on.  My friend Michelle was the first person I told…she came over that afternoon with a couple magazines and some chocolate and we had a nice visit. 

 

Later that afternoon, Dad came back and picked us up and we headed back into the hospital.  By this point, we were extremely overtired…and apparently 15 minutes too early.  We sat in the waiting room waiting for the 15 minutes to elapse.  Mom and I couldn’t stop laughing.  I’m sure if anyone saw me, they would have thought that I was mentally challenged.  When I laughed, any neck strength I had went out the window, and my head rolled back.  Mom informed me that she had not forgotten the answers to the sexual history questions from Friday but that she was waiting ‘til I was well again before we discussed it.  At this point we were laughing so hard we had tears streaming down our faces.  What a pair…

 

After another 8 vials of blood were taken, we were headed back home to rest up for the early morning appointment the next day…

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Gastroenterologist Appointment

January 23, 2009 at 12:25 pm · Filed under Uncategorized ·Tagged , , , , , , ,

On January 23rd, I finally had my appointment with the Gastroenterologist.  He was very nice and he got right down to business.  The reason for the referral was the high liver enzyme levels in my blood.  He was very thorough and had lots of questions.  My mother was with me.  While trying to rule out different liver conditions, the doctor had a few questions concerning sexual history…awkward questions to answer when your mom is sitting right there!  I had to suck it up and answer…turns out, the questions were to rule out Hepatitis.  The questions all could have been avoided had my doctor sent over all the blood work results.  How tragic. Hah.  Once I let him know that I had been tested for Leukemia, Hemochromatosis, HIV, and Hepatitis, his focus shifted a bit.  He asked my mother if I always held my head at an odd angle.  I explained that my neck always hurt and I had a really hard time holding it up properly.  He then asked me to cross my arms over my chest, and stand up.  I laughed, and told him it wasn’t going to happen-  I needed to use both my arms in order to push myself up from the chair. 

 

The Gastroenterologist decided to do a physical exam, and came around from the desk.  Once he realized that getting up was really difficult for me, he was on the phone.  At first we had no clue who he was calling.  As he waited on hold, he asked me a few questions… “Do you ever feel like you’re telling your legs to move, and they’re saying “no”?”  For the first time in the two months that I’d been going to the doctors, I finally felt like someone knew what was going on.  As far as “light bulb moments” go, this was one of them.  It was exactly what I’d been trying to explain to my mom when we were at Zellers.  He explained that the “liver enzymes” in my blood could actually be “muscle enzymes” signifying muscle breakdown.  He made several phone calls trying to contact a Neurologist.  Once he got on the line, I could hear him telling the doctor “Possible case of Polymyositis…she’s only 23…very limited mobility”.  This was the first time I’d ever heard of Polymyositis.  Once he hung up the phone, he explained that he thought that I had a rare auto immune disease and had been contacting a Neurologist as it was not his specialty.  He said that he was going to put in a referral to see this other guy and they would contact me.  My mom asked if she should still be encouraging me to go up and down the stairs and lift weights.  His reaction was an immediate “No stairs! No weights!”  He said I shouldn’t be trying to go up the stairs and that my parents should move my bedroom to the main level.  He also said that the weight lifting would speed up the degradation of my muscles.  He sent me on my way with a requisition for blood work.

 

That was the first appointment that I left feeling like maybe we were going to start getting some answers.

 

Within half an hour of arriving home, the Neurologists secretary called:  I had an appointment for Tuesday at 7:30am.  They also had a list of tests to add to my requisition form to have done on Monday.  I was shocked.  Two months to get an appointment with the Gastroenterologist, and here I was with a Neurologist appointment in a matter of days.  That night I enjoyed a glass of wine with supper to celebrate being off medications and finally getting some answers.  The first drink I’d had since early November and what would be my last for quite a while…

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Two Steps Forward…Three Steps Back…

January 20, 2009 at 8:56 pm · Filed under Uncategorized ·Tagged , , , ,

As the time to go back to work approached, I started doing more to try and get my strength back: Going up and down the stairs, lifting weights.  It seemed like the more I did, the weaker I got.  One day coming into the house after a doctors appointment, I collapsed on the front step.  My mom came and opened the door, and I told her I was saying my prayer as I was on my knees in the snow.  I was unable to get up so I crawled into the house, sat in the entryway, then crawled up the stairs to get to my feet.

At some point, my mom decided that we should go out to Zellers to walk around and out to meet my dad for supper.  This was a particularly rough day.  I was pushing a cart to keep me from falling over, but it was like my legs didn’t want to move.  My mother was getting frustrated with me because I couldn’t explain why I could hardly move.  I told her it was like my head was telling my legs to move, and my legs were ignoring it.  We gave up on this little outing after there were tears in the show department.  We went to meet my dad at East Side Mario’s.  We were seated as far as possible from the entrance so I shuffled my way back to our table.  I could hardly even hold my head up during the meal.  It was a disaster.  When we left, I was able to walk out of the restaurant somewhat like a normal person…however, I still needed help getting into the car. 

The most traumatic outing occurred around that time as well.  My parents decided that we were going to take a trip to Sussex to see the ski hill and go for lunch.  That morning, I could hardly get out of bed.  I did not want to go anywhere.  My mom came in and tried to get me excited to out for a Sunday drive.  I could hardly sit up in bed…and the thought of getting dressed to go out was overwhelming.  After a while, my dad came in and tried to get me excited to go out as well.  I finally got up, and got ready.  We drove out to Poley Mountain.  My dad had wanted to have lunch at the ski lodge…I didn’t want to see anyone I knew so we opted to go to another restaurant.  By this point, not only could I hardly hold my head up, but I could also hardly chew.  I’m sure the waitress thought that there was something wrong with me.  It took me about 40 minutes to eat a sandwich and some french fries.  Each fry took about a minute to chew.  When it came time to leave, I was mortified to discover that I wasn’t able to stand up out of the booth.  After a while, I found a way to get up, but I was extremely embarassed that I couldn’t even do something simple like stand up.

The initial point of the doctors appointment on January 20th, was to get paperwork done for my return to work.  However, after another panic attack and more tears on the drive in to the appointment, it was clear that work was not going to be happening that week.  It was clear to myself and my doctor that we were on the wrong track.  The weakness was increasing.  He had me show him how I could lift my arms.  I couldn’t even lift my arms up far enough to touch my hair.  As I lifted, he felt my shoulders and remarked that I had frozen shoulders and it seemed like I had bad shoulder injuries.  At this point, he tried something different.  He pressed on different points of my body: Behind my neck, shoulder blades, behind my knees, my hips, lower back.  At this time, he realized his diagnosis of depression was wrong.  He thought that perhaps it was Fibromyalgia or Rheumatoid Arthritis.  At this point, I was taken off Prozac and another referral was put in to see a Rheumatologist.

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Jan 5th…Not back to work as planned…

January 5, 2009 at 8:32 pm · Filed under Uncategorized ·Tagged , , , , , ,

Christmas came and went…as did New Years.  For the first time in my life, I didn’t even go to church on Christmas eve as I wasn’t feeling strong enough.  The whole holiday season was very quiet… I hadn’t really told many people besides a few friends at work that I had been diagnosed with depression.  Most of my friends didn’t even know that I was back staying with my parents or that I was off work. 

During this time, my friend Shannon got married last minute on New Year’s eve.  It killed me to not be able to go…but at that point, I could hardly get out of bed.  I didn’t want my friends to see that I couldn’t go up the stairs at the church, or have to explain that I wasn’t joining in on the champagne because I was taking Prozac.  

January 5th was the day I was scheduled to go back to work.  However, the week before I found out that in order to go back to work on a modified schedule, I had to get a bunch of paperwork done.  So, back to the doctor I went to another doctors note to prolong my leave of absence until I could get my paperwork squared away.

My blood work from December 17th showed negative for all types of Hepatitis as well as HIV.  It appeared we were back to square one.  As sad as it sounds, I was hoping that the hepatitis was going to be positive just so that I would know what was wrong with me. 

My doctor decided to keep me on the Prozac as I appeared to be improving.  He gave me a doctors note to keep me off work another couple weeks and told me I should be hearing from the gastroenterologist for an appointment soon.

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