A Great Christmas Present

Can’t believe it’s been over a year since this all started…

The last year and a bit has been pretty crazy.  In the span of 18 months, I graduated, moved into a new place, started a new job, went on sick leave, almost died, moved in permanently with my parents, went back to work, got a promotion….

So here we are. December 16th, 2009.

It has been decided, that I don’t have polymyositis.  It appears that I actually have an extremely rare genetic disease.  At the end of October, I finally had my appointment to go see the Geneticist at the IWK Hospital in Halifax, Nova Scotia.  Spend a few hours there going over my entire health history….from the time my mother was pregnant with me til present day.

At the end of the appointment, I was had the standard battery of muscle/strength tests and then was sent for more specialized blood work.  A blood sample was taken to be sent to Buffalo, NY for DNA testing which should be back in the Spring sometime.  They are testing for 3 of the “most common extremely rare genetic diseases”.  If nothing shows up in those tests, then another biopsy and a complete DNA sequencing will have to be done.

On Monday of of this week, I went to see my rheumatologist to go over blood work from the past 3 months and for my check up.  I had been super happy for the 3 month reprieve…and only had to do blood work twice in between and one other doctors appointment.

We talked about my trip to Halifax and I’d asked if he’d gotten the letter from the geneticist stating that in his opinion, I didn’t need to be on Methotrexate.  I gave him the Reader’s Digest version of what he said and he went to check back from my last appointment.  In September, he had cut me down from 6 pills every Saturday to 5.  I told him that the Saturday before my visit, I’d only taken 4 because I had been hoping to not have to refill it…. He looked at me and I thought he was going to say  ”keep dreaming!” but instead he said “well then, you’re done! Have a few drinks tonight to celebrate!!”

So I am officially off Methotrexate. A little under 11 months since I started taking it.  Today makes a week since my last dose.  It had some pretty nasty side effects….I am now a glasses wearer, whereas before, I had great vision.  I’d been losing my hair.  I couldn’t be in the sun.  Couldn’t drink more than a drink or two. And had developed sensitivities to different foods that had never bothered me.  Most notably: onions.  Which would leave me running for the bathroom generally within 10-15 minutes of ingesting anything with them, or containing onion soup mix.

I’m looking forward to not having those side effects to deal with….

…now I can really enjoy Mexico to it’s full potential in 3 weeks

Back to the Grind!

On April 6th I went back to work!  I was really excited to be back making money and seeing my work friends again.  My first two weeks were on a modified schedule: 5pm-10pm with Thursdays and Fridays off.  On the 20th, I went back to my normal shift so I’m working 5pm-1:30am with Thursdays and Fridays off.  It’s not bad.  At first I was worried about how tired I’d be by the end, but it’s alright.  With the shift not starting until 5, it allows me to not have to worry about when my doctor’s appointments are…most of the time.  I’m also able to pick up extra hours before my shift to make back some of the savings I went through while I was sick!

 

I went to see my doctor again on the 8th.  He didn’t really have a whole lot to say except that he was really pleased with my progress.  Starting tomorrow (April 23rd), I will be decreasing my Prednisone dosage by 2.5mg every two weeks.  At this rate, I should be off them *crosses fingers* by July 16th! 

 

My parents have been away for a week now, and I’m still alive, so I’m able to take care of myself which is good to know. Hah.  I’m even doing housework and grocery shopping like a grown up again.

 

I finally got a call from my neurologist’s office this week.  I will be going to Halifax to see another neurologist on May 4th.  Unfortunately, the timing of the appointment made it such that I needed to get a day off work.  Thankfully, my employer was very accommodating and immediately gave me the day off. 

 

Hopefully the trip to Halifax will give me more information about what’s going on…

EI Saga

When I got sick, I was 2 weeks short of being done probation at work. That’s when my benefits would have kicked in. By January, we realized that my return to work wasn’t going to be as soon as I’d anticipated. At this point, it was decided that I would have to apply for Employment Insurance sickness benefits. I had to get my record of employment from work, as well as a list of how much money I made each week I had worked. There was a lot of paperwork to do. I also had to have a bunch of paperwork filled out by my doctor. In short, it was a pain in the ass. Anytime I tried to call to get more information, I got an “all circuits are busy” message, and then it disconnected. When I tried going online, it was asking me for 4 digit access code. However, I only had a 7 digit code. When I finally got through to someone, he let me know that they should have sent me the 4 digit one instead and that’s why I was unable to access the telephone system or the online system. Also, the system had 3 entries for me. Each time I had started and the system had told me the application had timed out “please start again”, it had logged that application. At the beginning of February, I faxed in my record of employment. Near the end of February, I had a message on my online claim saying they hadn’t received my ROE. At this point, I was starting to be a little more steady on my feet, so the first week of March I headed into the office. I brought the fax confirmation with me to show them that I had indeed faxed it to the correct fax number. At this point, they told me there would be a decision on my claim by March 26th. I checked my claim several times a day. Finally March 26th came…and went. By the 27th, my claim now said a decision would be made “as soon as possible”. On the 31st, I finally got through on the telephone to talk to someone to see if they could tell me when my claim would have a decision. They told me I’d be called before the end of the day Thursday. Thursday at the end of the day, I called again and they said they were going to have someone call me by the end of Monday. Friday morning at 8am, I got a phone call to let me know my claim was denied because I didn’t have enough hours to qualify. I had 330 hours and I needed 600. The only reason I didn’t have enough hours is because I’d stopped working to finish my degree. I’m going to appeal the decision because well, what have I got to lose. I paid into EI for 9 years. For 8 of those years I had enough hours to qualify and the one year I need to use it, I don’t qualify…what a joke.

Moving On…

Still haven’t heard from my doctors…but everyday I’m making a little bit of progress.

 

The biggest excitement of the week is that I’ve finalized my back to work plans! April 6th.  The first two weeks I’ll be on a modified 25 hour work week, and then after the 19th, I’m back to my 40 hour weeks!

 

Last night, mom and I went to Starbucks and the movies.  This little trip would have been panic attack inducing just a few weeks ago…icy parking lot, stairs in the movie theatre lobby, and low seats in the theatre.  However, it was no problem! 

 

I’d hoped to start doing a bit of working out on the elliptical trainer upstairs.  Unfortunately, the one foot step up onto the machine is still a little more than I’m able to do right now.  So I’ve settled on the Nordic Rider. Haha.  I’m also trying Yoga.  Mostly just the standing positions as I’m still hesitant to get down on the floor even though I’m quite sure that getting up wouldn’t require a spine board anymore!

 

Things are going quite positively…

 

• My leg is still continuing to heal well.

• Going up and down the stairs is a little easier each day.

• I’m much more steady on my feet.

• Getting into the shower doesn’t produce massive bruises on my shins.

• Since my steroid dosage is a little lower, I’m not ravenously hungry all the time (just some of the time…haha)

• The sore spots on my scalp have decreased.

• I’m no longer short of breath or constantly yawning.

• My heart doesn’t race.

• My mind doesn’t race quite as badly as it had before.

 

The only negatives…

 

• Hair is growing on my face where I don’t want hair.

• Hair is falling out of my head where I’d like it to stay.

• My face is still breaking out and I have skin problems along my hair line.

• Still having random nightmares that wake me up at 5am.

• My nails are brittle and they have deep ridges so I’m constantly buffing them.

 

This afternoon I’m heading off to do some more packing at my condo.  I’ve got most of my stuff out of the kitchen and pantry with the exception of some pots and pans that I’ve left for my roommate to use.  My parents will be going on vacation in the middle of April, so I plan on being completely out of my place by then.  A lot of my stuff will be put into a storage unit, and the rest will come home.  It’s still overwhelming to be packing everything up (especially since its been less than a year since I moved in, and I’d planned on staying there a long time) but sometimes things don’t work out quite to plan…

I’m Special

Yesterday I got a call from the Neurologists office asking me to come in for some tests and stuff.  This morning, my parents and I headed into the hospital.  No wheelchair!  It was quite a hike from where we parked to where I had to be (the EMG clinic).  However, I made it without falling or passing out.   I ended up getting into my appointment about forty minutes too late.  When my doctor came to get me in the waiting room, I got up and walked out to the hall.  He looked at me and said “Well, I’m liking what I see already…I saw how you got up from that chair. Wow!”  Last time he had seen me, I definitely wasn’t getting out of a chair by myself…I wasn’t even able to get out of my wheelchair by myself. 

 

The doctor started off by asking me questions about what I’m still having trouble with.  Right now, I’m doing quite well.  Stairs are still a bit of a challenge- I can do them, but there needs to be a railing and I’m definitely not running up the stairs.  He asked where I thought I was as far as my normal self, and he was quite pleased to hear I was at about 75%.  He then asked about the side effects I am experiencing from the medications- acne, weight gain, hunger, racing mind.  All of which are still there, but definitely have improved since my steroid dosage has been lowered. 

 

The neurologist did some strength testing and remarked that I’d make extreme improvement since he’d seen me in January.  He tested my reflexes, my ability to push against his hand with my head, with my feet, my arms, and how well I could keep my arms up while he pushed down.  He also checked my reflexes and eye movements, and scratched my skin with a safety pin to see if it felt the same on both sides.

 

Once we were through with the testing, he started telling me what was going on and why I was called in for more tests.  He asked me what my rheumatologist had told me last week.  So I repeated that the pathologists in Halifax had discovered markers on my muscle tissue indicating beta-oxidation. That they had suggested that I have a lipid storage disease or a metabolic myopathy- something even more rare than Polymyositis.  However, they still weren’t ruling out Polymyositis since I was responding well to treatment.  My neurologist let me know that they are hoping to hear from a couple neurologists in other cities.  Unfortunately, one is on vacation and one is off sick right now, so he hadn’t spoken to them yet.  The other neurologists specialize more in nerve and muscle diseases and would have more insight into the genetic disease aspect.  Apparently I will have to go to another city: Halifax, Quebec, Toronto, or maybe Rochester, Minnesota…those were the ones he mentioned.  I’m hoping for Halifax as it would financially be the easiest as the others would require flights or extremely long drives.  The neurologist mentioned that I may have to go to a genetics clinic to learn more about what’s going on.  However, he also said that this is the type of case that makes people want to come to work in the morning for.  I’m interesting.  This is why things seem to be moving along fairly quickly…whereas most of his other patients, wait three years to see him and I saw him within 2 days…

 

Anyway, I still need to wait for that call, but in the meantime, I have an appointment on April 28th for an echocardiogram to make sure that my heart is still fine.  I headed off with all my paperwork to the blood clinic.  I caused quite a backup at the blood clinic- the requisition was so different from things they usually see there that it took several phone calls to make sure it was being done correctly.  Carnitine tests had to be put in special tubes…special colored stoppers.  Some tests were put in Sodium Heparin tubes, while some were put in Lithium Heparin tubes.  And then I got to pee in a bottle.  Gotta love peeing in a bottle.  Ick.  My urine is on its way to the IWK Health Centre in Halifax, and the blood is on its way to the Mayo Clinic in Rochester, Minnesota.  I’ve always wanted to visit the Mayo Clinic…now my blood gets to go, I’m a little jealous. 

 

Hopefully, there will be some sort of Dr. House who will figure out exactly what’s wrong with me…

New Blog Name?

Went to see my Rheumatologist today.  I was able to get out of the car and walk into the hospital- without a wheelchair.  I went up to the 4th floor rheumatology clinic and the secretary said it was great to see me walking again.  She gave me the questionnaire I’d filled out the other few times- What aids I used (None! I’d been able to stop using the raised toilet seat the night before and had moved upstairs to my own bed.), what I wasn’t able to do (chores…hah, and had some difficulty with stairs, but other than that, I could drive, bathe, dress), and where I had pain (minimal shoulder pain).

 

When the doctor came to call on me, he was amazed to see me not in a wheelchair and dressed in normal clothes.  We went down to his office, and did all the tests he’d done the other times: Pressing up against his hand, holding my arms steady while he pushed down.  I was able to do this, whereas last time I hadn’t even been able to lift my arms up.  I was able to lie down on the exam table, and lift my legs and hold them up, as opposed to not being able to even lift them.  When he had done all the tests, I was able to sit up without the help from my dad or the doctor.

 

The doctor was impressed with my progress.  Hell, so was I.  He let me know that the pathologists working on my muscle tissue had found markers for a rare metabolic myopathy.  A lipid storage disease- a genetic thing.  Neurologists / Rheumatologists in another city were looking into it.  Not really the ideal thing I wanted to hear, but I was happy to know that even though I was showing progress, they were still trying to figure out exactly what was wrong with me.

 

The Holter monitor results showed increased heart rate, but when he took my blood pressure, it was fine.  So there was nothing to be worries about.  My enzyme levels were much better- almost normal.  The blood tests also showed positive for ANA- an antibody present in autoimmune disease, so he said they weren’t ruling out Polymyositis. 

 

Before sending me on my way, he informed me that I could start cutting my steroids by 5 mg every week until I reached 15 mg.  He was going to raise my methotrexate dosage, but decided to wait a few weeks before doing that.  He also said that I could go to get my blood work done every 6 weeks, instead of every 2! Yay!  Give my poor little arm a little break…

48 Days

48 Days.  The time since I was last able (with great difficulty, however), to sleep in my own bed on the second floor.

I am proud to say, that as of tonight, I am sleeping in my own bed and not on a single bed in the living room.

Healing Fantastically..

Biopsy Scar on my Thigh - 40 Days Post Op

Behind the Wheel…

I’ve started getting a little cabin fever.  Since I’m feeling a little better,  I’m wanting to try and see what other things I can do.  Today I decided it was time to get behind the wheel for the first time since November. 

 

I decided that I’d go to Tim Horton’s…it is Roll-Up The Rim time, after all. Haha.  It was so great to get behind the wheel and sing at the top of my lungs all the way to Tim’s.  I picked up coffee for mom, and hot chocolate to me.  When I got home, I was able to hold my purse in one hand, the drinks in the other, and walk up the steps…the steps that only a few weeks before I couldn’t even walk up with the assistance of my parents…I needed my dad to physically lift me into the house once I got to the top.

 

I didn’t win anything with the coffee, but I was so stoked to have been able to go get it myself, that I didn’t care…

Big Day For Progress

Since I’d discovered that I was able to physically leave the house without assistance (meaning, I was able to tie my own shoes- now without having to sit down, and go down the mini stairs into the garage), I jumped at the chance to go out for lunch with my friend Curtis.  I called my mother up to let her know that I was going out.  She was shocked! Curtis came to the house, and I proceeded to shock and amaze him as I stood in the laundry room and tied my shoes and put on my own coat.  This was a feat that had seemed pretty far off only a few weeks before.

 

I walked down the garage steps and out the garage door.  This involved climbing up a mini snow bank and navigating some icy patches- and I didn’t even fall!  I was beaming by the time I got to the car and was able to get in somewhat normally!  We got to the restaurant, and I got out of the car normally as well.  Once we placed our order, we sat to wait as we’d decided to take it home.  When the time came to go, I was able to get out of the booth with only minor difficulty- a far cry from the embarrassing ordeal I’d had while out with my parents. 

 

After my mom had returned home from work, and Curtis had left, I got back to my normal routine of watching HGTV. Hah.  Mom was yelling down from the master bedroom to ask questions on how to find a missing icon on the computer.  I was yelling up to tell her how to find it.  Eventually, she said never mind, she wasn’t able to find it.  I decided that I would see if I was able to manage the stairs.  Without yelling up to tell her I was coming, I started up the first couple steps- it was surprisingly easy.  I made it up the entire flight of steps with less effort than I had in at least the month prior to my stair ban on January 23rd.  I tiptoed down the hall, and walked into my parent’s room.  Scared the heck out of my mom, but she was definitely impressed.  I hung out with her upstairs and was up there when my dad came home.  He was quite shocked to find me upstairs sitting on his bed.  When it came time to go back downstairs, I managed to make it down fairly easily without falling (which had happened once or twice before my doctor had told me to stop doing stairs).

 

That evening, I decided that I had had enough of sponge baths, and now that I had discovered my ability to navigate the stairs, I was going back up- to shower!  Before going upstairs, I informed my parents that I thought I was ready to get rid of the power lift seat on my chair.  They said they’d take it off while I was showering.  My shins still showed dark bruises from where my leg would always hit the ledge of the tub getting into the shower.  I was pleasantly surprised to see that I was able to get into the shower without hitting my leg.  I was also able to wash my hair without too much difficulty and get out of the shower again without hitting my shin- I was on a roll.  Showering was amazing!  I was so stoked at the progress that I’d made.  I was tempted to start sleeping upstairs in my room.  However, I was still a little wary of navigating the hall at night if I had to get up, and the bathroom downstairs was modified with a higher toilet seat rental from a local pharmacy whereas the one upstairs wasn’t.  I decided to save a little progress for another day…