A new fashion statement?

Well, I best be explaining what's been going on for the longest time. At least it feels like a long time.

I'm still not feeling any better and my mobility has definitely been impacted significantly. I guess I should give a true explanation of what's going on ...

When I was in grade 9 I started getting these weird pains in my knees all the time. I went and asked my doctor about it and he said I had patella-femoral syndrome. He sent me home with a pamphlet about it and told me if I needed physio I could have it.

Patella-femoral syndrome essentially is on normal people your knee cap is smooth. On me, the underside is jagged and the cartilage is as well. So when I bend or move it catches and tears. I also have a tendon that pulls my kneecap the wrong way. So the knee cap, instead of moving up and down normally, tends to move somewhat diagonally and off to the side. 

It normally causes moderate pain that you can continue daily living through. It's more of a pain (literally and figuratively) than really anything else. 

So I dealt with it for many years. I finally got fed up with the pain after seeing my doctor and started doing physio. Physio had no positive effects. So I saw an orthopedic surgeon. He immediately recommended surgery for me. I felt that was more than a little drastic and chose to wait another few years before worrying about it.

The surgery was described to me as a "lateral release". Essentially they go in, sand the kneecap and the cartilage down, and cut the tendon so that it starts to move into the proper place. It's day arthroscopic surgery and they send you out on crutches. I was told by my surgeon that it was basically a 33% chance of success with it. He said and I quote (I can't believe I remember his exact words all these years later) "For some people it works and works well. For others, it works for a while and then hurts again. For others, it just doesn't take". This was my main reason for leaving the knee for a while. I didn't feel it was that bad that I needed to be cut open and with no guarantee that it was going to work, be danged if I was going to do it.

Finally, when I was in my 3rd year of university ( 6 years after being diagnosed and recommended for surgery), I gave in and went for the surgery.

I remember being petrified. I'd had surgery before, I had ovarian cysts removed when I was 15. I remember I went to my university classes as I didn't have to be at the hospital until 11am, so I went to my first 2 classes of the day and then left. Be danged if I missed one of the most important lessons in my phonetics class which messed me for the rest of the semester. I remember people being amazed that I could sit through class and be focused while knowing that in a few hours I was going to be cut open.  I figured I might as well go...sitting at home wasn't going to do me any good while being at university might!

So a cold day in November of 2003, my dad picked me up from university and took me to Victoria hospital. I got in there and bust out crying from fear. They started the prep, and my doctor came in to say hi. He "autographed" my left knee so that he could remember which one to cut. Then the anesthetist came and gave me the choice of a spinal anesthetic or general. My parents convinced me to have a spinal as they figured I'd get out of the hospital quicker.

Worst decision ever. The spinal was the worst part of the whole surgery. The anesthetist came in and started doing the spinal. When he stuck the first needle in I guess he hit a nerve because my back contracted, I jumped and cried out in pain. Then the jerk yelled at me not to move. Well sorry buddy! When you stick a needle the size of my forearm into my back and expect me not to move... you've got the wrong idea!

All I remember of the actual surgery was a bit of the doctor and nurses talking while they continued to prep me. I fell asleep and woke up on the way to recovery. They told me I couldn't leave the hospital until I could move my feet. So I made a game of it. I tried desperately to move those feet!

Eventually they let me go with crutches. They said I could walk on the leg but best to stay on the crutches for a while. The actual surgery wasn't a huge deal to be honest. I wasn't in any huge amounts of pain and started to walk 2 days later. I had the surgery on a Thursday and was back to student teaching and school on the Monday. 

But, that surgery never took. I guess I was that group where it never works.

So, I dealt with the pain for a few more years and then went back for more physio. When that didn't work I saw my orthopedic surgeon again and he decided he wanted to do the surgery again. I wasn't too thrilled about the idea again. Especially when he said that if I had it, then he couldn't do it a third time and then there would be nothing more he could do for me and I'd have chronic pain the rest of my life. I put off the surgery again until I just couldn't handle the pain anymore.

So in 2006 at 4am I got driven to Bethesda Hospital in Steinbach. I got sent there because apparently the hospitals in the city had a 6 month waiting list and Steinbach had 3. I have to say I LOVED Bethesda Hospital and if I had a choice of hospitals I'd go there again. The anesthetist was fabulous! He thought I was going to be worried about the surgery but since I already knew what I was in for I wasn't the least bit upset. The only thing that worried me was the anesthetic. I was petrified they were going to give me another spinal. I was thrilled when the doctor said that Bethesda has a policy of not doing them unless they have to. They said they were going to put me under a light general. Loved it!

So I had to be at the hospital for something like 6am so we had to leave early. I got there and the staff was fantastic. The nicest nurses I've ever had in my life. They truly treated you like a person and not a number. They truly cared. My doctor came in and looked at me and said "I don't know if we're going to do the lateral release today, but I'll go in there and do something". Way to instill confidence in you doc. 

So they took me to the OR. I woke up on the way back to recovery again, and was actually able to speak to my doc as he filled in my chart. They did the lateral release again. Another 2 hours later and I was able to go home. I used the crutches for a day and was walking the next. This time was a bit different as I was a waitress at the time and I had to take 6 weeks off work to recover, which drove me nuts.

A few months later I happen to be watching the news and they had one of those teasers "An arthritis surgery for knees has been proven not to work, find out which one coming up". So of course I had to watch. Yep, it was my surgery. There was a news article in 2006 stating that the lateral release was disproven as a valid surgery for my situation and for arthritis. The study found that physio worked just as well in patients where the surgery would take. So basically, I did the surgery and lost at least a grand in wages and tips for nothing. I was pretty pissed.

So bring it to today. I've had knee pain ever since as this surgery didn't take either. As I did before both surgeries I've just kind of dealt with it. I've taken advil when it gets really bad and avoided strenuous activities or activities that use a lot of knee work.

April 12 was the last day I worked out on the elliptical. I had a great workout. Nothing about that day gave any indication of what was coming at me. I worked in the morning as I always do, worked out in the afternoon, cooked dinner... and by about 7pm my knee was hurting. Not a huge deal, when it hurts it's usually at night but goes away over night. This time it didn't. The pain kept me up all night.

So I went back to work the next day using my Dad's cane. It helped a bit. I came home and rested for a while, still figuring that the pain would die down overnight. Still wrong. So the 14th of April I went to work just hobbling around. I figured it had to be easier than the cane. Stupid stupid STUPID thing to do. I went to a medical supply place that night and bought a pair of crutches.

I had an appointment with my family doctor for the 15th so figure out what was wrong. He looked at my knee, felt it, moved it and was fairly grossed out from the faces he made. (Not by the size of my thighs either thank god!). Whenever he moved my kneecap it made this horrible grinding and clicking noise and hurt like heck. I told my doc that I couldn't put any weight on it without considerable pain and that I wasn't quite sure what was wrong.

He said that he wasn't sure either but he figured it wasn't the patella-femoral, that it was something more serious. He put me on naproxen for the inflammation and told me to stay on the crutches. He also said he was sending me for an MRI.


So I was a good girl and took my meds and stayed mostly on the crutches for the week. I say mostly because I'm a bloody stubborn person and hate being dependent on other people, so I was still trying to do a lot of things around the house on my own. I was still doing laundry, cooking... cleaning a bit.. I was stupid. I admit it. Very stupid.


The pain kept intensifying. I didn't let on to anybody exactly how bad it was. To be honest, the pain was and is worse than either of the surgeries were. I just felt that admitting I was in a lot of pain was a weakness and people would baby me. I can't handle being babied so I really just wanted to play it off and be superman.. try to do it all.


It didn't work. 


On April 20 the pain was so bad I could barely get into the shower and was in tears, sobbing from the pain afterwards. Dad finally got pissed off and told me I was going to be going to Pan Am Clinic in the morning.


So off we went. I sat in the waiting room for about 3 1/2 hours which isn't bad at all. I went off for x-rays and then saw the doctor. He made me get on the examining table which was a huge and painful feat. He felt my knee, felt the clicking, saw my restricted movement.. and came to the complete opposite conclusion as my family doctor. He said it WAS the patella-femoral and that it was just a bad flare up and I'd better be prepared for this to happen often. He said the MRI wouldn't show anything and was a waste of time. He also said there was no point getting another knee brace (I've had several over the years) as my kneecap was too small for a brace to grip onto. He sent me home with a note taking me off work for a week and instructions to stay off of it, to stay in a wheelchair. He also sent me home with a prescription for celebrex and something called tramacet. Wowza does tramacet screw you up. I was high for the whole week I was on it. I honestly don't remember much of that week.

The week went by and the pain was still intense. I made a follow up appointment with my family doctor as the doc at Pan Am said he didn't want to see me again as he figured I'd be fine after the week. Well, I sure as heck wasn't.  April 29 I went and saw the family doc again. He wasn't impressed that the other doc put me on the meds that he did and what he said. I guess because it completely contradicted what he said. My family doc told me to stay in the wheelchair until I had the MRI and they knew what they were dealing with. He also took me off all pain meds and told me to take extra strength advil if the pain got really bad. He also told me to go get a new knee brace. Going back to work was my decision. I could go if I felt up to it but if I didn't, he would take me off work ... essentially going on disability although I'm still not sure if I even have disability coverage at work.. I chose to go back. I can still do my job from the chair more or less. I can no longer do lunchroom duty or any recess duty but I can still watch over my buddy. (I work as an educational assistant in an elementary school in the mornings only). 


So that basically brings me back to present day (dang this is getting long!)


The pain is still incredible. However, on the 6th and 7th of May I started feeling a bit better. Dad and I had this agreement that if I felt good for a few days I could try the crutches again.
Saturday the 8th I tried the crutches. Not bad.. I survived. Sunday I stayed in them. But, as always, I over did it. I did laundry (Dad carried it downstairs but I hopped back and forth washing stuff), I cleaned, I tried to cook... I was in pain by the end of the day but just sucked it up.
Monday I went to work on the crutches. I truly hoped that this was the beginning of a progression back to walking. Work was tough to get through. I was really sore by the end of the day. But my day wasn't half over. Dad had a procedure at the hospital that I had to take him to. So I had to hop from one end to the other of Concordia hospital twice which was painful and exhausting. From there it was off to mom's for mother's day celebrations. By the end of the day I wanted to rip my leg off.


But, being Ms. Superwoman, I wouldn't give in. I went back to work on Tuesday on the crutches. Only to be told that there was a field trip to the Concert Hall that day. Nobody told me about it ahead of time! So I hopped around the Concert Hall all morning. I was near tears by the time I came home. 
Back into the wheelchair on Wednesday.


I've been back to it ever since. I over did it. I big time over did it. 


But I did get some good news on Friday the 14th. They've put me on the "urgent" list for the MRI. My doc's nurse said that I should have an appt asap. I had called the day before wondering when the appt was going to be as it had been a month and I didn't even have a date for it yet. I was wondering how much longer it would take for me to even find out when it was.. not have the test but just find out WHEN it would be. So hopefully being on the urgent list will get this thing in motion quicker and get me fixed up.


The pain is interesting to describe. On the bottom of my kneecap it feels like someone's gouging it out with an ice cream scoop. On the sides, someone's sticking knitting needles in and messing around with them. At the top, someone's stretching the tendon out like taffy, and on the back of my knee someone is punching it repeatedly.
(I'm good with metaphors lol). It hurts like hell to be honest. And it hurts ALL the time. There's not a moment's relief from this, although some moments are worse than others. 


I have to admit I'm scared about what could be wrong. I've done research on various knee conditions like torn ACLs, minicus tears, arthritis, loss of cartilage etc and nothing seems to really describe what's going on. A small piece of me worries I'm going to be like my father.. ok one day, screwed the next.. and all due to a cancerous tumor. I try not to think about that part much because I think that's being a bit melodramatic. But, I really am scared. I've never had pain like this before and I've never been this laid up before.


I worry a lot about the future too. How much longer is this going to go on? What am I going to do for work? My job ends the end of June. I have no work lined up for the summer and nothing for September. Being in the chair really complicates that as I have no idea what's going to happen. Are they going to figure it out and have me well enough by July that I can find a summer job, or do I have to try to live off of my meager savings? Am I going to be better for September? Will I be able to find work in education or will I have to move on to something else? If I'm not better, and I'm in the chair.. will I be able to find work that's wheelchair accessible? Will I be able to find someone who will hire someone in a wheelchair? Will I even find work I'm qualified for? 
The chair and this just complicates an already stressful, complicated situation. I had given myself a deadline of having a teaching job for September and if I didn't have one, I'd try to find a non educated related job as I have to start saving up, I have to move out. I've got to become an "adult". 26 (almost 27) is too old to be at home with no money.. it's time to grow up.


But can I grow up if I'm impeded by the chair and my mobility? I require a lot of care at the moment. I don't know, but I can't help but worry and stress about it a bit.. as I always have.

I'm also stuck in the house which is killing me. I've never had a huge social life, I'd get a few invitations to go out sometimes but now it's all completely dried up. Nobody wants to hang out or go out for drinks or anything. It's too hard for them to help me with getting the chair in and out of the car and to worry about things being wheelchair accessible. Today dad took me to dollarama which was HUGE as it was the first time I'd been out of the house in a month other than to doctors and work. Right now even going to wal mart would be a treat *sigh*. Hopefully this all clears up soon so I can get back out and have some fun again, because being trapped in the house all day and night really is boring and SUCKS.


So that's the latest and most comprehensive explanation of what's going on. It's long, and hopefully made some sense.. but the condensed version is, knee still hurts, still in chair, still no diagnosis. 


As I said on Facebook one day... come on health care system.. get to it and start to CARE about me. Until then, I get to go around with the newest fashion statement... coming with your own set of wheels! What man wouldn't want that!