More tests...

In the last few months I've had doctors and nurses , lawyers and physiotherapists wonder why I was still in as much pain as I am, even after the surgery I had that was supposed to fix at least my neck and all pain related to it. It was brought to my semi-retired surgeons attention the amount of pain I was in and the prescribed drugs I was taking for the pain. He wondered the same thing and ran me through a battery of tests all during my kids Spring "Break". I had an MRI, CT scan, bone scan and x-ray done during that week. We all waited for my surgeons opinion after all the tests but heard nothing from him. During this time, I settled with ICBC and was/am happy to get them out of my life. Meanwhile, my physiotherapist looked at my tests and saw something so she sent a note to my doctor to let me know. My MRI showed that I still had a bulging disc, though not as significant as before, still present. Finally I had something confirm the pain I was feeling, and, good or bad, I had already settled with ICBC, so now I'm on my own with this. My regular doctor is recommending prolotherapy on my neck and the date set for that is June 7th. Not sure how that will help my bulging disc. Guess we'll find out.

Hello ICBC

   I am still in the process of dealing with ICBC about the accident I was in, which has permanently changed my life and the lives of everyone around me. Because of that ICBC now knows about my blog dedicated to all the tragedies I've endured resulting from the accident. Now I wish I was on here more often and poured my heart out from every depth so that they could sort of understand how severe this has affected my life. I just couldn't focus on all the negative as I'm sure I would have committed some sort of suicide by now. One just can not live that way and come out the other side at least alive.

   So I'm going to copy and paste something on here that I have already posted a link to. This describes VERY effectively how I now have to live my life without spending the time going into every detail of my life.

SO IF YOU ARE ANY KIND OF ASSOCIATE FROM ICBC PLEASE READ.

I also suggest some education around Chronic Pain and all it does to a person. Since I'm sure you have dealt with many others and I'm sure more to come who have had the same life altering change as I have, I feel that it is ICBC's obligation and anyone who works for them to know a whole lot about it.


Here is the best description that I have ever found to describe my daily process...

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino

Surgery isn't a quick fix...

Well, one thing I've learned is that the surgery is definitely not a quick fix. I am still living with Chronic pain eight months later and have been told numerous times from doctors that this is now a life long thing. I didn't want to accept that. But the more I refused to accept it, the angrier I got. That in turn makes the pain worst, tightens muscles etc. I am now on the road to trying to accept this life change. There are things that I just can't do and I have to accept that, there is also a lot that I can. What I can do is what I have to focus on.

I have nerve damage in my neck running down my entire right arm and hand from waiting for the surgery I needed, that is the one thing that will never go away. I also have problems with my hip, lower and mid back. All of this on my right side. I do have hope in a prolotherapist. Problem? The cost. It is not covered by medical because it is not a mainstream therapy. I fully believe it will help me one day, we just have to wait for the cash to do it.

My scars from the surgery are fading. The incision on my neck was done right on my crease so it is blending pretty well. The one on my hip is kind of ugly though, but with all the stretch marks from having kids, who's gonna notice, right? :)

I have a gazillion appointments I have to keep up with for myself. I get overwhelmed and almost forget them sometimes. Especially when I'm trying to remember all of my kids appointments.

I can't miss my physiotherapy appointments though. They keep my body working so I can keep doing what needs to be done. Every Tuesday and Friday. My physiotherapist has had to deal with me so long she knows exactly what to do to get the job done. She's great. :)

Coming Home

Coming home was SO uncomfortable. It was so painful to drive the three hours with a neck fusion that wasn't healed. The best thing I could do was tilt my chair pretty far back so the bumps didn't affect my neck as much. When I got home the girls weren't home yet. I missed them so much and the wait for them to come home was just as bad as the drive I think.
Once I was settled in my husband had to go back to work and my mom lived at my house until I could do things on my own again. She lived with me for three weeks. She drove my kids to school and dance. Cooked, cleaned, looked after my son who just turned 4 three months earlier.

I didn't have my first real shower until about 8-9 days after surgery. It was an exciting day when I was allowed to. Sponge baths just don't cut it. I had to wait until the bandages had come off on their own. The stitches were on the inside.
This was after the large bandages could come off but before the small ones were off. You can see there was a lot of bruising from the surgery.



This was the incision on my hip, which is still quite swollen. They needed to take a piece of my hip to put in my neck for the fusion. (ignore the stretch marks, from kids :p)

I also had to wear a collar every time I was in a vehicle to stabilize my neck. I wore this for almost three weeks.

And I was on Tylenol 3 and a heavy anti-inflammitory for pain.

Surgery Day and Stay in Hospital

Here I am, laying in a hospital bed waiting for the surgery to start. Putting on my brave face for my son. He iskissing my IV because as he sees it, it's another owy.

I was actually just getting over a cold when I was waiting for surgery to start. I had a slight cough and my throat was a little swollen on one side and sore. I was so worried that they would cancel the surgery because of it, didn't want to wait any more. They went ahead, not really knowing I was feeling that way, I don't reccommend doing this, unless of course you live in Canada and already waited 3 years. (add a little sarcassim)

They had me in the operating waiting room after that where a nurse asked a few questions about the operation just to make sure I knew what was about to happen. Then my doctor came to my bedside and went over things again with me. I asked if the pain will be as bad as the flare ups I had and he said he would be surprised if it was. That reasured me, tired of the pain.

This brought me to the operating room. The guys all introduced themselves to me while I was laying on a freezing cold bed with no blanket preping me. The anathegeologist was sticking cold monitors on me and asked if I was having fun yet. lol Another guy said, 'looks like you got the all guy room'. They put a mask on me and told me they were just giving me extra oxygen at which point I looked at him with a dirty look thinking I ain't falling for that. I hear him say 'nice deep breaths', started to feel very tired all of a sudden, then I was out.

Me with an oxygen tube, Mikhail (my son) in the background checking the monitor.

When I started to wake up my hand went immediately to my neck. It was so painful. The nurse stopped me from grabbing my neck so I asked if I could have something for it. She rolled up a small towel and placed it under my neck, from then to about day 5 that was my pillow.

My son giving me another hug :)

No, not a flattering photo of my AT ALL. Here I am with my 'pillow'. The rolled up towel was the only way I could tollerate the pain.

This was the incision area where they performed the surgery still bandaged up.

and the lovely slippers I got to use.

My son helped me through this more that he will ever know. <3

I had to get up and try to walk after the surgery. I knew I would do better if I did. My son liked to go with me.

Dinner, I remember having a hard time eating this. I was really hard to swallow after the surgery for about three days. I felt like I was choking on my food.

my 'help' button.

Bruises from the pain shots they were giving me. They were not to gentle with those.

IV

My water and the Juice I saved for when my son was coming. Juice is a treat in our house. :)

Breakfast, more choking...

On the way to surgery...

I was still in denial over the whole thing actually taking place. I think it is because I've waited 3 years this way. My mom had the girls, they had to perform on stage while I was under the knife! They are so brave. On the way we had stopped for dinner. Also had to past through a mountain area where it was snowing and traffic was bad. The girls and I emailed each other a million times while I prepped in the hotel room the night before. I was scared. I just didn't want to deal with pain anymore.

A new door has opened

I had my appointment with my neurosurgeon on the 16th, which just so happened to be my oldest daughter's 13th birthday. I was looking forward to it but held back my emotions, I didn't want to be let down. I have been waiting so long for my surgery and so long to feel myself again. I walked in this time with my entire family, we took over the small waiting room. I was in a fair amount of pain from the ride there but in overall good spirits. It just seems more like it will finally happen when you are sitting in the doctors office. He called me in and my entire family walked in behind me, the very people, besides me, that this effects the most. I'm sure an impact on the doctor. We sat there and listened to the same words we heard this time last year... Disc impingement, protruding, spur, broken neck, MRI, CT, c5 c6, car accident, not better. He said just 5 years ago this would have been done for me in three months time.

He let me know how he was going to fix me, graph my hipbone to place in the area for fusion. He told me the risks, paralyzed in extremities, infection, vocal cord damage, etc etc. He also let me know I'll have a small scar on the front of my neck, which I don't care about.

He said my surgery should be soon, within three months and sent me on my way. Although happy that the surgery date was closer I left disappointed that I was still waiting. I went back to surgery not being real in my mind and feeling kind of depressed about it all.

The next day I got up feeling as I always do, lots of pain, popping pain meds and sitting on the couch until the meds kick in, when we got a phone call. The secretary from the dr's office called to let me know there was an opening March 1st!! I was stunned all over again. First I panicked because it's the middle of my daughter's performing arts dances but knew I had to take it, I'd probably be waiting a long time more if I didn't. I also realized there is a greater power out there looking after me, March 1st is my late grandma's birthday!
I think this blog will end up being about recovery  now! :)