Thursday, February 4, 2010

IT AINT EASY!

Well it’s been three weeks since my last blog but unfortunately things have not settled and my condition continues to worsen. The decline is on a very slow scale but I definitely notice it. Others would probably not see this but they can only look from the outside and can’t feel what is going on inside. After monitoring what has been happening recently, I have reluctantly made the call to the MS clinic to get the prednisone prescription. I am still not confident that the steroids will be effective but it’s time to try something. Obviously, people can’t see what is happening to my eyes but they have gotten worse. The odd thing is that they don’t stay bad and can recover somewhat with rest. As I’m writing this my eyes feel pretty good and there is limited blur but the question is how long before that changes. The pain and vision problems increase exponentially by the end of the day causing particular difficulty in the dark. When I’m feeling worn out or my eyes are tired it’s difficult to read and in some cases not possible at all. For example, I was cooking dinner last week and trying to read the label from a jar and could not focus clearly enough to make out anything. Granted the print was relatively small but everything was just a blur, even when I tried with just my right eye. By the next morning it was better, still not good but improved. When my vision becomes blurred, it makes walking harder because I actually become dizzy. This is weird because I did not expect this outcome from hazy eyesight but it ties in with additional challenges, most notably my legs.

I have slowed up considerably and at times become quite unstable. This is likely not obvious to other people but it’s a big deal to me. I am always very slow when hobbling around with my cane so a further slowdown might not be noticeable but every movement I make is becoming more difficult. For starters, my balance has really deteriorated so I have to be careful where I stand and walk. I don’t hang around the top of a staircase or walk confidently through a liquor store. The chance of losing my balance and falling into a shelf stocked with wine and taking the whole thing down is a frightening possibility! I often lose my balance at home and have to fall back into a chair or rely on a wall to keep me up but in public, I have to be more careful. I liken it to a toddler learning to walk, there is a sense of uncertainty with each step and he’s not really sure if his leg will buckle with his next stride. My legs are weaker and just won’t move as easily as they did even one month ago which means it requires additional effort to do anything so I tire and get fatigued quicker. My feet usually drag across the floor because I cannot bend my knees to pick them up without a concentrated effort and I am feeling more spasticity in my legs. Given these circumstances, it is much harder for me to do most things although I’m sure no one else realizes this.

These are just some specific examples of functional decline that I’ve been faced with but there are so many more issues that I must deal with every day. I have always had bladder problems but bowel movements have become extremely troublesome. My lack of energy is increasingly noticeable and requires more personal motivation and drive in order to get out there and get things done. It’s very easy to become lazy when you feel dead all the time. For instance, I had a Tupperware container to return to my neighbour that sat in my laundry room for three weeks because I just did not have the energy or will to walk next door. I actually avoid having to walk every chance I can, I’m the king of drive thru service. From fast food restaurants and of course Tim’s to banking, oil changes and the carwash, if I can’t roll down my window and do it from my driver’s seat then I just don’t feel like doing it. Unfortunately there is not always an easy way out of things that must be done like taking my son to hockey or my daughter to gymnastics. Not that I want to get out of these tasks because I truly cherish the involvement I play in my children’s lives but sometimes it’s just hard.

I’ve been thinking about trying the steroids for a few days now but finally made the decision last night. I took Dylan to hockey practice last night and for the first time in the five years he’s played; I stayed in the concession foyer to watch through the glass. I was feeling beat and even though I was on my scooter, I didn’t feel like getting off in order to climb onto and navigate my way through the bleachers, it just seemed like too big an effort. At that point, I realized the negative impact this attack was having on me and that I needed to do what I can to provide some relief. I can almost guarantee that anyone who knows me had no idea how poorly I was feeling and I purposely try to hide any difficulties I’m having to the rest of the world, even those closest to me. I have always been this way because I do not want to talk about or display any negative feelings and I don’t want to complain or have anyone feeling sorry for me. I’ll deal with the psychoanalysis later but this strategy has backfired on me in the past.

I suppose it leads to isolation and loneliness but I’ve been dealing with my problems alone for so long that it’s all I know. Sometimes I do let it get to me but after all, I’m only human and perhaps not as strong as I’d like to believe. It is hard to be alone when you’re not feeling well, it would be nice to lie down with a sympathetic and compassionate ear, enjoy some hugs and feel loved. But alas I do not have this and it’s easy to fall into the woe is me mindset. I cannot dwell on this fact because it would just lead to depression and there is nothing I can do about it right now. Well I do get the love and hugs from my children but it’s not the same so it still feels like there is something or someone missing. Fortunately, I have God to fall back on and lift me out of self-pity. He is the one constant in my life, I know He loves me and will never leave me. He does not change; He is the same yesterday, today and forever. We have been going through the book of James in church and it has been a real encouragement. The initial message is that we will all face trials and tribulation but we are to count it all as joy. Sounds easier said than done right?

After hearing the disappointing news at my last appointment, I could have been overcome with sorrow and discouragement but I wasn’t at all because I had faith to lift me above that. Now that I’m feeling this attack progress, it becomes more difficult to stay positive but there is no other alternative for me. I could become angry, discouraged and depressed but I know that will only make things worse. I do not know if I’m on a path to further progression and disabilities but I won’t let that possible outcome beat me down; that is the power of faith. I believe that everything is in the Lord’s hands and trust in his plan for me. When we are faced with challenges and “bad stuff” we can’t let it consume us, find the joy in it. I am still confident that I’ll find relief from this terrible disease and thankful that I have so many blessings. I could be completely debilitated and stuck in a wheelchair for the rest of my life like many people are, but I’m still mobile and independent. I can still drive and enjoy many aspects of life that might not be possible if I was stuck in a long-term care facility. Everyone has their own story, some more difficult than others but we must remember that things can always be worse so be happy and thankful for what you have today.

It is so important for me to remain active and enjoy life. I stay involved in many social activities like church, interactions and friendships that are built with other hockey parents, I take ski lessons every Friday evening and try to meet up with friends at least once a week. Sometimes I just don’t feel the energy to take part in some activities but I force myself. I have to take joy in what I can today because I might not be able to do it tomorrow! For example, I was very worried that I wouldn’t be able to ski because my balance has been so poor but I had to try. Since I use a sit-ski, I’m not on my feet but I have my butt strapped into a bucket seat and fortunately my balance isn’t affected while in a sitting position. I’m happy to report that I’m doing quite well; I hope to get off the bunny hill and up the mountain this week. I have most of the fundamentals mastered, now it’s just practice.

So what’s next for my treatment options? Well assuming everything is still cool with the MS clinic, I’ll start on prednisone before the end of the week. Since it is unusual for me to have an attack, I am hopeful that it will be followed up by remission and that the problems I’m having will be temporary rather than a sustained progression in the disease but only time will tell. I am still extremely eager to be tested for CCSVI but have recently been informed by two private diagnostic centers that they are not doing any testing and there is nothing planned for the immediate future. It is now so important to get the study results from Buffalo; if they come in positive, I’m confident that testing will become a lot more accessible. I have also contacted the False Creek clinic and they can now do the MRV testing using the proper protocol but they won’t have the Doppler ultrasound procedure in place until sometime in March. There is not as of yet any plans for treatment but I’m hopeful that it won’t be too far off.

There remains a ton of scepticism among most of the medical establishment but there are some bright spots coming forward from open-minded doctors. I have been informed that there is one local doctor moving forward with testing and has found blocked veins in all MS patients he’s tested. Apparently, he has the personal financial ability to proceed with investigating CCSVI without waiting for funding decisions from the MS Society or similar organizations. When I learn more about this doctor, I will post the information on my blog. I’m also investigating the possibility of a foreign clinic being established that will do the testing and the Liberation procedure. It’s too preliminary to get into any details now but plans should come together within the next couple of months. I still think that it will likely take years for testing and treatment options to become available in Canada but us MS’ers must maintain the pressure on doctors, government, MS societies and clinics. Our hope is still strong and positive developments will occur if we remain vigilant and determined.

The problem remains with patience. For those of us suffering the devastating and disabling consequences of this disease, time is of the essence! Irreversible damage is occurring every day and many of us simply don’t have the time to sit back and wait for clinical trial results and further studies. I know that for me the urgency has increased significantly since learning of my recent progression and new disease activity. I know how fast things can develop with MS and as the inevitable downward spiral continues, my desperation grows. I don’t know how everything will end up but my time horizon to be tested and correct the blockages that I know they’ll find is within six months. Most people might think this to be too optimistic but I’m determined to push forward and take control of my own health. There is no way I am going to wait for the Canadian medical system to provide any hope or relief for me; I’ll search for and find it myself! I live a very difficult existence that most people can’t recognize or appreciate but I remain committed to living with a positive attitude. As I say every night and to end this blog...Praise God!
LC

2 comments:

RR said...

You are an inspiration to all, especially those of us with the privilege to be able to call you their friend

Loobie said...

Lee,
When I read your blog it really hits home. You and I are the kings of trying to fend off the demons at the pass. I have sent you a message on Facebook. Hit me back and I have some more specifics about performing the CCSVI procedure for you.

Lew