Friday, January 13, 2012

TIME FLIES

Wow four months goes by fast, that’s how long it’s been since I posted a blog! I actually meant to get one in before the end of 2011 but now that year is in the history books so…2012 here I come! I wish that had some kind of connotation that I was going to bolt out of the gate running at top speed but unfortunately that is not going to happen. On the contrary, I have slowed even further which is a disappointing way to start the New Year but none the less I do have many positive feelings for the coming year. For starters, I will be getting married in June which is a very encouraging and joyful experience. I must maintain my focus on the positives in my life otherwise I’m left to dwell on the negatives of which there are many. If I were to let myself become consumed with the pessimistic consequences of some of my health problems, I could easily fall into a discouraging downward spiral of depression. This outcome would suck even more than the actual health issues that I’m forced to deal with.

I left off my last blog describing the painful experience related to having a bladder stone and the associated discomfort that accompanies this problem. It was at the end of August that I was awaiting my urologist appointment to find out when and how I was going to get some relief. Well the relief I was anticipating would not come until I could get in for surgery to remove the bladder stone and the earliest opening for surgery wasn’t until September 9th, another two weeks of misery! I told my urologist that there was no way I could handle the pain and distress of leaving the catheter in for that much longer and insisted that it must be removed. The outcome of removing the catheter was unknown but there was no other alternative in my mind. If I was still unable to urinate then I could find myself back to square one so if it was coming out I would have to be prepared to self catheterize. A very eerie and unpleasant thought but nothing compared to the crap I had gone through the previous couple of weeks. The day after my urologist appointment I was booked to be taught the self catheterization procedure and as uncomfortable as this was, I found great relief in knowing that I now had the ability to alleviate my pain on my own when necessary. After the catheter was finally gone my bladder function had returned somewhat and I could urinate on my own but problems remained and I did have to self catheterize at least once a day. I finally had surgery to remove the stone on September 9th and things returned to a somewhat normal, albeit dysfunctional state. I didn’t feel the need to catheterize on a regular basis so I stopped but not for long. Within two months I began to see a type of sediment and strands of some form of mucus in my urine…problem not solved!!! On November 21st I was back to my urologist and was booked for another procedure on November 29th. This time only required a local anesthetic so the doctor could use a scope to look inside my bladder to see what was happening and sure enough there were plenty of mucus membranes floating around. The doctor sucked everything out but I still didn’t have any answers as to why this was happening. The best explanation was that if I wasn’t completely able to empty my bladder then particulate matter would form similar to letting a glass of sea water evaporate allowing salt to crystallize and form solid particles. My doctors solution to prevent this was to self catheterize on a regular basis so unfortunately this has become a regular routine. It really sucks but like most things, after a while it becomes second nature and not a huge deal. The discouraging part is that now well over a month later the sediment and particles are still there so I’m not sure that catheterizing is all that effective. I’m going to my family doctor next week to get further tests done; perhaps there is still a bladder infection that just won’t go away. I don’t know what is going on but I need to look for answers!

In addition to my bladder issues, I have experienced a worsening of some symptoms. My mobility issues continue to get worse; the spasticity in my legs has increased causing more difficulty with walking. Same old issues but I’m just having more problems moving my legs, picking up my feet and the speed at which I move is slower and more pronounced than ever. My balance never did recover to the point that I feel confidant and secure in certain situations or movements. I decided not to register for skiing this year because I know I don’t have the balance to maneuver a mono ski and I wasn’t very interested in any of the other options. This fact really does hurt because skiing was something that I enjoyed immensely however I’ll never give up and perhaps by next year things will change. You just never know so I won’t give up hope no matter how unlikely the prospect of significant improvement seems to be. The results of my last MRI showed no new lesions or obvious MS activity which is a positive yet I still feel progression in terms of my physical abilities. This hasn’t stopped me from continuing an active lifestyle. I still go to the gym and have recently been working with a trainer. It’s been really good because he pushes me to have a really good workout, same old mantra: use it or lose it! It’s nice to be able to freely work my upper body again, after 4 physical therapy sessions my sore shoulder and arm were finally on the road to recovery. I still try to accomplish certain tasks that I was once so proficient at but now seem hopelessly useless. For example I’ve been building some walls to create two new bedrooms in our basement. A seemingly simple job but not for me, not anymore that is. It’s so frustrating to not be able to accomplish things without help or to take ten times longer than what I would normally expect. On occasion I allow this to get under my skin creating a very negative impact on my emotional state. I’m only human and sometimes get overpowered by the frustration and disappointment of my lost ability to do certain things. I have caught myself in the “walking envy” state lately. This is where I’m watching someone do something as simple as strolling down the sidewalk, even if they use a cane, I can’t help but feel envious wishing I could move that well. I hit that wall one day after working in the basement and reflecting upon all that I have lost. It caused a temporary emotional breakdown of sorts, it happens very seldom but a good cry can be therapeutic. I don’t stay down long but it is a little refreshing to not play superman all the time. When I come back to reality it is encouraging to look at what I can still accomplish. I love tools and building or fixing things and I can still do a lot. The knowledge is still with me and even though I might need physical help I can still accomplish lots, in some cases more than many able bodied people. I got a garburator for Christmas and did the installation myself. Not a huge feat but one that a lot of people would never attempt let alone complete successfully.

2011 had some very positive aspects, as I’ve mentioned I now own a home again and have my children living with me 50% of the time. It’s wonderful to play a more active role in their lives although it does come with additional challenges. It is far more tiring than I thought, getting up early to get the kids out of bed and ready for school, making breakfast and lunches and sometimes just the nonstop action of two young ones constantly running around is extremely trying. I’m thrilled to have my children back but it’s a lot for a disabled parent to handle at times. I just have to remember my limitations, take a nap when I get some down time in the afternoon and not feel like I have to be able to do it all on my own. I just have to continue to take things one day at a time.

I’m not sure what 2012 will have in store for me health wise but having described the gradual progression that I have experienced, my self advocacy is kicking in again. Apparently there is a study taking place for a secondary progressive treatment but like always that’s not on a time horizon that is likely to benefit me. There is still much controversy over CCSVI and pros and cons for both sides. Research is moving forward at a good pace but the benefits of treatment are still all over the map. Premier Wall of Saskatchewan has recently announced that his government has allocated $2.2 million for 86 multiple sclerosis patients to participate in Phase II clinical trials into CCSVI, currently underway in Albany, NY. I believe that we are still a long way from coming to any definitive conclusions on CCSVI but it still holds great promise. In the meantime, I still can’t sit back waiting for something or someone to knock at my door with the promise of any significant help. I’ve decided to begin research into stem cell therapy again. There has been much advancement since 2008 when I went to China for treatment but no concrete successes. Stem cell treatment is now all over the internet and offered in many places around the world but caution is a must. Many programs have proven to be fraudulent so diligent research is required. Until I can fully immerse my head into the research again, I won’t make any claims or plans but it is time for me to search for my own help again. I’m not sure where this will lead me but as I said, I can’t just sit back and wait while my body and mobility continue to decline. My hope still rests in the saving grace of God but that doesn’t mean that I can just sit idle waiting for a miracle. I do plan on getting back to writing more so you should see my blog posts more frequent than during the last year.

Until next time…

LC

4 comments:

Loobie said...

Lew,

Lew here. I think you should maybe try some LDN. I'm secondary progressive too and I have been taking it since the CCSVI treatment. I don't 'show' any activity on my MRI either, but that is simply not a marker of progression or disability once you are progressive. Aside from some slight weakening in my left leg, that is totally manageable, I've really not progressed since on the LDN. And to be truthful, that is so slow that I'm not sure it's par for the course with the CNS damage I have. It's cheap as hell and really doesn't have any side effects so what have you got to lose?

Stay well brother and I'll see you around!

Lew

Loobie said...

Oops! I mean Lee!

ipf said...

i thought your blog was cool and i think you may like this cool Website.
Best CCSVI Mexico

Kit Minden said...

When I posted about your experisence to friends on FB in private groups, I got a PM from someone using someone else's name (hacked account?) saying how you had such a great experience in India. It's bizarre!