Quite possibly one of the most emasculating and embarassing things about having MS for me is the loss of bladder control. I have almost all of the urinary problems people describe: frequency, urgency, incomplete emptying, dribbling, inability to go, starting and stopping, no bladder pressure, and of course, loss of nocturnal control, aka bedwetting. Perhaps one of the most motivating things about having had a CCSVI procedure (and the subsequent vein reconstruction) are the little victories that seem to come along every now and again.
I've never really posted about one of my MS problems because I assume most MS people know of this to be an issue and also because a 45 (now 46) year old man shouldn't be dealing with the inability to wake up before peeing in the bed at night. But I do. For about 3-4 years now, somewhere in there anyway, I started having to go to bed with a diaper. I could beat around the bush and call it an adult undergarment, but let's call a spade a spade - I've been sleeping with diapers to try and keep my wife from divorcing me over having to wash the sheets every day. I was treating my bed like a dog treats a fire hydrant almost nightly. First few times it happened was a shock followed by some intense anger, disbelief, and worry. It's hard to feel sexy and wanted waking up in the middle of the night in a puddle the size of a bathtub, fetching a giant beach towel to mop some of it up as I lay awake wondering why my life has gone this way. It's emasculating as anything I can imagine.
The good news is, since my vein reconstruction on August 12th, I seem to have this one beat. No incidents for a good 3 months now so I decided to go out on a limb and write about it. I'm back to sleeping in my normal bedroom garb (I'll try to keep that vague for decorum purposes - no need to ruin anyone's appetite), and I wake up one or two times a night to get some relief, then wake up in the morning without foul or foam. Kind of a nice feeling, actually. A far cry from waking up every hour - 6-8 times a night - in soaking wet sheets and spending day after day exhausted. It just wasn't a great day when I finally went to Walmart to pick up the product......
Anyway, not to belabor the point in a weird subject, I see this as another little sign that perhaps I'm moving toward the right direction in terms of my overall progress. Remember, my goal is to say I HAD MS, not have it, and things like this help me in my pursuit. Perhaps writing about it will help keep someone motivated to do what's necessary to keep the jugular veins open and circulating well.
10/31/11 Getting Better, but.....?
Big Bear Lake in Southern California hosts one of the great Oktoberfests every year, and this past weekend was time for us to get together with our friends from San Luis Obispo and enjoy the annual pagan ritual. Last year was a real bummer for me. I felt so alone in a sea of people dancing, partying, drinking and generally enjoying themselves while I stood outside, heart out of rhythm, legs the worst they've ever been, and generally not enjoying myself.
What a difference from a year ago. Last year we went to Big Bear a couple of weeks before my first CCSVI and I was miserable as I felt my legs slowly drifting into the black hole, but shortly afterward I began to feel some real hope as a result of that procedure. I had about 6-8 weeks of relief from the first CCSVI, and it became the beginning of this one year (to date) journey of the open vein. Come January, my left jugular had clotted and my symptoms began to return, and thus 2011 became a year of trying to get the clotting under control. 9 procedures including a vein reconstruction later, my progress is beginning to feel like I'm heading in the right direction again.
But it's not without its challenges. As part of our Big Bear ritual, we bring the motorcycles and ride the hundreds of miles of fire roads and other trails around the area. It's downright beautiful around Big Bear. 6-7000 feet, above the smog of LA, seldom rains, and smells like pine about everywhere you go. Saturday we rode about 50 miles, and Sunday we got about 55 in. On Sunday, we were running a little late, so we tried to find a shortcut over the mountain. After a reasonably good climb on nice terrain, it suddenly got rocky and narrow, with ruts and potholes everywhere.
I can't stand up on the bike for any length of time, and I also can't really stand in the athletic position required to navigate the slop. I thus have to sit and try to make my way up the rocky hillside as best I can and my eyes jiggle as it becomes more and more difficult to keep the momentum. Obviously, this is where most of my low speed falls take place, and my riding partners have to come and rescue me.
I made it up a fair distance, then lost control and slid down into a big rut, then got the bike stuck. I didn't fall, but I was hopelessly stuck on some boulders down in a giant rut the height of the bike. My buddy came back to find me and he got the bike out as I took every piece of energy I had to try and crawl out of the rut. A normal person would just climb out and walk up with the bike, but with all the progress I've made, this situation is definitely where the intense weakness and loss of motor strength shows up.
Strangely, this time I wasn't so mad about it. I usually get quite upset when I can't walk out of somewhere, but on this day, I just crawled out of the hole, got back onto the bike and did my best to navigate down the hill back to the better terrain.
We got home late last night and I popped up this morning to go swimming. So I guess it's fair to say I am getting better, but........I still have a ways to go before I'd call this fixed.
Sure had a nice time though.
What a difference from a year ago. Last year we went to Big Bear a couple of weeks before my first CCSVI and I was miserable as I felt my legs slowly drifting into the black hole, but shortly afterward I began to feel some real hope as a result of that procedure. I had about 6-8 weeks of relief from the first CCSVI, and it became the beginning of this one year (to date) journey of the open vein. Come January, my left jugular had clotted and my symptoms began to return, and thus 2011 became a year of trying to get the clotting under control. 9 procedures including a vein reconstruction later, my progress is beginning to feel like I'm heading in the right direction again.
But it's not without its challenges. As part of our Big Bear ritual, we bring the motorcycles and ride the hundreds of miles of fire roads and other trails around the area. It's downright beautiful around Big Bear. 6-7000 feet, above the smog of LA, seldom rains, and smells like pine about everywhere you go. Saturday we rode about 50 miles, and Sunday we got about 55 in. On Sunday, we were running a little late, so we tried to find a shortcut over the mountain. After a reasonably good climb on nice terrain, it suddenly got rocky and narrow, with ruts and potholes everywhere.
I can't stand up on the bike for any length of time, and I also can't really stand in the athletic position required to navigate the slop. I thus have to sit and try to make my way up the rocky hillside as best I can and my eyes jiggle as it becomes more and more difficult to keep the momentum. Obviously, this is where most of my low speed falls take place, and my riding partners have to come and rescue me.
I made it up a fair distance, then lost control and slid down into a big rut, then got the bike stuck. I didn't fall, but I was hopelessly stuck on some boulders down in a giant rut the height of the bike. My buddy came back to find me and he got the bike out as I took every piece of energy I had to try and crawl out of the rut. A normal person would just climb out and walk up with the bike, but with all the progress I've made, this situation is definitely where the intense weakness and loss of motor strength shows up.
Strangely, this time I wasn't so mad about it. I usually get quite upset when I can't walk out of somewhere, but on this day, I just crawled out of the hole, got back onto the bike and did my best to navigate down the hill back to the better terrain.
We got home late last night and I popped up this morning to go swimming. So I guess it's fair to say I am getting better, but........I still have a ways to go before I'd call this fixed.
Sure had a nice time though.
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