Friday, January 8, 2010

2010

It's a new year and I'm feeling pretty philosophical which means I need to write. I think I'm just a bit war weary as it were. No I don't mean to compare my situation to our men and women in the military. I'm talking about the personal, internal war that all of us wage every day that have incurable shit. It's a struggle between normal life and the life we now must begrudgingly lead. The life we want back vs. the life we now have. The happy life I had vs. the daily grind it has now become. Things that torment me are things like "how do I keep my chin up?", "How do I find joy in the things that have always given me pleasure?", "Are the things I love even possible to engage in anymore, and how the hell do I fill the void that is there that used to be taken up with those things?". "How can I be happy just 'being there'?, not engaging in life on a physical level?, not pouring energy into things anymore as that is how they were gaged in terms of how much they meant to me?"

The answer to those questions I'm now finding out is now what is called LIFE. I'm not in control of it anymore. Was I ever really or was that just a facade? So the struggle to find those things that make you feel at peace and relaxed and OK with the world are really just the life that I now have (and frankly so does everybody). I imagine it always was, but I didn't perceive it that way as I felt I was in control of anything I wanted to do. It just involved an active decision to decide to put the energy into it. I think that is the rub. The juice just is not there to do those things anymore. So now how do I turn off all those 'drivers' that were the markers of my being happy and content? It took me a lifetime (what I've lived so far) to develop those desires, tastes and preferences. So I have to re-write them now?, but the catch is it now only involves those things that can be done from the seated position. Those things that can be done within a hampered ability to walks' distance from a bathroom. Those things that don't involve too much energy lest I get dizzy and disoriented and unable to focus on what I was about to put the energy in to. Are you fucking kidding me? How am I supposed to do that? I'm not equipped to do that. And all the books out there on the subject are filled with all kinds of stuff. But most of them are written by people who can choose to pour 100% of their energy into their wellness; IE, they usually have means. I could be so lucky. I still have to work and be a Dad and be a husband. So what happens is the best laid plans of mice and men get shoved down as doing those three things doesn't leave a lot of time to eat how I want. To rest how I want. To do things other than just what it takes to get through a day without falling (literally and figuratively). It makes you sour when you get all fired up do start doing THIS or THAT because you know it would result in a better outcome in terms of overall well being.

But then you only have the energy and time to just get by each day without doing any of the great things you know you should be doing. How do I come home and cook a really nutritious meal to help my new dietary goals when I can't stand in the kitchen for that long after work? How do I learn how to cook it to make it palatable when I've spent my whole life learning other things like how to run a plant and how to be the sole breadwinner in the family? I could do it after some substantial rest, but what do I do about not being able to drink fluids after 8:00 at night lest I piss the bed, or at the very least, have to get up multiple times to pee? How can I be a role model for my daughter when all I can do is come home and plop after getting some takeout? I want her to be talking about how proud she is of me for "doing it all, even though he didn't have the get up and go", like you see other kids who have handicapped parents when they express how it gave them such good lessons. Maybe me just being able to do what I CAN do is enough. Maybe she already sees me just going to work every day and trying to participate in her life as that.

I don't know but I know these are the things that I have been thinking about when pondering how it is I'm going to approach 2010 and not give in to the fear. Every year it gets harder and harder because every year you have less and less energy to deal with it. Of course that's also true as we age, this is just that at an accelerated pace. And I DO feel fairly stable since I've had the procedure. I've been dealing with some sciatic nerve stuff that has scared me because us MS'er think of any ache, pain, or tingle as MS. This is not, but it is a nerve based issue and it's really been a distraction, but I'm on getting it fixed if possible, so that's nice; a physical malady that can potentially go away, wouldn't that be something? Also this winter has got me down a bit as well. I don't think I've seen the sun for well over two weeks and it's been cold as shit. I stiffen up in the cold and don't want to do anything. That's not an option however, as I atrophy when I sit around too much. So yes, I'm bitching like crazy in this post, but just because I'm still damaged from 8 years of MS and I'm tired. It's every minute of every day. And it's my job to figure out how to stay positive so I can keep it up for another year and keep a smile on my face. That is the goal. Just like it was before MS. Constantly searching for peace of mind. It's just harder now, but I suppose it can be done. It just REALLY sucks sometimes when you want to do what you can't, like go up the stairs on a run, or skip, or get down on the floor and not need 5 minutes to get off of it. But those are things I know are potentially gone. So why is it so hard to accept that this is just how it is? I suppose it's because we watch everyone else just do those things without thinking of them.

So while I'm lamenting the past this morning, I also know that it needs to be over after I hit "publish" since reality is, after all, reality. So I am doing better than I was. I'll say it again: "at no time during the course of this disease could I say that the last six months were better than the previous six, I can say that right now". I'm glad as hell that I had this done. Has it been without issue and did it meet my expectations? Hell no. But all I do know is that I'm glad I pulled the trigger when I did because allot of the doors I went through are shut right now. Are they going to perfect this and have it be way better than it was with me? Most assuredly and sometimes I wished I'd have waited due to the shoulder and neck issues I now deal with. But like I have always said, since I'm SP, whatever function I'd have lost while waiting, I might not get back so I am glad I did it. I need to be frank and earnest though (in Detroit I'm Frank and in Vegas I'm Earnest). I still have the damage that this disease has done to me and that's for sure. The only things I can factually say are this: 1) I haven't used my cane since the second procedure and that's huge 2) I haven't kept sliding downhill and that's also huge 3)I have plenty of "little things" like not being dizzy so often and not having my eyes go out so much.

So why the bitchin'? I think it's because I still have so many things that are still so affected. I don't use my cane anymore, but I'm still not able to walk very far. Maybe part of me is using the old medical mindset. I underwent a treatment. Normal 'treatments' make the ailment go away. This has not gone away; it's still there. But it has lessened in intensity and is not getting worse. So I should be fully satisfied with that right? I am to a point, but it's just human nature I think to want a medical procedure to 'fix' you. You want it to make the bad things quit happening/go away/ reverse, whatever. So yes I'm very pleased that it's done what it has. I'd do it again tomorrow. But to say I'm overjoyed that I still have to live a life of regimen to my routine, still not do many of the things that gave me such joy for so long; I just can't do it. MS sucks and maybe I cheated it a little bit. But it is an insidious disease and, even doing what I did still leaves me wanting for things to work better. I"m so close to being able to exert myself enough to sweat, but I'm just not quite there. Maybe in my mind I think 'if I could just get to that point, I'd be more satisfied', but I really don't know for sure. Maybe it would, maybe it wouldn't. I use that as a marker though because I know how much better almost everything worked when I was still MS'y but could still gut out a cardio workout. EVERYTHING worked better because of the core strength and all the movement. Maybe that's it. If I could just get back the ability to move more. Isn't that really what it's always been? It is after all considered a 'movement disorder'.

So I must admit to not loving the fact that this didn't reset me to the place where I was still dealing with MS, but I was still functioning at a pretty high level and was still capable of keeping myself pretty strong. It hasn't done that. It's taken me to a point where it's better than six months ago. That's a plus, but I must admit to really hoping that it would make it so I could live more 'spontaneous life' and do things like go to ball games and stuff like that. So I hope I don't offend anyone who is more disabled than me reading this who is like "shit, I'd take what he's talking about!". I would, and am, too. I just wish it had shaken the ground more for me to this point. I'd simply be lying if I said any different. All things are relative to your own situation. What doesn't shake the ground for me could be someone else's earthquake. That's why there's that old saying "one man's trash is another man's treasure". So since I AM still ambulatory, I wanted it to make me more so. Since I can still bathroom by myself, I wanted it to make it easier and less insistent. Since I still am not throwing up from my vertigo, I wanted it to just go away. It seems it has really quieted down my disease process and that is a home run in and of itself. Now c'mon stem cells, or something else (or even advances in this where they can 'tweek' something or do something they didn't know when they were in the first time) that will make this a grand slam.

I guess I'm just a human being and my real hope was to feel 'back to normal'. Don't know that that's even on the table really, but as long as I strive for that goal, maybe I'll always inch a little closer even though I many never achieve it; but I plan to commit 2010 to making sure I still don't leave any money on the table. I'm all in and whatever comes around, I need to stay in front of and not let pass me by. I managed to hop on this merry go round, so I need to make sure I keep my eyes open for what's next. Happy New Year to all and I wish a great CCSVI breakthrough year for all of us.

10 comments:

  1. Thank you, Loobie for your realistic response to after-stent life with MS. Those of us who do not have a CCSVI diagnosis yet (normal doppler of internal jugulars and seeking Transcranial Doppler at own expense) appreciate hearing both the positive and negative aspects of your recovery. As another heavily cold-affected person, my fatigue, which disabled me from working at age 50, seems to make it impossible for me to accomplish things in the winter in GA, no less. Thankfully, I can walk fine, so far, but I can't consider moving to Alaska to be closer to my four granddaughters and daughter who are stationed there.
    I look forward to hearing more about your recovery and wish you a happy 2010.

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  2. Hi Loobie, you write a good blog - and your comment that you're just a guy who wants to get better touches a cord with me. I googled "MS" and "recovery" and saw your site. I hope that what I've written on mine might also be useful to you. Incidentally I had been unable for a year to get thru the night without having a leak, and I no longer have that problem .. so something's working (for me). I've got a 12yo daughter, and feel what you say about being unable to interact or play like someone without MS - but i've also got a theory that we're probably raising better future citizens than most people, as our kids will be attuned to, and kinder towards, those less-abled. Best wishes, KB

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  3. Hi
    This is the first time I've read your blog and I must say I found it very interesting, honest and well written.
    As an Mser myself who is hoping to have the liberation treatment, this provides a very realistic perspective on what can be expected from this treatment.
    Good luck to you, happy new year, and keep blogging - all the best, S

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  4. Thank you for maintaining this blog friend. I was dxed last year, at age 33 and have had a rather large dose of chemo wich i strongly want not to repeat. CCSVI is my new hope (as for all msers i suspect) but it s too difficult to get tested for it in Greece. Poland is scheduling for 2011 and i dont think i can wait so long only too find out if i have blocked veins or not. All in all, i am glad you feel that MS progression halted, this is most important and i wish you recovery in the long term. Give yourself some time. After 8 years with ms it s only natural some things to not just fade away. But in time they might. At least i hope so. Take care.

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  5. I just got on to check your progress as I try to do every week. I really wish that you had better news, this has got to be an extremely difficult process. When I woke up and my knee was hurting I was like, "Damn, getting older is a real pain", but after reading your blog I feel like a real ass. I pray every day that you will get better. Take care my friend, and remember I love you and your family more then I can say.

    Cindi

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  6. Hi Lobbie,
    I am very happy for you and wish you all the best. I am looking for a treatment for my wife as well (she is an early case and was diagnosed only last year). However, I prefer to find her a solution as early as possible.

    How much does it cost in US and what are the potential sources to cover the treatment?

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  7. Hi Lobbie,

    Just read through your blog after finding it on Google, I was searching CCSVI as I have only just heard of it. I have suffered from MS for 10 years and like all of us have been waiting for a breakthrough, I have been on Beta Interferon for 7 years but my disease has progressed all the same. I have family history and was my Mothers carer after my Father died when I was 18. I am glad to hear that your disease seems to have stopped progressing since the proceedure, allthough you have not had the recovery you had hoped for.
    I think that we are all hoping for a miracle cure, this is still a good step forward and I hope I can find out how to get it. I would be quite happy if I could halt my MS where it is now, even though I struggle to do most things now I am still independant. If this can be used to stop progression when people are first diagnosed, it would mean that from now on people would not have to become severely disabled. I wish this for the sake of my children, just in case they follow my family history.
    Keep up the blog it is very well written and honest, I will continue to keep an eye on it. I hope you continue to get a few things back over the following months / years, keep up the good work and take care.

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  8. Thanks Lobbie for this extremely helpful blog. I too am disappointed that the MS just "didn't go away." If only! But as you said, getting rid of the cane is HUGE. Congratulations! Let your body recover --- after all, the blood didn't flow normally for 8 years --- so progress should continue as the body gets more irrigated.

    My husband is almost bed-bound now with PPMS, so yes, I'm following all this with immense interest. Thanks again for sharing!

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  9. Thank you Lobbie. You make me laugh, then cry. Your honesty is appreciated. A thousand thank you's!

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