Thursday, August 27, 2009

Another week goes bye bye

Well this week has had some interesting turns. I've still not noticed any massive uptick in my functioning, but I have still been noticing some small stuff improving. I also need to say that my legs are still pretty weak and get fatigued easily and that I'm still wanting that to not be so really badly! The improvements are still all in the head affected stuff. I'm thinking a little clearer, eyesight is recovering quicker and also dizziness is recovering quicker. The one thing I also found out this week is that my blood is too thin. A normal blood clotting number (Protime, or INR) is 1. The therapeutic level we are supposed to be at for the stents to incorporate into your veins is a 2. That simply means it takes twice as long for your blood to clot than it would normally. Well mine was at 2.9 today, which is too thin. Not a big deal until you cut yourself or start bleeding anywhere because it's so hard to stop. I think the drug used to do accomplish the thinning, coumadin, also can make you a little fatigued and just feeling a bit off. I'll be glad to get off of that shit.

So my shoulder still looks like someone put a couple of rocks under my skin and it's still partially out of socket, but it doesn't hurt as bad as it did last week. That's another thing that can mask how you are really feeling. Pain. Chronic pain is no fun at all. It's not like I was in any significant pain, hell my legs hurt worse during the day, but that it was just constant and has been accompanied by a headache that I can't shake. It just wears you out and I've already spoken to the dynamic we MS'rs create: once something bad shows up in your body, it stays, or you at least think it has a good chance to. So things like recovering from surgery, which would have seemed normal if I was healthy, take on a different feel since you just don't trust that pain and things of that nature are going to go away once they show up. It all kind of "blends together" and you have a difficult time discerning what is your MS and what is your recovery. It really is a weird dynamic. I mean we live with our MS every day and know what it feels like, but it does vary so much in terms of intensity and what not that you just get to "feeling bad" and call it that. You don't say, "well my MS stuff over here is like usual, but this little headache is totally separate". It just doesn't work that way. Once again, not feeling like I described that very well, but I'm not spending any more time on it! Did I mention that I can be windier than a bag of assholes? It's true, I like to write. It's cathartic for me and I always feel better when I'm done. Maybe I'll write a damn book. About what, I just don't know, but maybe someday. At any rate, I asked one of the Italian guys who has had this done for a while now if I could copy and paste one of his posts. He said yes and it is to follow. This guy was one of Dr. Zamboni's original patients and he's also a physician. Here is what he has had to say about treating MS with this procedure. He's posted two, so I'll probably put them both down. Here's his introductory post:


I am a 63 year old Italian consultant cardiac surgeon working full time in Belfast since 1993. I was diagnosed with chronic progressive MS in 1986. It started with spasticity and progressive weakness of the lower limbs, more marked on the right side. It affected my ability to walk and control of bladder and bowels became a problem, in addition to erectile disfunction. When I met prof. Zamboni two years ago I walked with a stick, 200 yards seemed an unsormountable distance, and fatigue and back pain were a real problem. I met his wonderful team, Erika a very skillful sonographer, Annamaria competent and lovely researcher in functional assessment, and Dr. Roberto Galeotti, a skillfull interventional radiologist. In brief, Ultrasounds showed obstruction of the venous drainage from the brain at the jugular veins level, this was confirmed at angiography showing 95% stenosis of the left jugular vein and an inverted valve in the right jugular vein. Dilatation of both sites with a balloon was carried out during the same session. I experienced an immediate benefit: I was taller, the strength in both lower limbs improved, and so did bladder and bowel control. I could stop using Viagra.
I read all the papers that Zamboni and his team have published so far and from the first one I believed that he had made the first real breakthrough in the understanding the etiology of MS.
Now I have notice a slight deterioration of my condition, although I am still a lot better than before having the procedure. A check-up with Zamboni a month ago showed that the flow in the left jugular vein is still ok but there is reflux in the left one: the plan is either a further dilatation or surgery. This shows a strict correlation between venous drainage from the brain and symptoms.
Zamboni invited me to take part in the press release during the international congress on CCSVI in Bologna in September: I look forward to sharing my experience with others. I am very proud to share with Zamboni the place of birth (I am from Ferrara) and I know that his idea will change the destiny of thousand of MS sufferers. I hope that the medical profession will hopen his eyes soon.


And here's his second one:


It is time for people to start thinking.
Let us review the situation of MS sufferers before the Zamboni's revolution.
Nobody knew the etiology of MS but everybody knew the inevitable outcome. Being diagnosed with MS meant a sentence to a painful and distressing death. Neurologists and allied professionals prescribed all sorts of different treatments for a condition they did not know the cause of. These different kinds of treatment, from shots of prednisolone, interferon injections, spinal antispastic drugs, to stem cell injection have significant, potentially dangerous side effects. In spite of this patients, desperate in their quest for delaying or avoiding the disastrous end result, subjected themselves to all of these potentially harmful treatments. I am not aware of any MS pressure groups asking for evidence: beggars could not be choosers.
Now, thanks to the genial intuition of one man, a plausible explanation of the causes of MS has been put forward and it has open the door to an effective treatment (which as a side point would save the health systems a lot of money).
The endovascular treatment of defective venous drainage from brain and spinal cord has no harmful side effects and has an insignificantly low mortality and morbidity (complications).
When I was on the table for my venogram I was praying God that Roberto Galeotti would find something wrong with my veins because I was not resigned that nothing could be done for me. I nearly cried when I saw on the screen the stenosis in my jugular veins.
I believed that I had nothing to lose when I decided to have the procedure: at the worst I would not have benefited from it. Fortunately I did.
As I said before I refused any offer of treatment before since diagnosis: I could not accept the concept of treating with potentially harmful means a condition with totally unknown etiology.
Now many MS sufferers want undisputable proof that Zamboni is right before embracing a possibility of an effective treatment with no harmful side effects.
Beggars have become choosers.


Stories like this are what keeps me hopeful. He described my three "biggies", legs, bladder and bowels, and I really hope I see these results. It's hard at times being one of the handful of us that aren't swinging from the rafters, but nevertheless seeing and feeling like there's no progression going on. I had a few crap days this past week and got very discouraged. Then the last two days I had some increased ability to work a bit more and walk a bit further. I just don't know yet guys. I told myself after my last attempt at something unproven that I would never again go the route of only doing something based on what someone had to say. This, however, is different. There are papers written and actual procedures done. And I just can't wait until September 8th. The woman who introduced this to me is actually going to Italy to be at the conference when the results of Zamboni's last two years are rolled out. She's a great writer and I can't wait until she gets back with news. My pessimism about my own personal results is most definitely a coping mechanism designed to protect me if things don't go as planned. I've always been the "butter side down in the diaper pail" type of guy. By that I simply mean not very lucky. I have never won anything that was decided by chance, and am always the one that signed up that "isn't on the list". So I've always worked a little harder, stayed at work a little longer, created my own luck if you will. Well this one has me tossing about like a leaf in the wind, but there are others who've had "mild" results to date like mine and we all seem to have something in common; while that sucks that we aren't seeing the same immediate results, it does keep me hopeful as I'm not the only one. We are all people who don't have MRI's crammed with all these active lesions that are still in the inflamed mode. Two who I know of are fully diagnosed as being progressive. My neuro. suspects that I am because I progress, but don't present new lesions in my MRI and everything that comes, never goes like some people. So I think I'll just have to continue to work a little harder. I'm OK with that. I've always pushed myself hard and actually want to again. It's like my buddy Marie says, turn off the damage and then we can heal. When the source of the aggravation is still there you can't do it. Like a nail in your tire. You wouldn't patch it without removing the nail so we hope that the nail is removed. Now we just have to figure out how to get the patch to stick!

From the above copied postings it makes me think about the potential future of MS treatment. Go get surgery. Then if you start feeling "MS'y" go get your stents cleaned up. Now that would be something. If we could actually expect results from this surgery like we do other surgeries with known outcomes. So I know I just need to be more patient, like always, but it's really hard. As I've stated before, I'm right there at the edge of the disability cliff. I already have some serious physical limitations, but I can still work. That is huge to me as I was laid off for a few weeks and I didn't like the way I felt more than I missed the income. Sitting at home and being in your own world is not good for this. At least not for me. Nothing to do but think and think. Work keeps me distracted, and when you have MS, that's a good thing. I just hope the title of one of my posts soon will be "Hold on to your butts". If that happens, pull up a chair, I'll probably write all damn night!

Thursday, August 20, 2009

Weekly update

And another week in the bag. Pretty benign week MS wise. Nothing really has changed; which as I explained before is a great thing since I'm not on any drug right now. So my update from that is that I feel the same. Not better and not worse. While that is a good thing, the slightly subtle uptick in how I was feeling in certain areas is not there right now either. The one thing that keeps happening that is very heartening is that the people from Italy who've had this done for a while now are speaking up and it's all good news. This week we got a heart surgeon with MS who is singing the praises of this procedure. One thing to note is that it seems like almost everyone, whether they had Dake's stents or Zamboni's balloons, needs maintenance. They need periodic check ups and "tune ups". I'll take that anyday if I'm seeing positive change. That is really all I have to say on the MS front this week as it really has just been a "normal" week. Hoping for the clouds to part and trumpets to blare, but I'll take the normal over the decline any day of the year. There is one anecdote I'd like to share.

One of the first people who had this done was discussing how much shoulder problems she was having, as we all did, and I was just kind of paying attention because my neck and head and shoulder pain went away pretty quickly. Well not so fast! This weekend I started hurting again, but differently this time, and I looked at my shoulder and it looked really odd. I could see my shouler blade sticking up past my shoulder; from the front! Well long story short, I am having muscle spasms in that area and it's actually holding my shoulder joint out of socket. Not dislocated, but out of socket from the spasmed muscles pulling on it. A massage therapist could get it to go back in, but once I would move that arm, out it went again. You could actually see it moving in the mirror. Pretty trippy. Anyway, it's not keeping me from work, but it does hurt pretty bad when I move a certain way. So I will keep stretching and getting massages (torture sessions) until it goes back in. I have my follow up appt. scheduled for September 15th. I'm sure I'll have a lot to say after that. I also have a heavy heart this week as one of our original pioneers that had this surgery passed away this week. She had a hemmoraghic stroke and passed away. It was not related to the surgery, but it still makes me very sad as she was an incredibly positive and supportive force in this effort to get out the word about this procedure. She will be sorely missed and my heart goes out to her family.

So I hope I have more to post next week. This is my 'blah' post with nothing much of substance, but I have been holding myself to once a week and I plan to keep that up.

Friday, August 14, 2009

Lew's screed on why the hell I'm doing this

I don't have to work this afternoon so I thought I'd write something on the blog of substance since my last post was a cut and paste job of my email to my Dr. Dake. So why in the hell am I willing to let someone cut on me and do this when all the magazines I see show all these shiny happy people on these medicines? The answer to that is to follow and also why, as Hillary says, "I'm in it to win it".

Let's start by a little talk about what this shit actually DOES to you. Most of you know me and see me and know I don't "look" handicapped or even sick. However, there is so much that you don't see and that's what the MS community calls invisible MS. There's even a movie out there called "But you look so good?" that follows a few people around who have MS so you can see what they deal with. I mean I'm obviously not going to intermittently catheter myself on the deck when we have company, I'm not going to use a laxative suppository in the front yard, and you can't 'see' pain, weakness, dizziness, lack of hope, and the fear that comes from not knowing. The fear that you get when you start having a relapse. You think "when is it going to stop? Is this the one that takes out my legs? Is this the one that makes my arms useless? Is this the one that's going to make me a prisoner in the house?" All that shit works on you. Even more so when you have symptoms that you feel all day long. And this son of a bitch is relentless. Yes you can have "good" days, but it really never takes a break for a good deal of us.

So every day I have to stretch before I move too much or everything just "yanks up tight" in my legs. Next is into the shower where it sucks because I can hardly stand to be on my feet for 10 seconds without shoes on. Flip flops in the shower? Not an option. The way they move around makes the arch supports feel like a rock and the flat ones you step "off of" and it makes you fall. Then it's into the cold shower because if I take a warm one I can't see to shave when I get out. So I step out and immediately step into some running shoes (cruel joke calling them running shoes). By this time I'm usually good and dizzy and fall into at least the door jamb if not the walls trying to put stuff away. Then it's time for the 'ol pee straw. Let your mind wander, but I do this 3 times a day. Then it's down the stairs where I usually can feel if it's going to be a "good day" or a "bad day" based on how bad my hamstrings and calves scream when I'm going down the stairs (which has been getting better; good thing). Then the ride to work. It's the only ride I enjoy because I know I won't have to pull over in front of somebody's house to pee behind my car door; thank God I'm only 5'8" tall. On a side note, I've been busted doing this by the Ohio State Highway Patrol and he absolutely berated me about "what if a grandma drove by?" until I told him what it was all about, then he had some mercy and didn't write me an indecent exposure ticket. Ask my family how many times I sometimes have to do this.

OK, now we're at work, "stayfree penie pad and all". I know sometimes this is TMI, but I'm trying to educate here! I usually will turn my computer on before I have to take the fun step of a suppository. Once again, I'll spare you the details. Then it's just hoping it works. Meetings are great fun, especially when you're the one holding the meeting and have to pee about 4 times in that hour (that's not an exaggeration). As the day goes on I will eventually have to walk to someplace in the shop. I can do it, but what you don't see is my legs screaming at me to get off of them and stay off for about a 1/2 hour. As I've noted in earlier postings, my recovery time is getting better and that's very welcomed. Lunchtime! This has been MUCH better since the operation but before then it went like this: Walk to car, this act made me dizzy and have poor vision. Go get food, walking into place to eat makes me more dizzy. Take food back to work, be dizzier, eat sandwich in about 1 minute because I have to cram it in fast because I'm nauseous. Once again, this is getting better since the surgery (grateful!). So the things at work that suck are the constant interruptions from my bladder as well as the dizziness and crappy eyesight and the leg strength is a major impairment because I can't do my job nearly as effectively as I should because I can't stand in the shop for long or walk very far in it. Plus if I forget something in my office and have to go back, that sucks really bad also. This whole time something called brainfog is getting worse; you lose the ability to focus and stay concentrated. I have to write down even the simplest of tasks by lunchtime every day.

Go home and it's much of the same, but now there are stairs and things that need to get done that I have no energy left for; and I'm supposed to exercise! I usually do some of them anyway and pay for it by almost falling down the stairs (that's gotten better too!) and having my legs hurt so bad I can't explain it. I'm running out of energy just talking about this so I'll wrap up quick. Then we eat and it's the same thing as lunch time, but by this time in the day, the energy of eating makes my eyes go out worse and makes me REALLY dizzy. Then I have to stop drinking at 8:00pm so I won't pee the bed even with a nighttime intermittent catheter job. Bedtime; pee straw first, and then into bed. Sweet relief! But I have a beautiful wife that I want to show some love to quite often. Will it? Won't it? About 90% of the time the fatigue and pain are too much to even ask the question. The rest of the time it's about a 50/50 gamble. I wish it weren't this way baby!

And there's more that's a little more personal even for me. It's so regimental and you pay for it when you deviate. Suffice it to say that this isn't a complete list and I didn't write it to have people say "man, I never knew" or "wow you have a lot to deal with". You don't look at it like that, you just do what you have to, but after this many years I must say it does suck ass to deal with. Keep in mind that as the day goes on, everything, and I mean everything gets harder as time passes. It doesn't change at that point until the next day. I don't want sympathy for any of that. I just wanted to let people know who may think "why would you go through that surgery, you look fine?". Well think every day, and some days it just gets overwhelming, i.e., the things you have to deal with take more time than the time you have to be productive. And I also need to point out that it was getting worse almost daily. A little weaker, a little less bladder capacity, a little less everything. I also didn't even talk about the mindfuck and how you can't stay focused and you can't just go from pissing your pants to presenting a proposal. If it were easy to just put it in a box and get right back in to what you were doing it would be awesome.

I'm not done, I could go on ad nauseum, but I think you get the point. All of this culminates until you start to lose your sense of self. I was very comfortable in my own skin before MS, now I'm not. You can't do the things that made you feel good about yourself. So you start having low self esteem and everything you do to try to get it back is nuts. Everything looks different, feels different, it's hard to explain but I'll know one group of readers that understand it implicitly. And all of this hits you right in your prime. You're just getting it figured out to the point where you aren't screwing things up with poor decisions. You are usually raising a child and in the peak of your career curve.

Losing the things you love to do sounds kind of benign when just spoken. When lived, it sucks a bunch more. I can't do anything physically anymore, that's a given, but it's even hard to do things of leisure, like camping, just going out, things like that. Golf, could there be a less cardio sport? I can't do that because a couple of swings is all it takes to put the wheels of weakness, dizziness, pain, bad eyesight and other things in motion.

Here are some of the reasons why I'm doing this and it's all in response to not having to deal with this anymore.

Number 1

The drugs with all the shiny happy people in the ads are absolute shit once you get to a certain point. They advertise some small percentage of efficacy, but that's always on newcomers to MS, never on people who've had it long term. And anyone with this disease knows that the first few years are usually pretty mild. My heart goes out to anyone who gets slammed with refractory RRMS. That's a type where the attacks are very severe almost from the word go. I'm fortunate not to have that variant. The trials were all done with newcomers and next time you happen to see an ad for one of the drugs, look for the fine print describing the person in the ad touting the benefits. They'll usually say something like "Kim, 34 dealing with MS since 2007!". Well whoopdee shit; two years out I guarantee I could have outrun, outbiked and outworked 90% of the people I know. That's not me saying I'm all that, it's me saying that the beginning of this disease can be pretty mild for a lot of us. It's all about luring in new patients who are wide eyed, ignorant of the facts of the disease, scared shitless and looking for the answers they usually get at the doctor's office.

Number 2

My jugulars are clogged, they shouldn't be even if I was healthy; next

Number 3

You could put stents in my veins that are perfect and it's not like it would harm me. This isn't an experimental drug where you don't know the side effects. The side effect with this is post surgery pain; something you get over.

Number 4

The etiopathegenesis of this disease is very poorly understood. Even though it's not what your neurologist will tell you, autoimmune is a theory. The antigenic target is not known (thanks Marie) which makes it a theory. Hey, I'm not saying it's not correct, but it's not proven. Showing statistical relevance (enough to get approved drugs) with a bunch of new patients is not a big deal to me.

Number 5

Right now (before the surgery) I was getting worse non stop. I want it to stop and I've been on Avonex, Tysabri and Tovaxin. None of them kept me from having relapses. So why should I keep taking them? They 'ain't free that's for sure and we don't know their long term effects and you're supposed to be on them for life.


So there's my "everybody gives a shit about what I have to say" screed about why I'm doing this untested procedure. The internet forum I frequent; http://thisisms.com has a posting from one of Dr. Zamboni's original study patients. Apparently they are now allowed to talk about it. Some of these folks are 18 months out from the procedure (slightly different, they used balloons, but will be getting stents soon I think) and doing very well. I won't comment on someone else's condition without asking them so do yourself a favor if you're curious and check it out. You register, go to forums, scroll down to CCSVI and the one I'm talking about is under the heading "Press Release Bologna (that's a city dumbass, not a lunch meat!) September 8th". The part in the parentheses is not there! So later until next week!

Tuesday, August 11, 2009

A week with not much to say really

I went back to work last week and that was the real litmus test of whether or not I have gotten significantly worse from the relapse I had before the surgery. I'm happy to post that I did just fine. Nothing better or worse than before I left, so that's good. The dizzy thing at lunchtime, and at other times, is still better and that is a Godsend. I thought I'd copy and paste my correspondence to Dr. Dake this week to describe exactly what has been going on with me. Like I said, nothing much has changed. The reason why that's a good thing is that I had to alter my immediate expectations of what this will or won't accomplish. I have been reading the different accounts of others who have had this done and did the only thing I could do; compare! Well about half of the original "stentoneers" have not had this crap as long as me and have experienced some almost immediate relief in heat tolerance and the like. I know I've spoken of it before, and it's still the same.

So take a look at what all the drugs are really supposed to do anyway. They're supposed to keep you from progressing. After 8 years of MS and climbing about halfway up the numerical disability scale (the EDSS), if this stops my progression? That would be a dream because it won't involve incredibly expensive medicine for the rest of my life that states, and I quote "The effects of Tysabri have not been studied on humans for any more than two years". OK, that's not verbatim, but it gets the point across. And it keeps killing people. The odds are like 7500:1 or something like that, but still, the risk is there. My feelings about all of those drugs are well known and I know I've described them before so I won't belabor the point. So I feel kind of stable and undizzy and still sleeping better and not peeing the bed; bonus! Hey, I know that kind of shit is personal, but if you have MS, odds are you deal with bladder issues in one form or another. So since the creative juices are simply not flowing tonight, I am going to go ahead and copy my email to the "wizard of Stanford". Word is that he's formulating a trial for this procedure. Just like the MS drugs, it seems to have a more profound effect on people who have not had MS for many years. It would be wonderful if you could get diagnosed, and then just go get surgery. How cool would that be? Well anyway, like I said I'm just not in the writing mood tonight, but I have to keep this up, so here's what I wrote to Dr. Dake today:


Dr. Dake,
Weekly status report from Lew Chapman.
Week 4
I don’t feel all that different than I did last week, and that in and of itself is a good thing. I’ve had some good things occur when I expected to be dizzy due to exertion and didn’t get dizzy. I’ve also had some similar things with eyesight, but since my ON is still flaring up when hot, and my dizziness also when hot, I can’t say that it’s anything to speak of. I have tolerated going back on the coumadin just fine in terms of the rash. I got my INR checked this morning and told him he could still adjust upwards on the dosage because my rash has not returned at 1 full pill one day and one ½ pill the next. So if he has to crank it up to get to a 2, I told him that would be OK. But since I was at a 1.2 level on ½ pill daily, maybe it’s correct now, but I just have a feeling that he will want to crank it up so I’m ready if need be.
Some subtle things do feel to be functioning better to me, but they are subtle so take them for what they’re worth, but I’m a pretty self aware individual and my feeling is there has been some real change. First off, let me discuss the things that are no better and no worse. They are as follows:
Heat tolerance – not better in this regard. However, I do feel like I am recovering faster from the effects of heat.
Bowel function – no change, constipated all the time.
Bladder function – no change in terms of voiding volume. However, I have had only one night time accident and I even told my wife “I’m probably going to pee the bed tonight”, as I drank much later than normal by about an hour and a half.
Energy level – unchanged
Leg strength – unchanged. This basically means that I can still only go for about a 1/8 mile continuously before the wheels fall off and I need significant rest to do it again; it doesn’t truly ‘reset’ until the next day.
Things that I FEEL are slightly getting better:
Balance – I have been putting on my pants the old way; ie, not hanging on to something, or sitting down to put my legs and feet through and then getting up to pull them up. This, however, sometimes has me stumbling but not falling, but I can do it more than I used to be able to. But then again I’ve been TRYING this, so take it as you will.
Dizziness – this is a biggie for me. I don’t feel as dizzy as often. Every day around lunch was a guaranteed time I would get dizzy. Every day. It hasn’t been happening here lately. I still do get dizzy however, but once again I feel like I recover quicker.
Eyesight – my eyes don’t “go out” as often as normal. It was taking almost an insignificant amount of effort (like eating or having a semi loud conversation like in a crowded room) to make my ON flare up. Now it seems to take more effort for it to do so.
As I’m writing this, I’m noticing a trend. All the stuff that I perceive to be getting better is all “head stuff” and the other stuff is more functional system stuff. Maybe I’m wrong on that, but it does feel that way.
My neck and shoulder pain are manageable. I haven’t taken any pain meds for about a week with the exception of a couple of Advil from time to time, so that’s good. My spirits are good as I have lowered my expectations for this. Allow me to explain; I have taken to expecting my progression to stop sans drugs. If the CCSVI procedure does that, that is an enormous success. I needed to quit thinking I was gong to be running again; who the hell knows what type of repair will happen, but even if it works out that way, I don't think it would happen this quickly. To think that I’d get back to normal may not be realistic seeing as how I’m a 4.5 EDSS’r and I’ve had this for 8 years now. Also there is the distinct possibility (who really knows on this?) that I am SP. I say this because my neurologist (new one who ordered the latest MRI's) is saying my MRI is pretty unremarkable. So undoing damage is probably more up to me if we did indeed “stop the bleeding”. That is my hope now. We can get used to anything. People who get disabled from an accident or something can adapt because their baseline isn’t always changing. Ours is always getting worse, and it’s so hard to keep adjusting to be able to live your life once you’re saddled with a certain amount of disability that just keeps changing. So if we could shut of the damage spigot, I think I could adapt and even overcome some things. That’s my hope anyway.
I look forward to mid September (our follow up time) and will keep sending you weekly updates. Hopefully you’ve encountered so many different scenarios by that time that my “bucket handle” collateral and my “pancake jugular” will be old hat to you and you can just “cut with confidence”! OK, I know you aren’t cutting us, but you know what I’m trying to say.
I just got back from a big grocery store I frequent to get fresh fruit at lunchtime. It’s all the way in the back of the store and I inevitably get dizzy and have poor eyesight just by the act of retrieving my lunch. I feel pretty much the same as I did when I left to go to the store and that’s an improvement since it also happened that way all of last week. So the new mantra for Mr. Impatient Lew is “there’s no progression...... like no progression!”
Take care and have a great day,

Lew Chapman

So even though I repeated a few things in the opening paragraphs, that is pretty much how I communicate with Dr. Dake. He's a busy dude so I think email is better since he can just get to it when he has a minute vs. a phone call. I promise I'll get more philosophical and write more next week. It's so cathartic for me, but my daughter is getting a bass lesson and I want to go and eavesdrop!

Wednesday, August 5, 2009

Another week in the books

So here we are three weeks out from surgery. Do I have a lot to tell? Not really. I'm back at work, so that's a good thing, but things really haven't changed much to speak of since "the tilling incident". I'll post about a positive thing that has happened, but I need to be cautious since these are just things I've noticed since getting back into the routine of work. I don't, and won't, say that anything has 'worked' until it stays with me for about a month. We all know what a roller coaster this disease is. My neck still hurts, as does my head when the neck starts hurting. And I can't take much for it since all the anti inflammatories are somewhat contraindicated with Coumadin. Oh yeah, I'm back on that stuff that gave me a rash. I went to get my clotting levels checked and they were totally normal. Sounds good huh? Well not when you are supposed to be at a therapeutic level that is a 2 (takes twice as long as normal for your blood to clot) and normal is 1. After I found out the price of my only alternative, a drug called lovenox, I decided to risk the rash again. I was having all kinds of bad side effects and reactions all at once when that rash came on, so I decided I wanted to chance it again since it was just a nuisance and not causing any anaphalactic (sp?) type stuff. Well I'm only taking 1/2 a tab and will find out tomorrow if that is getting it done.

So the positive change is a very subtle, yet very exciting thing to me personally since it's one of my truly shitty symptoms (like any of them are good!). Ever since I have had dizziness, about 4 years now, it always seems to crank up at certain times of the day that usually coincide with increased activity; imagine that. Well lunchtime at work is one of those times. The getting up from my desk, having to go somewhere that involves walking, and getting back to work virtually always makes it crank up to where I force feed myself my lunch every day; even at home. So for the past three days, it has not come on at all during lunch. It has been heartily enjoyed as I actually enjoyed my lunch these past few days. Anyone who has this fun filled symptom hates it with a passion. I spend a great deal of time with my eyes shut and my hand over them trying to get things to stop spinning for a while when this happens. Just ask my wife what I usually look like when I'm eating. It has become a task of necessity, not of enjoyment whatsoever. And when I have to grill something? Get outta' here, I just grin and bear it and hate every minute of it. So I say this very cautiously since I still am getting dizzy at times throughout the day, just not as much. Real? I don't have a clue, but will keep posting about things as they happen. I will also always retract anything that goes 'back to normal' again. So any positive thing you see me post about, I'll take back if I have to. I'm not selling this procedure, just reporting on it. I feel almost dutiful about is since there are basically no alternatives for me and plenty of others anymore. We know the drugs don't work, so this is it! I even went off the Tysabri and haven't had an infusion for about 9 weeks.

So it's a semi-reluctant post this week since I don't have any good stories to tell. That is a loaded statement however, since no change with this shit is A-OK in my book. Keep me the same for a while, and I can get used to my state. That's what sucks about this. It's not like it's an injury where you can get used to your new disabled state of being and adapt and it becomes your new reality. This son of a bitch just keeps getting worse. Once you get used to what is going on, it gets worse. It saps you of hope, it saps you of lots of stuff. But we have to persevere and not getting worse while not on any drugs is maybe not a home run, but it's at least a double. Like I said though, if I get worse, you all will be the first to know. I owe it to every one who is reading this, especially those of us lucky enough to have this shit. The other thing that I have been THINKING that I've been noticing is that I seem to be recovering from a lot of walking faster than before. I hesitated to even write that since it's just a feeling, but it feels that way, so I'll mention it so that I can kind of drive a stake in the ground and see if it gets better or worse. I'll let you all know.

The last thing is that my 'check up' is scheduled for Sept. 15th. You all remember me posting about my weird left jugular that we did not operate on. Well my Dr., armed with 20/20 hindsight has expressed some angst about not doing that side as my heat sensitivity didn't improve quickly like the others have seen. But it wasn't anything he should have done. These are uncharted waters we are in and he is learning and we are his teaching moments. So when he sees me again in Sept. he will analyze that side full on and will do what it takes to get the flow right. Could that mean all this fun post surgery stuff again? It sure could, but I have to do it anyway. Hey, I'm all in. The very first guy that had this done that has seen a lot of very good results needed some clean up in one of his jugulars as well, so I could be fully blocked again and not even know it. This is all just so new, but it's really gaining steam. I hope and pray every day that this is it, and am almost Eeoyore'ish about it (new word! you know Winnie the Pooh's negative donkey friend) since I really got burned with the stem cell thing. I was micro analyzing everything and posting stuff that would just happen one time like "I stood on one foot in the shower today!". Well I was TRYING to stand on one foot to see if I could. So while that was viewed through rose colored glasses, this one is being looked at through shit stained glasses. If it's real, it will shine through eventually, but I'm not about to take that fall again. It's like I said in my first post, I haven't even allowed myself to fantasize about this working. The let down is just too great. So I'm just living my life and if after some period of time I notice "hey, what was that?" then that will be just jim freakin' dandy.

Not getting worse and some things maybe getting a little better are probably more realistic expectations than the clouds parting and the trumpets blaring so that's where I'll leave this one in terms of "new news and changes". Stay tuned for next week's post and keep your prayers going and your fingers crossed that I have good things to say by next week. I don't imagine it's going to happen that fast, but like I said, cautiously optimistic is the approach I'm taking. It's so strange to even fathom not having this disease active anymore. As I already said, I don't go there concerning the "things I'd do", but just thinking of that pragmatically is just hard to do, almost like I can't anymore. I don't even have dreams where I'm healthy anymore. Occasionally I'll have one where something that doesn't work right, works right. It's usually my bladder, and I just dream I'm going like I just had a 12 pack. And then, inevitably, I wake up with wet trousers. That also hasn't happened since I've had the operation and THAT is huge. Sometimes I think about the movie "Awakenings" with Robert DeNiro. I know it's probably taboo for me to even bring that up, but I was thinking it so I may as well verbalize it. That's my greatest fear about this. So you can see, my head is all over the place with this. I won't kid you, it's caused me to think about my MS much more and I hate that. However, the potential to not think about it because you're not experiencing it is why I jumped in. I sometimes re-read what I wrote and want to delete it, but what the hell, this time I'm letting the thoughts fly out and see how it goes. Now I know my friends and I know Geno will probably say "delete that (insert expletive of your choice here)!", but this time I'm not doing it!