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!


  1. Maybe the problem with the other juglar is causing you not to feel as well as you hoped. If Dr. Dake fixes, you may (will) see much more improvement. Don't give up.

  2. Lew here. No problem on the giving up front. Like I said, I'm all in. As long as others are seeing results, I will stay in and keep striving. And like my post shows, nothing is getting worse and little, itty bitty things are improving and that's probably the realistic expectation anyway! My check up will indeed be telling.

  3. Lew...we had the same "Awakenings" /"Flowers for Algernon" talk in our house. Trust, but verify. Time will be the true barometer for this procedure. So far, so good, and still getting better.
    Hang in there!
    Momma J

  4. Lew, I have been following your posts on TIMS and made my way over here to read about ur experiences. I feel like you're my long lost twin. I mean its really weird, we are about the same age and in the same boat in terms of disease progression. For pitys sake, my wife says we even look alike. You have a gift for describing MS in ways I have never imagined and your words seem to come straight from my own thoughts. Your honesty and cander about this b.s. disease is really refreshing as well.
    I sure hope this ccsvi is the real deal. I am sure there are many of us living vicariously through your experience and I look for your posts often.

  5. I Lew, it's Cheryl. I read all your posts to stay up on your progress. I think about you often and only hope this works for you and others. I am attending an MS charity event this evening - looking forward to it. Tell Bren C-HO says hi!!

    Take care and I check your blog everyday. With love, Cheryl.

  6. Lew,

    I look for your post everyday and was concerned when you hadn't posted since about a week ago. Prayers are still pouring in for you and don't give up, things change for the better when you least expect it.

    cindi & greg

  7. thanks for the update Lewis, hang in there buddy. we are all pulling for you down here in Texas.

  8. Lew - great post on your blog. I appreciate your hesitancy to post something positive is like you need to "knock on wood" for luck before saying anything because you do not want the good to go away. The little itty, bitty things will start to accumulate ( at least they have for me). And, if you remember, we all said if the CCSVI just stops the progression we would be happy. Now we want more ...greedy people that we are.
    Take care,
    Sharon (TIMS)

  9. Lew, Waiting on your weekly post!!!


I've figured out how to get everyone to be able to post on here.