Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Boy I hate this, plus some random KA thoughts

I'm sitting at my desk right now, about to start my work day (half at home, half in the office today, I think), and unfortunately I am just in agony this a.m. At least I know WHY this flare is hitting, and while it is my own fault, it still points out one of the things I just absolutely hate about AS.

Monday, I went over to Casino Windsor to play in a poker tournament that started at 10 a.m. (man, is it hard to make it in time for that too, but all of their tourneys start then). Got there at 9:15, signed up and played, finished 25th out of 60 plsyers, well out of the money. No big deal yet--had fun, and it was only about noon when I left the poker room.

Well, I had planned to make a day of it, so I went downstairs and started playing blackjack. Right away, it became obvious that I was in for a special day. I started winning hand after hand, and with almost every shoe, I ended up with more money after it was over than when it started, which is a very rare occurrence (far more common to have some winning shoes, some losing shoes). To make a long story short, 11 hours later, at 11:15 p.m., I walked away from the table with a profit of $2100 Canadian! (net in U.S. funds for the day after counting poker, etc. was $1700. This was just a $10 minimum bet table mind you--it's not like I'm a high roller. I definitely did bet more on every hand once I began winning, but still--to win that much completely defies the odds and is a remarkable, likely once-in-a-lifetime day (my previous high was $800). One thing that helped was that I was playing a version of blackjack that has a sidebet players can make that pays off handsomely if you hit it, but it's known as a sucker bet because you don't hit the big payoff very often at all. Still, I enjoy the sidegame, and it really upped my winnings Monday, as twice I turned a $25 bet into $625.

When I left at 11:30, I was sore, but not terribly so--more tired than sore. However, I knew what I had coming in the next two days, and this is where the "hatred" part comes in. I knew that because I sat in the stools they have at the casino for 11 hours (sit in my own chair for poker), I was going to be in agony on Tuesday and probably Wednesday. Sure enough, that has been the case. Woke up on Tuesday with my thighs, knees, and ankles just on fire, and my left arm was almost useless it hurt so bad. I did feel better as the day wore on and I moved around some, but by bedtime, agony all over again, and it's even worse today. I've always been the type of person who, when I exercise, I hurt more on the second day after instead of the first; many people have told me they are the same way. It is the same when I do something like I did on Monday.

And that is what I hate--I know, without a shadow of a doubt--that if I want to do something fun, something I really enjoy, I am almost certainly going to pay for it the next day or two. Want to go see friends? Get ready to hurt after taking the stairs into their house and sitting in your desk chair all day. Go up north for the one weekend each year where I get to see all my old friends? Might as well right off most of the next week after having to sit in the desk chair all weekend and sleeping in one of my old lift recliners that I donated to the home's owners so I would at least have SOMEWHERE to sleep. Stay at the casino a bit longer than normal because you're on the winning streak of a lifetime and living it up? Enjoy it, because the gates of hell are opening and you've got a room reserved there for at least two days.

It just sucks, sucks, sucks. Every good time is automatically followed by hellish pain, no matter what I do to prepare in advance. I very, very rarely trot out the "dang this disease isn't fair" card, but on this one, it's hard to view it any other way. With me feeling worse and worse these days, I have started bypassing visits to friends, family cookouts, other fun things, just because I can't handle the consequences. It's one thing to not be able to do certain things because of my handicap--for example, I really miss golf--but with things like that, I understand and have made peace with the fact that the changes to my body keep me from doing certain things and that, honestly, that is no different than it is for just about every person in the world. How so, you ask? Well, not everyone is limited by disease, obviously, but everyone has their limitations. For example, millions of kids play organized baseball when they are young, but by high school, most realize that they just don't have the talent to keep playing the game. so they quit. They might miss the game terribly, but they recognize the reality. That's what I mean when I say that, in my mind, I can handle the things I simply CAN'T do anymore because everyone has things they can't do.

However, to pay such a steep price just to do the things I still CAN do? I consider that to be a different story, and that's where I let the awful "unfair" thoughts creep in, as hard as I try to keep them out. The one saving grace is that I know I should feel much better by the time today is done, if my usual pattern holds out. There is a chance that may not turn out to be the case, though, as I have noticed that it is starting to take me longer and longer to bounce back from the fun times, and I can't help but wonder, is there going to come a time when I just stop doing the fun things because the recovery period is too harsh? I sure hope not, as I would likely just give up if that happened. I am about to embark on an eight to twelve-week period of physical therapy while I take a leave of abscence from work, and I have high hopes that I will build back some of the strength and stamina I've lost since I tweaked my knee last year and that the payoff from that will be a reduction in the downtime following the good times.

There's today's gripe. I know I have done a lot of that here lately, and I apologize for that, but that's just the way I've been feeling. Also, to manatee and a few others--I know I have not been around very much for you lately and thus I have not been providing as much support as I had hoped I would be able to. I am very, very sorry for that, but it's just been a really rough patch, what with the dental work, the chronic iritis, and some other big stuff that's been going on. I want you all to know that I do think of you all every day, and that I will try to get back here more often to return the support and kind words that I always find here from the great folks of KA. Manatee, I read about your knee going out, and it just made me cringe to read your description of what happened. I am SO sorry that it keeps getting worse, not better, and I will do my best to write a much longer PM to you tonight, ok? Until then, hang in there and know I am thinking about you.

Old George, happy birthday my friend! I hope you and Dorrit are able to celebrate in whatever fashion you enjoy the most and that the coming year blesses you with good fortune and happiness. I am going to shoot you a PM tonight also--a couple things I want to touch base on, incluings X-Men 3 now that it's open!

To everyone else, I hope you find yourself feeling better, not worse, with each passing day, and if that isn't the case, then I hope you have the support you need from friends and family to help you get through the bad times. I'm thinking of each and every one of you whenever I visit KA to read posts.

Gotta run and get to work now. Thanks for listening--honestly, I feel a bit better phsyically already, and I know writing this played a part in that.

Brad

Brad, congratulations on the big win at blackjack!

I am so sorry that you are feeling so badly after such a good day. It truly is most frustrating. I wonder, is it possible for you to stand up and stretch out a bit while playing such long hours? Is there some casino rule against it (I don't know these things, you see)?

Regardless, I hear you my friend and am sending you a huge hug.



Take care of you.

Many Hugs,

Thanks Kat--it truly was more fun than I've ever had gambling! Amazing how much more fun you have when you're winning (although I tend to have fun even when I'm losing, if the company at the table is good!)

Yes, it is definitely ok to get up and walk around, stretch, etc. during the game, and I did get up and use the restroom several times, hit the gift shop, and take breaks to go off and use my cell phone (using cell phone at the table is strictly prohibited). Not nearly as much as I should have, of course, but ask any gambler--you just hate to change ANYTHING when you are on a hot streak, let alone leave the table. Some players have the willpower to ignore silly stuff like that and act the same whether they are winning or losing, but they are the exception. Most will sit right there without moving until they feel their luck has changed--and they they'll sometimes change EVERYTHING so that they can get rid of the bad karma that has suddenly shown up! I'm definitely not a totally superstitious ninny at the tables, but if I'm winning, I won't leave the table unless my back teeth are floating or the casino is on fire. (In fact, it was funny yesterday--during the poker tournament, the fire alarm actually DID go off, and nobody even batted an eye, let alone moved! We learned about five minutes later that they were checking to determine why the alarm had gone off (still could have been a real fire for all we knew), and it took a full 10 minutes before they gave the all clear. Not a single player--or dealer, for that matter--made a move.)

So, because I was winning almost the entire time yesterday, I didn't get up and move around nearly as much as I should have. Heck, I fully admit that I brought this flare on myself through my actions (or inaction) at the casino, and even getting up more often wouldn't have kept me from feeling bad for the next couple days--I would have felt a little better, but not much. I'm just bummed that doing something that initially brings me such enjoyment ends up bringing me such pain, and also that the action that does bring me pleasure wouldn't bother someone without AS at all the next day (well, I imagine anyone would be a little stiff after sitting and playing that many hours, but you know what I mean).

I must say though, the one thing I didn't make clear enough in the first post is that $1700 takes a WHOLE lot of the sting off the next two bad days, let me tell you!

Brad

Yes, Brad, $1,700 certainly would take the sting out.

Many hugs,

Your joy at having had a great time shines through in your post. Keep doing what you love, live life to the fullest, and treat yourself to a good masseuse with all of your winnings to compensate for any pain.

Brad,

This may sound corny but I really feel your pain. I was only recently diagnosed with AS and it was actually a relief that my symptoms were related to an actual disease and not just because I was getting older. Over these past few months, I am slowly coming to grips with the knowledge that life as I once knew it is over for me. That is a harsh reality for someone 52 years young but as I read the posts of others here, it is comforting to know that I am not alone. And... although I do not wish this on anyone, I see that others are suffering far worse than me and I should be thankful for what health I have in the here and now. Simply put, I'm living one day at a time.

We do not know what the future holds for any one of us. Although it is a morbid thought, we do not have a promise of escaping pain or even death. Like you, I am one of those determined and persistent characters that never want to give up. I've vowed that as long as I have a breath in my body, I refuse to roll over, stick my feet in the air, and die. (Insert intrusive image of a dead bug)

If it is any consolation, I was inspired by your courage to write such a heartfelt post and essentially expose the raw feelings. Too often, we men hold it all in thinking that it is somehow a measure of weakness if our feelings are expressed. That is a myth spun by society and probably has destroyed more lives than we care to admit. Count me as another sufferer virtually standing beside you as tall as I am able (only an AS sufferer would understand the irony of that statement). If you promise not to give up at least one activity that you enjoy, even though you may suffer for it later, I will do the same.

BTW, congratulations for your winning streak at the blackjack table. I envy you because even though I love to play blackjack, I have never won. I agree with Inanna, take some of your winnings and treat yourself to something special that you enjoy (whatever that may be).

Patrick

Gidday Brad,
Hi its great to here from you and I had noticed your absence.Ihope that the Iritis has gone ..it is such a buggar to get rid of. congratulations on the great day out...it has always been a dream of mine to hit the casino with a few dollars and srike it rich ,so I think its absolutely fantastic when I here of somebody winning. I realise what you are saying about paying for it the next day and try not to let those thoughts stop you in the moment or in planning something that you for sure are going to enjoy.Guess youve been smiling a tad lately after that dental work all the best[and for those sucker bets]take care,jude2

Congrats on your big win.

SOrry about the pain. Guess we have little choice but to submit to it and find a way to minimize its effect on our lives. $1700.00 should help miimize the pain.

I was a bridge junkee. Play with buddies from 8PM till 3 AM all the time then drive home an hour. Alway knew it meant serious pain the next day and only stopped because the group broke up not because the pain won.

Still playing golf here altough few would call it golf and it was good once. Although I took my ids to amusemet park overth weekend and tried winning the girls an arcade prize by throwing a dart and nearly passed out from the pain a dart toss caused and looked to the heavens and offered choice words. So I do so commiserate with the frustration of loss. My body is a joke compared to what it should be and I am a control fanatic with no control over my own physical presence.