Ok now I suppose

Ok. Yesterday was long and tough. Started out with paper glitches even before the transfusion. Nobody seemed to know where we were supposed to go. Left hand not knowing the right hand thing. After walking all over the place twice I told them I wanted a wheel chair and somebody to push. I was just way to weak to walk anymore. Good thing...when it all got straightened out they took good care of us. Transfusion went very smooth and quick. This am <2:30am> had to go to bathroom, then back to bed. Not normal but was ok. This morning there was more blood in seepage and couple times so far its been tinged. Took 5 mg cudimin last night and lot of movement yesterday so it dont' surprise me. Did IHOP for breakfast this morning and still tired but not like before. Feel pretty good as far as that goes but just tired from the running yesterday. Just gonna veg out today on the couch and see how all these meds work on me. Iron pills making me cramp but when ya need it you need it. So med wise i'm on Imodien, Neflix Cudimen, Imuran, Vitamin D, Irion suppliment, and drink lots of water. I still stay the cudimen is makeing me bleed more then I should. But I understand the Imuran lowers the results of the cudimen so i'm gonna take my full regement of imuran today. 100 mg this morning and 100 mg tonight. Dr said I could start low for afew days to see if there is any reaction and there has been none thus far. Ok..nuff rambling. gonna go on Wow for a short time then nap time :)

Moving fast

Ok. Just started new meds today. Along with my prednizoen and imuran Dr. added Iron suppliment and Vitamin D supplement. Also started Imuran today. She said I could start with just 1o0 mg daily for a week to see if I have any bad reactions to it..then next week move to 200 mg daily. I know this is not a mircles drug but hoping it does help aleviate the symptoms of this terrible disease. When I spoke with Dr. yesterday on phone she said my hemoglobin was very very low and wanted me to have a blood transfusion. I hesitated and waited to talk it over with with then called Dr. back yesterday evening and said we would do it. Just now got a phone call from the Cleveland Clinic asking if I could possibliy make it out there today..which was no not going to go without wife being with me. Way way to weak for that, so they are setting it up for tommorow..Wow..they move fast when you tell them you have short time insurence LOL. Was told after the transfusion I"ll feel tons better.. that my low blood and iron is what is make me so weak. Believe it or no not i'm excited bout it. Want my strentgh back. I get exhausted walkin down hall way or sometimes nod off just setting up at computer ;((((. Had nice evening last night, my 12 year old came in and set with me to watch the Cardinal and Braves game. Something he dont' usually do. Matter of fact he set with me most of the evening playing on laptop or watching game. Right now i'm pretty tired but feel I need to stay awake..see the effects of these new pills before I totally relax. And of course wait on another phone call bout the transfusion...whether i'm to continue taking my meds or stop till its done or what. Just want to do whats right . don't want to do anything that would set us back any. ok...nuff for now. WoW still down so bored to death and will prob play on yahoo messinger.

Doing better

Last night was a good night. As well as yesterday being a good day. Did the 2 dr appt. and the cumidin numbers were rigtht where they needed to be. Bad news is they want me to stay on the Cumindine another 3 months. My TPMT /IBD Serology tests came back normal. But then thats now really a surprise as my body has not been a rule of thumb follower for years. I need to go today to take another set of blood tests. Dr called yesterday and said she was going ot start me on Imuran high dose's. And still treat this as she has been. My flareup has eased and I"m feeling much much better now. Want to get my strength and stamina back and my over all goal is to reach at least 80 pecent back to health. I know I will be plagues with pill eating and Chrohns the rest of my life unless God deals me another hand. I accep;t that and as with many other things I will move on. I have a phone appt with the local chapter Director of CCFA friday and really looking forward to setting up this Comedy Benefit. A project like this could be a shot in the arm for the Crohns Organization as well as keeping my mind busy on someting other then my worries. Still no answers about the SSDI as yet but I know these things take time. OK nuff
ramblings again. Thinking of breakfast..yup i'm feeling better.
More later >>>>

And another good day

Last night finally got to feeling good enough to go to a my sons Little League baseball game. Had a good time and didnt' get home to late but was exhausted. Did learn a lesson couple days ago. Have to introduce different things back into my diet slowly. Made a smoothie with bout 4 different kids of fruit and soy milk..was great!!! But next morning was rough. Note to self. Make smoothies but only one or two different kinds of fruit to see reaction. I get tired of being sick sometimes and drop into mild depression but something always pops me back up. I feel for my family so often because of what they go thru. I can take a couple pain pills and nod off but they can't..they have to face the situations everyday. Not that I do take the pills like that but the point is it would be easy for me to do. Did the laundry and dishes yesterday.. trying to get back into some routine again. Been trying to get intouch with CCFA directors also. I have a local producer friend that is biting at the bit to have a Crohns Awareness and fund raiser comedy show. We are thinking along the lines of one successful one he did few years ago up north for another charity. A beef and beer show. Have bout 15 comics and lots of plaing ole beef and mug of beer for one price. Would work out the donations and cost as we set down and plan it. This would be good tihng for me to get involved with as would keep me busy and not thinking of my issues. Just trying to get grip on this thing so it don't control me..but rather I can somewhat control it. Nuff rambliong for now.

Good day

Yesterday was a very good day. Started out semi rough, though. You see I have an iliostomy also, which came with the first hospitol stay before I was diagnosed. This means I have a bag attached to my belly..acutally lower, that part of my intestines opens into. I know..ugh, sounding and yes it can be gross to think of but its hidden respectfully. This is what I call my poop shoot now because my bum don't really work other then thru seepage or bleeding because of the Crohns. Well this bag has to be changed bout every 5 to 7 days and emptied 3 or 4 times daily which is no big deal. Yall set down to poo I just need to be able to lean a little LOL. Either way as does happen occasionally the bag poped loose and leaked during the night. Ended up with an equivilent of babys diaper poping loose and poo everywhere. Well 4:30 am we were cleaning up poo and bed cloths sheets adn all were in washer. I was in shower and the day had a very very good pontenital to be bad but I was feeeling great physically though so wife or I either one got upset over the mess. Just took it in stride..fixed it and continued with the day. Which was very good. Today I feel about as good so far but not going to push it. I feel cofident that this flare up is residing and hopefully by the time I see another one starting i'll be on the new meds and I'll weather the storm easily :). KK nuff rambling for now. I"ll be back here soon today I suppose.

UGGGGggggghhhh!!!!!

Ok, Been lacking on posting last few days. Been tough in flare up to even want to set up. Had dr appt yesterday which was good. She setup blood tests and wants to put me on Imurine which is good. Went out to eat last night, sorta celebrating. So I over did it last night and had breakfast this morning. So again I have over did it because I had another dr appt today. I"m exhausted now. Even had an "accident" before I got on elevator to drs. floor. Felt yucchy and very embarrsaing. Of course no one could see anything but I assume the odor was there. Was slightly humiliating but we continued to dr area and wait for her. Got the cumdine setup for the next week but I declined to go wait for blood tests today. I have bout 6 of those I have to go for but I was way to tired and messy for that today so, wife is off work thursday so that will be the day we do that. I'll rest the rest of today and she has to work tommorrow so I'll be a couch potatoe tommorow to gather my strengh for that blood test adventure. Right now just sorta dozing off and on on couch while I wait for WoW servers to come back on line. I'm also turning over in my head a project I need to get rolling. A local producer freind of mine has showed an interest in setting up a Crohns benifit show of somesort and I am kinds doing some idea and trying to set up coordination with the Local Chapter of CCFA here. Thinking along the lines of a Beef and Beer CCFA Comedy show. Just going to have to set down and hash this out as to what we need and what donations and support we should seek for when. I have no doubt we can come up with the talent, as there are some great comedians around this area profesional and amatuers. Ok...gonna rest a while. Talk at yall later.

Details or What has happened to us?

Being home bound pretty much, you learn to pick up on different things. Details over several weeks or months and patterns. Was watching the news this mornings, a depressing habit at the best of times, and they metioned a 911 call because someone didn't get the amount of shrimp they oredered or paid for at a restraunt. Whats that about???? 911 for that? And it set off a flag in this ole peabody's mind. How many times in past years has a 911 call been reported because of an issue involving late food or out of food at a drive thru? Now you guys can split hairs all you want and justify all you want but but in my honest opinion....911 was life or death emergancy number. Even when in doubt it was ok. But get real!!!!! What kind of society are we that prouduces a wise answer to problems long long time ago and now we use it because they ran out of chicken macnuggets. And report it on national tv? Doesn't it just sort of scream of help for the person that made the call for one. They definately have issues if they think they have to call 911 for something like that and think they have a right too do that. Now you come to societys issue. We let this happen. Even promote it by reporting it because "the people have a right to know" BS. Somewhere in the years and names of all the phsychoisis and stuff someone has a name for this behavior and these people with it or which show it has slipped thru the loops with no help or diagnoses. Is it important? Yes it is because a simple truism. Nothing that starts simple stays simple. And thats true in anything, from building to life. We always speak of our foundations when we were raised. Good strong moral foudations. Hmmm seems like we miss on several of those anymore. But if that foundation is off but an inch....just a small corner off one inch, then higher up or further along we go the more and more that corner is off. And if not measured as you go no one will notice till it gets to the point that it becomes a major issue. Calling 911 over a food order in a drivethru is a major issue. Reporting on that same action is a major issue. Come people. Get real. There are way more important things to report on and more important things to complain about rather then Call 911 for food issues. ok..nuff for now..maybe more later.

Rough

Sorry haven't posted last few days. Its been a very very bad flareup. Lots of bleeding and some very bad, painful cramps. Pain so bad make me break out into a sweat. Yesterday was terrible. I have an iliostomy bag so I have no control over when anything comes out of my bum. Wife was as work and I was in so much pain and accidents happen. I feel so misserable. Finally I gave in to taking some pain pills. Feeling much much better today Seems if I keep the tempture cool my swelling is not so back and my issues see to lesson. or at least the impact does. Eating very very little right now. Munching on crackers and drinking chicken broth. Just hoping we coming toward the end of this flare up. We guessing this was triggered by a cold. So i'll have to be more aware of who is around me and if there is a cold floating around. The fact I"m taking cudimin <> for a blood clot isn't helping either. KK pretty tired already but had to get here to say something. Back to relaxen a bit. I"ll try to update more tomorrow.

Day Behind

Well did get to go to the game last night. They lost but had fun. Thats what its all about. Was close game but good one. I was feeling a little worried but there were no problems as I cleaned up and prepared before we went to field. Even took my meds with me so I at the proper time I could take them. Was feeling better last night. Less bleeding or cramps even. Played it safe though and had just chicken soup for dinner. I can tell from my own mind that this flare up is easing, as it has seemed to pick up on some comedy issues. Oh, yeah, I forgot to mention before I got sick I did standup comedy as a hobby. Would got to different places that had open mic night and run my set. Ever changing set that is. Hollywood improv here in Fort Lauderdale required you to bring at least 10 people and they would put you on stage for 5 minutes. New York Comedy Club of Boca Raton does the same. Been to both several times and had blast. Believe me when I say 5 minutes can be an enternity when forget your next set up, or worse get it backwards. In front of 200 or more people my attitude is to laugh it off and keep moving forward. You only have 5 mintutes to elicit an emotion that is usually reserverd for close or personal situations. So in first 10 seconds you need to mentally be setting at each table conversing personally with each individual and telling them your setup. When I'm feeling better my mind seeks these set ups, of course in everyday settings. Ok... just called for breakfast. will be back shortly.