Keep me in mind
For those that pray I would really appreciate a mention. Those that do not maybe have a good thought or so for me. If a few agnostics are out there a "hey, if your up there" would be appreciated.
I have something called myleodyspalstic sydrome. This means that down on the stem cell level my bone marrow isn't producing enough decent blood. I'm on thousands of dollars of medication that mostly get paid for by insurance and one that doesn't to the tune of $6K a month which is more than my gross income. Fortunately in that case the drug company stepped up to cover it. But while, yes, this does cost money even with insurance money is not what I'm looking for (don't test this by sending me any). I'm looking for the prayers and thoughts and I'm also looking for folks to do the everyday things that will save a life of someone who don't know. Hey it could be me ("ALL I knew about Steve was that he liked Gordon Lightfoot a lot") You know a lot of this - give blood. I have to do day long transfusions every two weeks right now. I've become aware at just how much of this they need. The hospital has been getting it from all over. Today I got a unit from San Juan. My Spanish isn't any better. Fill a donor donation card. I don't think anyone is going to want much of my body parts when I no longer use them but they are quite welcome to them once I'm done with them. Maybe look for a spot volunteering in a hospital to hang out with people like me whose battle during the day of the transfusion is boredom. I read, listen to my Ipod and watch a tiny bit of daytime TV. You don't know how isolated you feel until you meet the threapy dog and realize how much of you is in that dog and your relating to it. Just some thoughts. Thanks for reading. |
Re: Keep me in mind
This is not pleasant to hear, but hang in there my good man. :(
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Re: Keep me in mind
healing thoughts are on the way from the Toronto area..
I know from experience that the folks here and in the Lightfoot fan community elsewhere on the net have helped me and mine thru several crises, a few of them medical and I am ever thankful for their support..they are as fine as fine can be and you are in our thoughts for sure. keep us posted about your progress.. Char |
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You'll have plenty of good thoughts emanating from this end. I'm still plodding through the Steve Goodman biography that you brought to my attention. Every time I pick it up, I'll think of that short guy named Steve.
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Hi Fezo,
I pray everyday. I will keep you in mind and pray for you too. A few years ago, two eye doctors told me that I had macular degeneration. I felt, ... lets say, 'not too comfortable' about that. I heard about a healing Mass in Duluth, MN and I went. Later, I went to the eye doctor and there was no sign of macular degeneration. I hope everything gets better for you. |
Re: Keep me in mind
Thanks. folks. I knew I could count on this crowd.
Very happy to hear from someone who is reading the Goodman biography! Really weird to read that as a short guy named Steve who plays (though not anywhere in his league) and has screwed up blood. I really don't want to join the bone marrow transplant club but you do what you've gotta do. Another couple of months before we could be looking at that. I've actually E-mail ed the author, Clat Eals a few times. Nice guy. If he ever comes back this was promoting the book (he did an East Coast tour but before I knew about the book) he'll have me play Goodman music at teh signing. That would be way cool. I sent him a copy of my CD and he wrote me a really nice review. MAkes up for a lot of negative going on. Had another transfusion yesterday. That's about 15 in a year and a half. Regular 9 - 5 experience. I have to keep going - even though I'm 57 I have young kids. I started late and kept going... 19 down to 7. All girls. 4 of them. |
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healing vibes from the land downunder!
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http://fezo1.fileave.com/mp3s/02_Tak...For_A_Walk.mp3 http://fezo1.fileave.com/mp3s/01_Is_...n_Done_Yet.mp3 http://fezo1.fileave.com/mp3s/05_Mom...r_The_Rain.mp3 http://fezo1.fileave.com/mp3s//03_Ou...iams_Songs.mp3 |
Re: Keep me in mind
Being as discreet as possible.... I still have CDs. $15. Drop me a line - fezo@rocketmail.com
Thanks, folks. Just had the guitar out earlier tonight with one of my 7 year olds playing percussion with chopsticks on a paper bag and table. Not bad. |
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Well, had a little scare over the past couple of days and I thought I'd be in for more blood but false alarm.
This by no means indicates being out of the woods but we like good news. |
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Darn it. Back in for two more units tomorrow.
Keeps me going but it's not the solution. |
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Pam |
Re: Keep me in mind
we're thinking of you..
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What I forgot to finish there was a tremendous number of people locally, including my doctors, my wife's former doctors...and all our good friends, including some extremely kind people that patiently listened to me here in corfid for so long,,,,from not quite being able to type or think well in 2006 or so, to writing way too much and spelling and ...goll-dern it driving people nuts with the skills that returned to me after my own climbing and then car accidents, 9 surgeries now, and then all my wife's trouble before she passed, I hear ya man, I hear ya 10 years in total of non-stop unbelievable odds medical, with no common thread.....like a Job's test..... point is...... I can never fully appreciate what you are going thru without ambling 100 yards in your hospital slippers...but I have some sense... from listening to you... I think you're situation must be so hard... my offering is twofold - my daughter and I will pray for you and family..I'll ask my daughter to pray for your daughters strength to endure in there young lives as well... and 2.) Just let you know, that no matter how unbelievably hard it gets....the love, help, and good people out of nowhere...start gradually pouring into your life....are you on-line with your County services at Human Services ? I had Douglas County Government here- my employer - that waited ten years for me to be able to work....State of Colorado as well.... there will be phenomenally wonderful ppl in your life if not allready , if your experience is anything like mine; it sounds so much worse.,,... but they say each individuals pain and trouble is the worst in the world- because its happening to THEM... and their family... I learned that about my daughter after I was able to re-learn how to think again from head injury, I mean no detail on my situation, just concepts... it WILL get better, I've been told by SO many ppl that (religious or not) they have said - you know, you must have 9 lives, and somebody, something, somewhere, HAS TO HAVE A PURPOSE for you still being alive, there is a plan for you...hang in there and know it will become known at some time, maybe helping others as you say....after watching my father in Hospice, I've thought of becoming an ombudsman I think they are called, but in any event- visiting families hanging on by a thread medically, especially with children- who can't understand 'why their family"?. You bet you have our prayers my friend, and when I am on my feet again - 2 more things to get thru my way...and lots of talk....and for my daughter to...lots of talk...secondary victims they are called - the children, the wives, the husbands, but when it is both wife and husband, the children suffer so in a different way.... but I have watched it all make my daughter AN INCREDIBLY STRONG businesswoman... successful, determined, a climber.....hard worker...good ethics...kindness... after several years of bitter teenage-hood of why us ? It'll all come around you watch fezo, no one goes thru that much without there being a reason, no matter what you believe in ....intelligent design, whatever....there is a reason.. so hang on to these thoughts if they comfort you...because they are turning true in whats left of my family..... all I mean is I lost my wife....but U are the subject here..... you will make it....don't hesitate to "not be strong" all the time - us men are taught to be stoic, strong, not cry - thats hooey - we're human - so give yourself a break....and seriously - almost all but agricultural counties have a noteworthy Human Services Department, branches of State as well, and they have a wide range of Support, Money, advocates to talk too, (I'd have gone nuts without my advocates, of a few kinds)....SSDI, state disabled funds for ppl awaiting SSDI, etc, and the County I live in and have worked (off and on) so long for.. after another county and state and fed agencies that totalled 13 years before this gov agency I am in now....and they wait...and wait.. and don't give up...makes you feel like there is a reason...and there are good things waiting when you get better.. .OK I've talked your ear off, but your story touched my heart in hearing so many of the similar things - even help in total on meds over $4,000/month for free, well, with assistnce, after my insurance ranout of lifetime max benefit, and my car insurance medical (which I had at triple normal) exhausted too, but the help when I could not work at all...so many times off and on now at DOUGLAS....tells me there are still lots of good ppl in the world...and so many that care....the 1 in 50 that are special make up for the 49 that don't care.... forget them.... and hang in there...will be thinking of you and family, and as the others said - keep us informed....and I take it you listen to Lightfoot therapeutically as I have for so long ? Its amazing what that can do as well.... OK man hang tuff, and conversely, you don't HAVE to be strong... get that support network broad enouogh to spread out the stresses and ...things to solve and figure out every month....have ppl involved with you on that , if you don't mind my advice - its a little late for me to ask that....lol...take care and keep the faith.... 'geo" steve & daughter Mamie |
Re: Keep me in mind
put me down for a CD too fezo...details on buying ? likely next month.. :)
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Having been in contact with my fellow NJ resident,Steve, with a view to resurrecting his old website (which is actually archived at:-
http://fezo.notlong.com ) I am extremely upset to hear his news, and as a confirmed agnostic I will certainly keep my fingers crossed for him.We had hoped to meet at the recent Morristown NJ concert and at my prodding he had got great second row seats next to the two we had got for Susan's sister He was then unable to attend due to the onset of his illness and the treatment but fortunately his tix were gratefully bought by Bruna/silverheels, so she and her friend were at the last minute able to get great seats Steve had passed me a spare copy of his superb debut CD "Taking The Moon For A Walk" and after the concert as promised I passed it on to The Man himself together with a letter of explanation suggesting that he should listen to at least the title track with a view to solving his current lack of time and inclination to devote to writing new songs for another CD. I followed this up at a later concert to be told politely that he had a pile of (such) CDs a foot high to plough through but at least he appeared to remember my letter which I took to be a good sign although he did not actually admit to reading it!! Meanwhile I had made good quality mp3s of all ten tracks on Steve's CD and in another thread http://www.corfid.com/vbb/showthread.php?t=18581 I had given links to 4 of them as repeated here by JJ. As I had said in that thread I am trying to make time (not easy when in my retirement I find so many projects to do) to complete the job of recreating a fully functional version of Steve's original website using the details in that internet archive set as linked above. I also need to get Steve to revise his "bio" page as it was obviously written a long time ago. I did say in that thread that I had however created a spoof of such a revision which is at:- http://ww.fezo1.notlong.com/biotxt_revised.htm Sorry Steve I could not resist repeating that link, not having heard from you to tell me if you approved it or not I can now think of two recommendations for corfiddlers that should help him in his predicament
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Re: Keep me in mind
I'm praying all day most days. Be glad to include you. And I would request prayers and "good thoughts" for my Mom who passed away Monday after a long battle with Alzheimer's Disease. I know some people are a little uneasy with the thought of "prayers" and thats OK. I think good thoughts, etc. get translated after they leave your head. And even if you don't believe in anything - good thoughts and actions are all good, eh ?
Peace Be With You, Bill :) |
Re: Keep me in mind
Real sorry to hear about your Mom Bill. :( My sympathies to you and your family...
Thinking of you Fezo, healing thoughts up your way from Atlantic Canada... Hang in there and be strong. ~Jesse Joe~ |
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Thanks, folks!
Sir John - great! Of Course it was fine to post the alternate biography. Obviously I've had a lot of things slide as this has gone along. I really do expect to come out on the other side. When this all started the hematologist said to still count on a couple more decades and I'm still thinking that way. BTW - were you an atheist you couldn't pray. Agnostics are another story. You could pray and think you might be talking to yourself.... Bill - sorry to hear that woth your mom. We went through nine years of dementia with my mom and a long bout of Alzheimer's with my father-in-law. It's not easy and even under the circumstances the end isn't easy either. Oh - you can see my address and phone on that abck of teh CD. If you need an E-mail it's fezo@rocketmail.com Thanks, everyone. The suppor helps loads and I remain optimistic even while I'm muttering "hurry up already".... And I'm still hanging in at work.... |
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Bill - I'm sorry to hear about your mum..good thoughts are on their way from north of the border...
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many good thoughts on their way from the north, Bill & Fezo |
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Bill, I'm so sorry to hear about your Mom. Count me in for the positive thoughts and prayers. Hang in there.
Lisa |
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Count me in too.
Hey Fezo, I just got the CD and I'm playing it on my walkman right now. I'm on track 4. :headbang::):biggrin: |
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