Update and THANK YOU ALL!
Hey all my loved ones! I know a lot of you all have been asking for updates so here goes. And if you’re not? Well, tough, close your eyes J. Just kiddin. You can just pretend to read and say GOOD LUCK or something. I know, I’m fresh (reminds me of the orc in LOTR that says “What about him? He’s freeesssshhhh!” Chortle
The first surgery on 10/31 was a test for the neuromodulation. And since I had to be awake AND had a really horrible Charlie horse in my right side – as in it felt like it was breaking my ribs!! - it HURT. And it didn't work on the right side AT ALL (which sucks since that’s where I really hurt!). Yet another abnormal medical mystery - just wish I wasn't in it! You know how you always want to be exceptional and special? NOT ME!! At least not medically - I'm sick of being the exception! I want to be nice and normal and BORING J.
The next surgery was a trial for the pain pump on Nov 20/21. It required me to be awake again, yeah. Have you ever had a spinal tap? Well, it's like that but with a bigger needle. They withdraw spinal fluid, mix it with morphine (only a tiny bit compared to all the narcotics I'm on now!), then put the mixture back in the spine. I was at the hospital 2 days (the 2nd was my 46th!! bday!!). And THAT trial was a success! Hip hip hooray! Mere minutes after they put the mixture back in my spine, Matt asked me how I felt. He said I just looked really confused! Because I honestly couldn't remember the last time I felt that good. Probably 6-7 years ago! Sadly, the feeling only lasted until I ate (at their insistence) about 4 hours later, then it started to fade. All the vomiting probably made my pancreas even angrier. But it WORKED!!
So my NEXT BIG SCARY surgery is on Dec 11th but I go in twice for preop stuff (this past Mon (12/4 - which just misses Matt's Bday 12/6 - tomorrow!), then this Mon(12/9), then wed (12/11) is the surgery. The surgery starts at noon and will be an hour or two and I'll be blessed ASLEEP this time. Sigh = happy for that! And I'll be in the hospital for a few days at least and it will be a much longer recovery time (months and much rehab).
Altho I’m excited for the pain relief and the thought of being a HUMAN again!!, I'm really anxious cause the device is SOOO much bigger than Matt and I remember being shown this summer. It's about the size & weight of one of those metal measuring tapes; bigger than my palm at almost 4 inches and wider than my hand at about 1.5 inches. AND HEAVY!!! It's like 4 pounds. He'll put it in my side between my hip and ribs. And he says I have very little flesh there or space (which made me happy to think I'm thin in some way!!) so if I move wrong, the metal will hit my ribs and hurt like a bugger. And you have to get it refilled every 4-6 months. I'm really, really, really a little bit sheeeetless (can you be only a little bit of that?)!
And I so, so, so wish I had some family and/or friends here to help. It was an incredible comfort to have my mom down those 3 weeks for the first test. But now I’m just here alone since Matt works a lot. Guess I’ll have to tape the phone to me since I can’t always reach it… I can do this because I can’t take my beloved baths for 10 DAYS. Sigh. A small price to pay (once it’s done! J).
Another benefit I’m anxiously awaiting is that I’m quite eager to take more of the weight off Matt (this NOT being in any way what YOU’RE thinking _ haha ;). You gotta laugh, huh? It will be so lovely to clean, go to the dump, go grocery shopping, errands, etc. And CRAFTING!! And art. Walks with my wonderful Wynny J. I know some of you probably think I’m cra cra (and I probably am!) but I love to clean and have a nice clean house. Right now, it’s a disaster zone – really. I have to make pathways thro all my boxes from my office (think almost 30 years worth of files and books and such!). Send the cleaning troops in!
But, as Matt's doctor colleagues say, it's a no-brainer at this point. It's this or continuing to suffer. One thing we’re both bummed about is that after 8 years and all my surgeries and tests and dozens of hospital stays (usually between 1-3 weeks) they STILL can't pinpoint what's wrong other than I have pancreatitis (and liver and kidney infections and kidney stones).
So as grateful as I am for this relief (and I am VERY grateful!), I'm nervous they're still not treating the underlying problem. I mean, what's up with that? It's been EIGHT years now. And I've lost so much - my job, most of my family and friends, any chance at having children, my teeth, money and so much more (the kids and family hurt the most tho). Such a high price to pay for a doctor's mistake that he's not even liable for... I just don't get the justice in that at all, ya know? Isn’t that why they have insurance? Oh well, life goes on, aye?
OK enough of the sad blab! Gotta get back on track and look for the good in all things. I will continue to try my hardest to love life and those people who are so very wonderful to me (thro thick and thin, in sickness and in health – Geez! Sounds like I married more than my beloved Matt! guffaw). I do really believe a positive attitude is priceless and I strive to emulate some of my very dear friends who are also battling their own challenges. Thank you all on Daily Strength! You’ve been such a blessing for me, I wish I had the words to tell you all how you’ve helped me during these lonely years (ok, I typed loony yars first and I’m thinking maybe that fits better? Chuckle, snort).
Sorry to take so long to post an update (my mom was here for 3 weeks to help and I haven't seen her in 2 YEARS!!!) and I've also been pretty bedridden. With the next BIG surgery, I'll be more handicapped for longer until it all heals (months at least). But I promise to try to post when I can! Oh, the world for a laptop!! We only have a desktop and it hurts too much to sit for long. And I don't even have a fancy phone that does anything but call numbers (hey - it's only $99/YEAR at AT&T!). So I'm pretty cut off. Wish I knew someone I could trust that would sell their old laptop! I need like a millionaire to see this and donate one (hear me rich ones?? Snicker hoot).
Ooops, Wyn is barking. Matt says she can only bark at space aliens, dinosaurs or people. I'm thinking dino's... TTFN and TA! Luv, Nibs :)
The first surgery on 10/31 was a test for the neuromodulation. And since I had to be awake AND had a really horrible Charlie horse in my right side – as in it felt like it was breaking my ribs!! - it HURT. And it didn't work on the right side AT ALL (which sucks since that’s where I really hurt!). Yet another abnormal medical mystery - just wish I wasn't in it! You know how you always want to be exceptional and special? NOT ME!! At least not medically - I'm sick of being the exception! I want to be nice and normal and BORING J.
The next surgery was a trial for the pain pump on Nov 20/21. It required me to be awake again, yeah. Have you ever had a spinal tap? Well, it's like that but with a bigger needle. They withdraw spinal fluid, mix it with morphine (only a tiny bit compared to all the narcotics I'm on now!), then put the mixture back in the spine. I was at the hospital 2 days (the 2nd was my 46th!! bday!!). And THAT trial was a success! Hip hip hooray! Mere minutes after they put the mixture back in my spine, Matt asked me how I felt. He said I just looked really confused! Because I honestly couldn't remember the last time I felt that good. Probably 6-7 years ago! Sadly, the feeling only lasted until I ate (at their insistence) about 4 hours later, then it started to fade. All the vomiting probably made my pancreas even angrier. But it WORKED!!
So my NEXT BIG SCARY surgery is on Dec 11th but I go in twice for preop stuff (this past Mon (12/4 - which just misses Matt's Bday 12/6 - tomorrow!), then this Mon(12/9), then wed (12/11) is the surgery. The surgery starts at noon and will be an hour or two and I'll be blessed ASLEEP this time. Sigh = happy for that! And I'll be in the hospital for a few days at least and it will be a much longer recovery time (months and much rehab).
Altho I’m excited for the pain relief and the thought of being a HUMAN again!!, I'm really anxious cause the device is SOOO much bigger than Matt and I remember being shown this summer. It's about the size & weight of one of those metal measuring tapes; bigger than my palm at almost 4 inches and wider than my hand at about 1.5 inches. AND HEAVY!!! It's like 4 pounds. He'll put it in my side between my hip and ribs. And he says I have very little flesh there or space (which made me happy to think I'm thin in some way!!) so if I move wrong, the metal will hit my ribs and hurt like a bugger. And you have to get it refilled every 4-6 months. I'm really, really, really a little bit sheeeetless (can you be only a little bit of that?)!
And I so, so, so wish I had some family and/or friends here to help. It was an incredible comfort to have my mom down those 3 weeks for the first test. But now I’m just here alone since Matt works a lot. Guess I’ll have to tape the phone to me since I can’t always reach it… I can do this because I can’t take my beloved baths for 10 DAYS. Sigh. A small price to pay (once it’s done! J).
Another benefit I’m anxiously awaiting is that I’m quite eager to take more of the weight off Matt (this NOT being in any way what YOU’RE thinking _ haha ;). You gotta laugh, huh? It will be so lovely to clean, go to the dump, go grocery shopping, errands, etc. And CRAFTING!! And art. Walks with my wonderful Wynny J. I know some of you probably think I’m cra cra (and I probably am!) but I love to clean and have a nice clean house. Right now, it’s a disaster zone – really. I have to make pathways thro all my boxes from my office (think almost 30 years worth of files and books and such!). Send the cleaning troops in!
But, as Matt's doctor colleagues say, it's a no-brainer at this point. It's this or continuing to suffer. One thing we’re both bummed about is that after 8 years and all my surgeries and tests and dozens of hospital stays (usually between 1-3 weeks) they STILL can't pinpoint what's wrong other than I have pancreatitis (and liver and kidney infections and kidney stones).
So as grateful as I am for this relief (and I am VERY grateful!), I'm nervous they're still not treating the underlying problem. I mean, what's up with that? It's been EIGHT years now. And I've lost so much - my job, most of my family and friends, any chance at having children, my teeth, money and so much more (the kids and family hurt the most tho). Such a high price to pay for a doctor's mistake that he's not even liable for... I just don't get the justice in that at all, ya know? Isn’t that why they have insurance? Oh well, life goes on, aye?
OK enough of the sad blab! Gotta get back on track and look for the good in all things. I will continue to try my hardest to love life and those people who are so very wonderful to me (thro thick and thin, in sickness and in health – Geez! Sounds like I married more than my beloved Matt! guffaw). I do really believe a positive attitude is priceless and I strive to emulate some of my very dear friends who are also battling their own challenges. Thank you all on Daily Strength! You’ve been such a blessing for me, I wish I had the words to tell you all how you’ve helped me during these lonely years (ok, I typed loony yars first and I’m thinking maybe that fits better? Chuckle, snort).
Sorry to take so long to post an update (my mom was here for 3 weeks to help and I haven't seen her in 2 YEARS!!!) and I've also been pretty bedridden. With the next BIG surgery, I'll be more handicapped for longer until it all heals (months at least). But I promise to try to post when I can! Oh, the world for a laptop!! We only have a desktop and it hurts too much to sit for long. And I don't even have a fancy phone that does anything but call numbers (hey - it's only $99/YEAR at AT&T!). So I'm pretty cut off. Wish I knew someone I could trust that would sell their old laptop! I need like a millionaire to see this and donate one (hear me rich ones?? Snicker hoot).
Ooops, Wyn is barking. Matt says she can only bark at space aliens, dinosaurs or people. I'm thinking dino's... TTFN and TA! Luv, Nibs :)
Replies
A couple more days and then you will be on the road to recovery..Yes Robbin there is a Santa Claus & he is bringing you a pain pump..Cheesy I know, but I have been watching all those cheesy Christmas movies on the Hallmark channel today...
Don\'t forget to get your handicap parking if you don\'t already have it. It will really help you. Also stay away from people with colds & the flu since your immune system will be more compromised from the surgery. We have people was their hands as soon as they come into our home..You might want to to the same for awhile, or at least have them use hand sanitizers..
Glad you have your Wyn...I have my Jake & he takes good care of me..Got to love our 4 legged kids..
HUGS
Cheryl
2014 will be a good year! You should be pain free and feeling human again. :-) Cheryl that\'s good advice. I would of never thought of those things. And yes the four legged kids are the best! Hugs Brian
I tots agree with Brian and you, Cheryl! I think they should allow me to have my 86 lb baby there with me, but I\'d worry about her little feet (nasty hospital floors and such). So, I gotta ask, do you obsess about the germs too? I\'m always washing my hands, using the antihand thing on my hands (and FEET!). Can\'t use the restroom without putting on my gear, then taking it off before getting back into bed. I see some people just walking around in socks and them getting into bed with them! Eeek. Or am I just a germ phobe? Love yas and I\'m really wanting to be at LEAST almost human in 2014 (get it? there\'s a new show on tv called Almost Human and it\'s good!).
Hey girl, glad your finally gettin your pump! A couple of cautionary notes they probably haven\'t mentioned yet, but you need to know, first it will probably take some time to get your dose correct in the pump, also there are some other medications besides the morphine that work well using the pump, mine is a mix of bupificaine and morphine. The bupificaine is a numbing agent and works well to numb the nerves that cause the pain. Secondly I don\'t know how your doc feels about pain meds, but mine cut me off completely from all oral pain meds as soon as I got my pump, says they interfere with the whole process of the pump. Now as to recovery, yep its gonna take you awhile, and hopefully your doc will be kinder than mine and give you some post surgical pain meds cause the pump didn\'t touch my surgical pain, but he still wouldn\'t give me anything for that pain, so I just suffered, still in the long run the pump is well worth it and I will pray your as happy with yours as I am with mine! ttyl
Hey Mr. T! Ta for the pointers. My pain Dr. Kelly is great. He\'s giving me plenty of oral meds during the adjustment and for breakthro pain. I\'ll have to ask about the surgical pain. So glad for YOU that you\'d done with this!
It\'s funny but for the first time in forever, someone inferred I was THIN! I\'m a solid 220lb now (I acutally gained about 50lb when I got sick and STOPPED eating - how is that right!?) and I\'m tall with almost all my weight in the J Lo area :)> = I\'m finally IN STYLE.
One thing I\"m worried about is that Dr. K said I don\'t have much room or flesh (or fat) on my side between my ribs and my hip bone. He\'s concerned the pump will barely fit there and hit me in my ribs. Have you found this true? I\'m getting the larger pump (but it\'s just wider, not smaller on the face) so I can use meds as needed and not have to go in every week! Any tips on that? Does it bulge out of your skin? I\'ve gotta think Bikini after all :)
Ooook, now don\'t take this the wrong way, but bikini at a solid 220lbs? I didn\'t misread that did I? I am so glad for you that you\'ve got such an intelligent pain management doc. Mine seems to just run on half baked ideas, and don\'t listen when I try to get him to do something different. He is now on a kick to switch me over from narcotics to a medicine made from snail snot of all things, checked on the stuff and as well as being the most expensive pain med in the world, it don\'t work for most folks and my refill nurse told me she has had to take two of her other patients off the stuff and get them emergency narcotic refills, and she said he shouldn\'t even be thinking about this with all the meds you haven\'t even had yet. My refill nurse is a no nonsense gal who doesn\'t take crap off anyone including the docs she deals with, lol, I get a kick out of listening to her talk to some of the docs in our network around here, it\'s funny at times. Now I know you said your getting the surgery on the 11th so just make sure and get as much rest as possible before then. I\'m here for you kiddo anytime you need me just gimme a shout, e-mail is tj4754x5@att.net just in case you need to chat away from the group. Keep me posted girl...
HeY! That\'s a MERE 220lbs to you boyo! I\'m over seven feet tall after all :)>. I actually have a really small waist like Betty Boop. I think you got distracted by bikini envy Heehee...
So I\'ll just paste this here and ask you for your wisdom! He\'s concerned the pump will barely fit there and hit me in my ribs. Have you found this true? I\'m getting the larger pump (but it\'s just wider, not smaller on the face) so I can use meds as needed and not have to go in every week! Any tips on that? Does it bulge out of your skin? I\'ve gotta think Bikini after all :)
Well a couple of things, yes the pump does bulge out, but not so much as you might think if it is tied down properly, which mine wasn\'t on the top so mine bulges out quite a bit at the top and I have the 40ml pump myself(the big one)they rarely use the smaller one these days for the very reason you sited, longer turn around on the refill times. Mine is far enough down below my ribs that its a truly rare thing to have it bump my ribs, but it has happened so dunno that there is a way to avoid that issue. I had plenty of belly fat at the time of my surgery so he was able to just carve out a pocket and tack it down inside the pocket, however as I said its a lot looser at the top so bulges and at an angle none the less! Make sure when they program your pump that you have the ability to bolus and try for a half dozen per 24 hours initially as your probably going to need that many until you stabilize at a specific continuous dose and then you can probably back off the high number of bolus\' a day, but make sure they program them in your program as it is so much easier to have them and not need them than the other way around. You know I would never have guessed you for a 7 footer, wow I bet with a betty boop waist and that tall your quite the head turner, maybe I should have been askin for pics of you all along, hee hee hee