YIKES! Anyone Have a BORG costume I can use?
19Oct13 8:47pm
Hey all my lovelies!
First, warning: this is a long email - sorry I should have done them separately earlier but I've been so darn sick! If you want more info about the pain surgeries, go to tamethepain.com.
Just wanted to update you on my ongoing health ickiness. I found a doctor (Dr. Kelly) who is going to perform a surgery to help control my pain. This is welcome news indeed! The trial surgery is neuromodulation and will be on Halloween, Oct 31st. Basically they put wires up your spinal cord and have a battery pack connected to the wires taped to your side. After several days, I should know if this method helps and the big surgery will commence. I'm not exactly sure if they'll use the same wires or put in new ones (I think they just keep them since it's such a big job to get them in! Dr. Kelly actually has to hand that part off to a neurosurgeon) but they'll def insert the battery pack into my body (butt or abdomen? I'm not sure but since my bottom is SO small, they may not be able to fit the pocket watch size device in there! haha).
I'm really nervous because I have to be awake during the procedure and since I'm already at my top threshold of pain, I'm hoping this won't leave me cursing them out like a sailor! I've heard doctors say sooo many times "Oh, you won't feel a thing!!" then I'm in agony for 8 years (taking about the initial doc who did this thing to me on Dec 13, 2005 at 1pm - not that I'm counting or anything!). Geez. There is some danger of paralysis or death, but from what I've read, that's pretty remote. Then again, the doc hitting my pancreas in 2005 was really remote and then me continuing to be sick was even more remote!! Like 0.27% or something - again, not like I'm keeping track or anything. Hopefully, my luck will swim with the norm this time, aye?
If this prelim neuromodulation doesn't work for me (about 80% find relief I think), then we can do a pain pump insertion. I call the neuro surgery THE BORG (and if you don't watch Start Trek TNG - quick!! Look up a pic of the Borg!) since I'll have wires trailing out of my spine. Yikes. I so wish I could afford a Borg costume! Wouldn't that be so funny to show up at the hospital for my IV then go down to the doc's in full BORG costume? It's on All Hallow's Eve after all! Maybe I'll bring a picture or something - altho I'm out of ink again. Sigh. Must find something!! It's just too funny not to.
I will say this past year has been the most painful year I've ever lived thro (physically speaking = altho I guess we don't have to qualify, huh?). I had to go back to the ER a week ago due to constant vomiting and being unable to eat or drink. Oh, and the PAIN was at a 9.9!! After a dozen tries over several hours, including my poor fingers, wrists, feet, groin, neck, arms - which are the easiest! - they couldn't get an IV in my veins. I could have (probably should have) been admitted but I was so worried about missing my appt with Dr. Kelly the following Wed, I didn't want to chance it since he only see patients once a week and they're booking into Dec already! So I came home and continue to dry out. Ick.
One new finding is they saw a hazziness in my small bowel mesentery, suggesting the presence of mesenteric panniculitis. This finding was more prominent than in the 2/26/2013 study (yes, I just typed off the paper!). My GP said it's the part that holds my intestines to my back to keep them from sliding around. I don't really understand yet - I've been too darn sick to read up yet (damn, when is Santa gonna get my letter for a laptop - or do they call Apple laptops something else? Ipad or something? I don't care - just wish I could lay down and get online! and write, read, do excel SS, etc.! Will have to send more letters this year :) haha). My GP was very firm that I should have a GENERAL surgeon (where does one find a good one anyways?) biopsy this mass ASAP (as in BEFORE my surgery on Oct 31st). Matt talked to his friend and said at this stage it's unlikely to be cancerous (please all the Gods and Goddess NOOOOOO!!). I've seen too many loved ones struggle with that evil disease and have absolutely NO interest in experiencing it firsthand! But then, who does, aye?
So we put a call into Dr. Kelly to see what he thinks: biopsy first or neuro first or both together? I'm very anxious that I'll lose my place in line for the neruo surgery and have to suffer longer! But, hey, it could be sooo much worse. I could be a MAN! Heehee - couldn't help it. Sorry guys.
Will update (with a MUCH shorter email) when we know more. I'm almost hoping they find something they can just remove and I can function again as a HUMAN BEING! I miss me so much. Oh, and all you guys and gals too, of course. Love you all and hope you're enjoying this beautiful fall weather! Take care, Robbin
Hey all my lovelies!
First, warning: this is a long email - sorry I should have done them separately earlier but I've been so darn sick! If you want more info about the pain surgeries, go to tamethepain.com.
Just wanted to update you on my ongoing health ickiness. I found a doctor (Dr. Kelly) who is going to perform a surgery to help control my pain. This is welcome news indeed! The trial surgery is neuromodulation and will be on Halloween, Oct 31st. Basically they put wires up your spinal cord and have a battery pack connected to the wires taped to your side. After several days, I should know if this method helps and the big surgery will commence. I'm not exactly sure if they'll use the same wires or put in new ones (I think they just keep them since it's such a big job to get them in! Dr. Kelly actually has to hand that part off to a neurosurgeon) but they'll def insert the battery pack into my body (butt or abdomen? I'm not sure but since my bottom is SO small, they may not be able to fit the pocket watch size device in there! haha).
I'm really nervous because I have to be awake during the procedure and since I'm already at my top threshold of pain, I'm hoping this won't leave me cursing them out like a sailor! I've heard doctors say sooo many times "Oh, you won't feel a thing!!" then I'm in agony for 8 years (taking about the initial doc who did this thing to me on Dec 13, 2005 at 1pm - not that I'm counting or anything!). Geez. There is some danger of paralysis or death, but from what I've read, that's pretty remote. Then again, the doc hitting my pancreas in 2005 was really remote and then me continuing to be sick was even more remote!! Like 0.27% or something - again, not like I'm keeping track or anything. Hopefully, my luck will swim with the norm this time, aye?
If this prelim neuromodulation doesn't work for me (about 80% find relief I think), then we can do a pain pump insertion. I call the neuro surgery THE BORG (and if you don't watch Start Trek TNG - quick!! Look up a pic of the Borg!) since I'll have wires trailing out of my spine. Yikes. I so wish I could afford a Borg costume! Wouldn't that be so funny to show up at the hospital for my IV then go down to the doc's in full BORG costume? It's on All Hallow's Eve after all! Maybe I'll bring a picture or something - altho I'm out of ink again. Sigh. Must find something!! It's just too funny not to.
I will say this past year has been the most painful year I've ever lived thro (physically speaking = altho I guess we don't have to qualify, huh?). I had to go back to the ER a week ago due to constant vomiting and being unable to eat or drink. Oh, and the PAIN was at a 9.9!! After a dozen tries over several hours, including my poor fingers, wrists, feet, groin, neck, arms - which are the easiest! - they couldn't get an IV in my veins. I could have (probably should have) been admitted but I was so worried about missing my appt with Dr. Kelly the following Wed, I didn't want to chance it since he only see patients once a week and they're booking into Dec already! So I came home and continue to dry out. Ick.
One new finding is they saw a hazziness in my small bowel mesentery, suggesting the presence of mesenteric panniculitis. This finding was more prominent than in the 2/26/2013 study (yes, I just typed off the paper!). My GP said it's the part that holds my intestines to my back to keep them from sliding around. I don't really understand yet - I've been too darn sick to read up yet (damn, when is Santa gonna get my letter for a laptop - or do they call Apple laptops something else? Ipad or something? I don't care - just wish I could lay down and get online! and write, read, do excel SS, etc.! Will have to send more letters this year :) haha). My GP was very firm that I should have a GENERAL surgeon (where does one find a good one anyways?) biopsy this mass ASAP (as in BEFORE my surgery on Oct 31st). Matt talked to his friend and said at this stage it's unlikely to be cancerous (please all the Gods and Goddess NOOOOOO!!). I've seen too many loved ones struggle with that evil disease and have absolutely NO interest in experiencing it firsthand! But then, who does, aye?
So we put a call into Dr. Kelly to see what he thinks: biopsy first or neuro first or both together? I'm very anxious that I'll lose my place in line for the neruo surgery and have to suffer longer! But, hey, it could be sooo much worse. I could be a MAN! Heehee - couldn't help it. Sorry guys.
Will update (with a MUCH shorter email) when we know more. I'm almost hoping they find something they can just remove and I can function again as a HUMAN BEING! I miss me so much. Oh, and all you guys and gals too, of course. Love you all and hope you're enjoying this beautiful fall weather! Take care, Robbin
Replies
OMG lady, you sure have your plate full. Guess you better take your Trick or Treat bag to the hospital with you too. hehehe...Maybe they can fill it up with pain pills, or maybe in your case some new veins...
Will pray this actually works for you. You have been through soooooo much this past year.
If this were any of the men I know they would have put their head in a oven and turned the gas on a long time ago..My husband gets a paper cut and thinks he\'s dying. Once he had a boil on his butt and had it lanced he stayed in bed for three days, one would have thought he had major surgery..If he gets a cold he tells me all day long, I can\'t breathe, my head hurts, my nose is stuffy..Every 10 seconds it\'s something new..Makes me want him to see how it is to feel my pain just for one hour, especially like this past week...when it felt like every bone in my body was broken.
Sorry about that outburst..I send you tons of HAPPY THOUGHTS and will light a candle for you on Oct 31 for your surgery. I know everything will go well.
Big HUGS
Cheryl
Wow, Cherly is right. You have a plate full. I too will keep you in my prayers. Best Wishes . You have suffered enough. This will work,
Cherly; I glad I\'m not most men. My last 2 kidney stones I passed on a Sunday. Never told my wife, Just brought them out and showed her. I told I didn\'t want to bother her. I agree most men are wimps when it comes to pain. I was told in the Marines , \"Pain is weakness leaving the body\". Robin you are one tough girl. Hugs Brian
Brian is right, MOST MEN are wimps, I think the guys on the forum are the exception..Any one who goes through what they go through on a daily basis are not wimps.. I apologize to the the guys on the forum...you are not wimps..
Cheryl
Hi Nibs. Good luck with the wiring job. Shouldn\'t an electrician be doing the surgery? Hopefully, and I am saying a prayer, it will work well and you get some of the weight of the world off of your shoulders. That is how pain feels to me. When it comes to pain, I am a pain wimp. After a while, I got used to it. The only pain I truly can\'t stand is when they feel as though they absolutely must stick an IV in my freakin\' hand! My arms are 3 feet long! Why does dey gotta stick it in my freakin\' hand for? Anyhow, may God be with you during surgery. I agree that it will be tough being awake for it. The sleeping part was always my favorite part of surgery. Please let us know ASAP how things went. Chris...
Hey all,
Ta for your well wishes! I\'ll try to chat \"PAIN IS WEAKNESS LEAVING THE BODY\" during this scary time! I love that for sure. And I agree, MOST men I know are wimps but there are some lovely exceptions. I used to LIKE being the exception! How ironic now I pray to be normal, aye?
And Cheryl, hey lady, let it loose any time you want to! I get it and it actually makes me feel like less of a freak to know others go thro the same thing!
Had an argument with hubby last night. I finally understand why we argue all the time now. His greatest wish, no NEED, is for all this medical crap to GO AWAY! He tells me to \"get over it already\". And boy, don\'t I wish I could! My greatest NEED is to have someone just listen for a little while, try to understand this black hole my life has become. Just for 5 minutes if that\'s all he has.
In summary? Our NEEDS are totally opposite. I wonder how many others have this same basic conflict. I do hate it when he says things like \"haven\'t you already talked about that?\" and \"Get over it!\" because the IT is ME! I can\'t get away from my own body - I don\'t have that choice.
And several people in my \'family\' have said they don\'t have the LUXURY to stay home in bed every day. HUH??? What do you even say to that? That I wish I had the LUXURY of not crying inside with pain every second? That I had the LUXURY of eating solid or liquid food? That I had the LUXURY of taking a walk, going to the store, etc?? How can they think this HELL is a LUXURY??? I\'m stumped. What would you all say?
Love ya always! Please feel free to tap me back when you need to. I will apologize if I\'m not prompt but it\'s been really hard to even sit up for a few emails! But I\'ll get back to you - I promise. Take care, Nibs
Hi Lady, I am excited for you...
Know what you mean, I have two sisters and a brother, haven\'t seen my brother in over 5 years. Was supposed to AZ for my mom 80th birthday in August, but as you know I spent 3 weeks in the hospital fighting for my life. My younger sister I talk to her a couple times a year, but she just doesn\'t understand either.
I posted on FB that I needed some sister time and my younger sister thought meeting somewhere & going to a casino would be fun..Yes it would be fun, but what part of IMMUNE COMPROMISED does she not understand. I go to the store in the early morning, don\'t go where there are lot\'s of people, (over 10 people in a room) wipe off carts, don\'t touch door handles etc..I get human antibodies once a month, and I can\'t use public restrooms...(and you know how many times I can end up using the restroom) She has no idea what it\'s like to be on TPN and only be able to eat certain foods...Or not able to eat at all for months at at time..And she tells me the same thing, How lucky I get to stay home..
My response to people is no you\'re the lucky one, you have the LUXURY of going to work and being around people. You have the LUXURY of traveling and eating in nice restaurants. Then I explain my LUXURY they are so envious of, like having tubes hanging out of my chest, not being able to go anywhere unless I wear a mask, then I tell them about my wonderful diet, or how great it is having to stand and get washed, because you can\'t take a shower and get the port wet, or how I wash what hair I have left at the kitchen sink, since I have now lost about 1/2 my hair..Then I say so you think fun to just stay home? Want to trade lives?
Most people will just say something like, well you don\'t look sick...And I respond my saying, Thank you, I try hard, not to look sick...
Hope that helps Robbin..
Your Friend,
Cheryl