Scheduled for Surgery, But still get the same old comments.....

I have my surgery date,  I get my colonoscopy done Friday November 12th and Monday November 15th I will have a Posterior Articular Joint fusion at C-3/4, there is a possibility that the surgeon might also have to fuse the articular joints of C-4/5 if the bone is not viable to hold the screws for the brackets.

 

  I have had problems with retaining fluids and thus swelling and shortness of breath, they are still not sure what is causing it but they say it is not my heart or my lungs or my aorta,  I have been put on initial low dose Lasix with supplemental Potassium to try and get the fluid off. I keep my fingers crossed that it will work!

 

 Anyway  I have arranged to have one of my fellow K od C members to take me and bring me home from my colonoscoy on  that Friday.( I find that so difficult to have to ask for help like that!)  Anyway I have been trying to arrange to have some one take me to the hospital on that Monday and try to have some one available to be able to take me home when ever I am released, I have been told I could be in there for two or three days or longer. The surgeon has told me the surgery is relatively simple but the recovery is longer and more difficult than that of a anterior disk fusion! Mainly because they have to cut through all the muscle in the back of the neck.  Anyway while at church today I was talking to some to the men who are fellow K of C members, about helping me out with giving me a ride and all. As most of you know I am recently divorced and I live 40 miles or so from my doctors and the hospitals, and I have no family or anybody that I am close to that lives any where close to me, that I can go to for this type of support. Well while talking with some of these guys after mass one of them asked me why I was having the surgery, and I explained it all, and all the problems I have been having, and he say's the stereo typical comment,  "well the reason I was asking because your here at church and ......well you look like you seem to  be doing OK  to me  and you don't look like your in  any great, or huge amount of pain  or anything!"  I still find that so hard to respond to,  What exactly does a person  suppose to look like when they are in pain? How exactly are you suppose to act when your are in pain?  Are you not suppose to go to church? I mean, it somewhat irritates me when I hear this from someone, and I have , like many of you I am sure, have heard this type of thing many, many, many, times before. But as many times as I have heard it, it still confounds me, and I honestly just do not know exactly how to respond. Today I said that it was because of the heavy duty pain meds I was on, was the reason I did not appear to have any pain. Which is true I guess, but often I am in pain but I try my best not to show it , and I sure don't go around and broad cast it  to everyone anyway!  I know we have talked about this topic many times before on this forum, Fatherjohn posted about  this too.  But just how do all of you feel and deal when your,  friends, family, or even loved ones or  who ever,  say to you that  classic line....... " But you don't look like your in pain!!!"

 

Thanks for listening to my ramblings.

 

P.S. I still have to get some type of arrangement made,  I also will have to find out about what if any care I will need after I go home.

 

White Beard

WhiteBeard,

First off, we will be thinking about you and sending healing thoughts and hugs your way for the surgery!

I completely understand what you are saying and also am very tired of it! I have had my lower back problems for over 3 years now. It always hurt but I did have good days and bad days....I did go do quite a bit on the good days....which led to bad days! However, now with, what I am pretty sure is RA, (seeing the rheumy next Tuesday) I have gone down hill really fast and all my old "friends" just don't understand why I am not "Good Time Charlene" anymore! They see me at the grocery store and ask how I am....because I am tired of complaining and whining....my answer most the time is "I am all-right".....then they will ask me to come over later for a drink...my usual answer is "maybe, let's see how I feel" So when I don't go, they get mad, because I was able to go to the store and I said I was all-right! My husband finally told them that they have no clue how bad I am right now! That it takes all I have to get to the grocery store and that it is not that I don't want to see them....because I cry when I can't do things...it is because I CAN'T! It is a tough thing to answer when they say stuff like that! Maybe when they say "But you don't look like you are in pain" we should just say "Thank You" and walk away! Anyway enough ranting!

And Pete, I can relate to what you are saying too. My niece goes to school with a girl who keeps trying to talk her into stealing mine and her mom's pills. Fortunately, my niece has a good head on her shoulders and basically tells this girl "where to go"!

WhiteBeard, I am sorry about your situation and wish there was some way I could help! Take care of you!!

Hugs,
Beckey

    Dear White beard (Mr. Clause!)

     I am so glad to hear you will finally be getting the surgery. I know you have been in a large amount of pain for quite some time now and I am relieved you will finally get it done! I do hope the lasik is able to get the excess water out. I can imagine the extra pressure from the swelling is only making matters worse!

     Okay. I am with you on the "you don't look sick". I have often pondered this same statements many time. Well, not so much recently because it is easy to "see" on me now. But, before, I would always think ..."Why can't someone say 'You are pressing on despite the pain and It must take so much strength' or 'I really appreciate you working so hard to be here. Thank you for coming to see us despite the incredible amount of pain you are in'  you . Something, anything, that shows the understanding of someone working so hard to push through the pain to try to maintain daily life. *sigh* I know, I know, few and far between.  Still, it would be nice if it happened that way.

     I sure hope you are able to find a ride to the hospital.  Do you have "Medi-Cab" service out there? We have a really unique program called "Medi-Cab". You call the day before (or sooner) to let them know of your appointment times for before and after. The pick you up and drop you off a half an hour early and pick you up a half hour later than your appointment time. It is all paid for by the state. Frankly just between he two of us I am glad to pay taxes toward medi-cab than "saf-ride" (free cab ride for intoxicated individuals) any day of the week. Anyway, it is a really neat service. Even if you do not live in a major city. The will come, pick you up. But, like I said earlier, you have to call well in advance.

   Enough rambling on! I sure hope you can get a break from the swelling. Rest if/when you can. You are in our prayers here.

*hugg*
  dani

White Beard,

When I get comments like that, I tend to reply with exactly that comment - Them: "You don't look like you're in pain". Me: "Really? Could you demonstrate exactly how I'm supposed to look?"

Generally, the other person starts making excuses: "oh, I didn't mean it like that" or "Well, I just mean you don't look ill, or sore". And I usually respond back with: "Everybody manages their pain and their conditions differently. When I'm out in public, I try to look my best, like anyone else would. Comments like yours are extremely unhelpful, because you have no way of knowing how I feel."

It's never easy and I have to work hard at not getting snarky with people because of the constant questions. Often times, I just say "well, my makeup must be working then" and leave it at that.

Good luck with your surgery on the 15th. I'll be praying for you.

Hugs,
Pam

Post Edited (MsBunky) : 11/1/2010 9:52:38 AM (GMT-6)

If you ever get those types of comments at church a really good come back would be something like: "At this point I need all the help I can get and God is that last person I need to turn my back on" or "You know the poem "Footprints in the sand"? Well if Jesus was not carrying me right now I would never have made it".

WhiteBeard its always really hard to put up with the insensitivity of the idiots that surround us. When people hear I have RA they usually tell me about their sore finger! People just have no idea about chronic pain unless they're suffering it or live with someone who is.
I wish I could help too, it amazes me the amount of people on this site who seem unsupported. I really feel for you, facing surgery with no help afterwards is daunting. Especially if they're slicing through muscles, that doesn't sound good, as you really can't do much while they're knitting back together, certainly dressing and showering may be a problem. Is there some sort of voluntry help program around. Here in Australia, various church missions run home help programs. Is there something similar around you?
My heart is with you WB, I'll be sending you all my healing energies, golitho

Thank-You all for all your replieds!!!  Well my fellow K of C member that is taking me to the hospital for the colonoscopy on friday the 12th called me up tonight, and  confirmed the time, and then asked me about Monday and the surgery, I told him I didn't have a arrival time for the surgery yet, and he told me that he would also take me to the hospital,. and then to call him when I get released and he would come and get me too!  He also lives out in my area, he is retired, any way I was really thank-full about him asking,  he is super active in the church and always helping somebody!   So it looks like I have that taken care of now.

 

Hey Pete I totally agree with you about not letting people know about the meds you are taking! I am really careful about that too!  I will say one person that really understands about the pain, we just got a new parish priest in, he is an older gentleman actually he was retired, and the church asked him to come out of retirement and come and be the pastor at our small rural parish. He agreed, but he is in bad shape, as he has had several spinal fusions and he just went in for more epidurals last week, we often talk, as he know about back and spinal pain!  Things are getting bad when they start having to pull the priest back out of retirement, even the ones on disability.  

 

I don't know some times concerning the pain issues, I just think it would be best if people would just not say anything, we have a very small parish, heck I live in a very small rural area, and everyone knows about everyone. They all know that I am on disability, and  all that, I guess I just get a little tired of hearing some of the comments like that.

 

golitho I am not at all sure what the requirements are going to be after the surgery, that is something I will be finding out in the coming days,  whether I will have to have a home health care nurse come in and help me or what???   As I had mentioned before, I had made the mistake as allot of us suffering with chronic pain do, of isolating my self, and you must rember I have been on disability and suffering from chronic pain for a long time before coming to this forum,  I was finally granted SSD in early Feb of 2002 and it took me over two years to get it. So I have had a long time to shut myself off from people. And that was a huge mistake on my part, I let my friends go by the way side, because I could nolonger do allot of the things  with them that I use to, and I spent allot of time at home in my recliner in pain. It took a long time before I ever seen a Pain Doctor and finally was being treated properly for my pain!  Anyway I have no family that is anywhere close,  and as I isolated myself I kind of made my wifes friends and her family my friends and family. Which was fine, for a long time, but then the divorce, and well then all of it went away!  And I found myself in a not so good of a spot,  I take full responsibiliity for that, as it is my own fault, and we have talked about this subject at length in several threads last year that was started by fatherjohn.  Anyway now the divorce is over and done with, and since the house is not sold I am still stuck here,  it makes it difficult when something like this surgery comes up. 

 

Chart I wish my daughters lived closer, but both of them lives close to five hundred miles away, my oldest daughter is the one who has not talked to me since we told them about the divorce.  Anyway it is a touchy subject, after all I am the one that filed and up set the apple cart!   Once the house sells , I can move out and I will hopefully leave this area, and can be closer to friends and or maybe family???

 

Anyway I do want to again Thank-you all for your concern and support, I really do appreciate it!  You have all been there for me in some pretty difficult times,  the disk fusion that I had in Sept of 09 and then all the support through the long and drawn divorce, and now this new and different surgery for me  on the back of my neck.!   Will it never end?........It does seem like the last year and a half has been just one thing after another! And you have all helped me and been there for me through it all!!!   Is it any wonder why I consider you all my family????  I am not sure what I would have done with out all of you!

 

I will write more later and try to address each of you, But please do accept my thanks right now! 

I do wish you all the best!

 

White Beard