OW! Revisited

[devon]

Hey ya'll! Just an update. 

I had the A/V fistula last week and finally after a full week, the pain became tolerable.  I don't know what the surgeon used ---- a dull butter knife, perhaps --- but I finally went a day without pain meds on Saturday, a week after the surgery.  Today, I returned to work full-time. Fortunately, I was able to login remotely and work with frequent breaks for most of last week and the work load wasn't much.

Thanks again ya'll for the encouragement and inspiration.  IHD is a great place to come to and find people who truly understand what I'm going through!

 

a Little rant though... As I talk to others about my surgery and the pending dialysis, one comment I hear often is "You look so healthy!".  "Thanks," is my usual reply but inside I'm thinking... "Jesus! Can't you understand!? I'm in constant discomfort! I don't remember what HEALTHY is because it's been since about 1985 that I last felt "good"!!!  The fact that I'm not vomiting in your lap is more amazing to me than anything else!  Dragging myself out of bed every morning in the crowning achievement of my day!  The fact that I 'look' healthy is really irrelevant! Would you like me to look 'sick'?!

Other than that, I'm fine, thank you!

Love to ya'll! I know you'll understand what I'm going through!

-Devon

[KT0930]

Glad to hear the pain has subsided and you've been able to return to work!

As for the "You look so healthy" comment, I got that for the entire 18 months I was on dialysis, and it drove me NUTS! I learned that most people would not or could not listen to the "but I'm really not, and neither are the other 300,000 people on dialysis in this country" speech, so I gave up on that, simply said thanks and came here to rant. 

[Slywalker]

Devon - glad you are better.

Someone posted a poem here a short while ago about "do not assume" and it was so great I printed it and hung it in my office.  The problem about kidney failure and dialysis  is you "look so healthy" that I guess there is nothing wrong.  Well, here people understand the tiredness and the icky feeling and general malaise that happens. 

Hang in there Devon.

 

Sandyb

[kellyt]

How about this answer...

"You don't look sick".

"Thank goodness, cause I feel like shit".

       uh... I mean...   

[boxman55]

Devon, I get that too. I am to the point where I just blow it off. You can't win if you argue it....Boxman

[Sluff]

Glad your doing better Devon...hang in there. 

[ODAT]

Hey Devon, glad the pain finally subsided. Not looking ill is one thing that I notice about my mom. But, I know better. I can't let that fool me and neither can she. When the doctor says "It's time" I pray she goes along. I ask her all the time how she is feeling. She says she's not as tired during the day (since she switched to taking Lycria at night), and she does get full a lot faster.

My friend's husband is a trucker and he loves it!

[devon]

Thanks again and again for the encouragement.  The rant made me feel better.  It's nice to know there's a place I can retreat to where people understand my situation.   

Being a single parent is tough because my kid really doesn't get it but I don't pressure him as perhaps I should.  He expects that I will cook dinner after coming home from a day's work, stopping at the store for necessary items, fighting traffic, going to the lab for yet more blood (what EVER do they do with all that blood?), doing the laundry, etc. 

He's starting to do some things for himself and that's good.  He cooked his own dinner last night sparing me from that and I was thankful.  I'm on a liquid Opti-Fast diet getting prepared for my next surgery this week so I don't eat anything. I just sip from a box! 

And we go on and on, one day to the next.

At least I have my one pleasure, playing World of Warcraft.  Last night I helped a couple of kids of a friend of mine in some of their "quests" (tasks and adventures to gain experience and progress up through the ranks).  It was delightful and distracting to "play".  I was helping them but they didn't know how much they were helping me! 

-Devon

[Deanne]

I'm glad you're doing better Devon!

I'm thinking about creating a new line of make-up. I don't wear make-up myself, but maybe I'd wear this kind. It'll be called "Look like you feel." The foundation will be a pasty sort of white. Eye make-up will be gray and must be used in a large circle surrounding the entire eye area. It will cause eye irritation so your eyes will be a bit red and watery and the area around your eyes will puff up fantastically. The kit will include a hair mask that you wear during the night. The mask will cause large chunks of hair to fall out and the remaining hair to look dingy and lifeless. It'll be appropriate for both genders and for all races.

[paddbear0000]

I'm glad you're feeling better Devon. How old is your son? He may be too young yet to fully understand about emotions (if he's still young). If he's older, maybe you can share some of what's on this site with him so he can better understand.

[devon]

paddlebear!  Great idea! I didn't think of that!   

I tend to compartmentalize much of my life so the various parts don't overlap.  I am doing that with my kidney failure, especially as it relates to home and my kid.  He's 16, soon 17, and perhaps reading some of the posts here will help him understand better what I'm experiencing!

I will encourage him to come visit!

Thank you for the suggestion.


-Devon

[paddbear0000]

Ah yes, I remember being his age. Like most other teenagers, I thought more about myself and my feelings than I did others. I think what he's going through is normal. It could also be his way of pretending everything is ok. If he ignores it, nothing is wrong. Maybe it's time for a heart to heart talk with him. Just my  .

[MyssAnne]

Devon, I'm glad the pain has subsided. The fatigue, oh yes.  I remember that well (probably because I STILL have it!!!)

And the expectations from the offspring...TAKE CARE OF ME!!! I think that's probably part of it, he's scared, and possibly figures if he
ignores it, it won't bite him in the butt.  I had to give my son the talk, and let him know I had expectations of him, to help me, a lot.

Good luck!!!!

[kitkatz]

My kids had to learn how to cook and make basic things.  I would come home exhausted and sleep so many afternoons.  Poor babies/.  But you know they became better cooks than I am!

[Loretta]

My daughter is 17. I adopted her when she was 12.  I was diagnosed with my kidney failure 1/22/07.  She had a very rough time with me being sick all the time.  I was in very bad shape when I was first diagnosed.  I had several things wrong with my lungs as well, and it took the Dr quite some time to look further for the real problem.  My lungs have healed and are doing fine now.  My daughter started acting out real bad and did several serious suicide attempts.  She ran away and ended up in Juvenile detention because she was already on Parole.  she got diagnosed with schizo-affective disorder.  After her time in detenion she went into a treatment center.  She is now doing quite well.  No more self harm.  She is learning to help out with some things.  She does all the heavy lifting like taking gartbage out, carrying groceries, and handling the five gallon jugs we buy water in.  We use a laundry mat down the way a ways from our apartment.  She helps me lift mine, and does hers on her own.  She also takes the dog out when I am really really sick.  I try to do the things that take less physical strength.  I do most of the dishes and cooking.  I do keep things that she can easily fix for herself for times when I really don't want to cook.  She does still demand a lot of time and effort, but she also helps in a big way.  She feels good about being able to help me.  I think with proper encouragement most but not all kids can learn to help out when they are praised and rewarded for doing so.  Sometimes it can take several years but they can learn to help.

[NolaGail]

Devon, I have a question or a favor to ask.  May I have your 'rant' printed on a business card so that every time I am asked how I feel or told that I look good I can pass it out?  It would save a lot of time and a lot of energy (on my part!).

NolaGail

[paddbear0000]

 

[devon]

I concur with Paddbear!       

And I like the business card idea too!

BTW... I had a visit with the surgeon who did the Fistula this morning and all looks good. Healing well, no infection and there is only one place where the original incision is not completely fused (about 25 percent).  I did my best to keep it sterile and used Neosporin under a sterile dressing.  I suspect I'll have but a small scar in a few months.   Sweet!


-Devon