Hi, My Name is Audrey, and I'm Miss 26

The BBQ Pit
#1

I’m sucking.

Not in a vague paycheck-doesn’t-cover-all-the-fun-I-want-to-have way, not in a Bad Hair Day way, not in a my-boyfriend-dumped me way, not in a bad-sniffly-cold way, not in a I-hate-my-evil-boss kind of way…

Oh, no. My suckage is concrete and inevitable, and cannot be solved by calling my best friend, getting a payday loan, buying a new conditioner, listening to sad songs, or eating a whole pint of Ben N Jerry’s all by myself.

Nope.

I found out this week that I have to have surgery. For a condition that affects only 26 out of every 100,000 people. I’m not a girl who deals with those kinds of odds very well. I keep sitting here with that whiny part of my brain screaming, “WHYYYYYYYYYY?” I’d like to be a better person, and not wish those kinds of odds on anyone in the whole world but me, but unfortunately I am not a better person.

Why can’t I be the 27th person amidst the hundred thousand? Why don’t my lotto numbers have the same luck? Why didn’t the irritating schmuck next to me in this sea of people get struck down with this, instead of me? I bet he takes twelve items to the Ten Items Or Less line at the grocery store…I bet he lies on his tax returns, and watches PBS but refuses to donate…I bet he always asks for the manager…I bet he turns his porchlight off on Halloween…I bet he doesn’t rewind…I bet he litters biodegradable items and comforts himself with the fact that they’ll decompose “someday”…I bet he requires a bag for a single item…I bet he’s a cheap tipper…I bet he tailgates…

And yet he’s fine right now, whoever he is. Mr. 27. And I’m still Miss 26.

Miss 26 has a Pilonidal Cyst.

Which has flared up twice this year, and has flared up again this week. Miss 26 has to have an operation next week which will prevent her from working, sitting, walking, or driving for, oh…anywhere from two to eight weeks. This is a surgery where they split you open right below your tailbone, excavate a lot of infected tissue, and leave it open. You have to rinse it out with saline 3 times a day, stuff gauze into it, cover it with more gauze, and somehow manage to live for a month or so without sitting. Drugged up on pain meds, in a fog, making no money, going slowly mad.

With a hole on your ass that could be inches deep and inches wide.

Yeah, I’m sucking.

Fuck, this is bullshit.

#2

((Audrey Levins)) I have no words. I’ll pray. Keep us updated. :frowning:

Have you found a way to tell your family yet?

Do you know if your insurance will cover it?

Maybe there is some way you can get some type of temporary disability payments so you will not fall behind?

I’ll pray that something surfaces, and that you will stay sane will you convelasce.

#3

Audrey:

Been there, done that, got the scar.

Okay. What you will really have to be concerned with is the cleaning of the wound while it is healing. The discomfort isn’t that bad.

The surgery was tolerable with the spinal they gave me, and as I heal fast(pre MS) within a couple of months it was fine.

You’ll be okay. I promise. It is an inconvienience, nothing more.

Keep the faith.

#4

Thank you, Zabali. Mr. Levins will be helping me with the convalescence…and with the cleaning and packing of the wound…and I just signed up for something called Carelink here locally, so the surgery/meds are pretty much paid for, except for a small monthly payment. (Thank God for that, or there would be no way I’d ever pay for any of this. Apparently the surgery, with post-op and anesthesia, costs about $3,000. There’s no way I’d ever come up with that.)

Mr. Levins will continue working; I’m taking a leave of absence. Money will be tight, but it always is; I’m just glad I’m not paying out-of-pocket for the surgery.

And thank you, also, Mockingbird. I need words of encouragement; I’ve researched PC’s and there’s a whole forum devoted to them…and of course the kind of people who frequent a forum about it are the ones who’ve had problems, so they’ve all got appalling stories.

How long ago was your surgery? And did they leave it open, or did they stitch it shut?

And what, if I may risk sounding ignorant, does “pre MS” mean?

#5

Pre MS means before I was diagnosed with multiple sclerosis.

They left it open and the wound had to be packed and cleaned daily.

I’d go into more detail, but my right hand is tired and typing right now is difficult.

If you want more info privately, e-mail me.

#6

Pre MS probably means Pre Multiple Sclerosis.

Audrey, meet another Ms. 26.

I lived with mine for 3-4 years, and it was horrible. Embarrasing (no pun intended), painful and annoying. I first got it when I was pregnant (is there a worse time?!!?) and it was diagnosed incorrectly by my doctor (which wasn’t a surprise). They refused to do anything about it at the time, because I was pregnant, and afterwards, I had my hands full.

It went away, and came back, went away and came back.

Finally came the day when it came back and would NOT go away. I couldn’t sit down and was practically in tears. I told my BF that we had to go to the ER. They did the procedure right there, I couldn’t take the pain anymore.

My surgery was in August of 2001. They do not sew it up, or you run the risk of infection. It has to be cleaned out several times a day, especially after showering (and um…TMI, but shower every time you go to the bathroom…#2). Take your pain medication about 15 minutes before the gauze needs to be changed.

Beforehand, buy a bunch of gauze, tape, and a heat pad. I got one at WalMart that I could heat in the microwave, and I just laid with that on my bottom for days at a time.

I didn’t have any problems after it healed, which really did take some time (several weeks). Fortunately/Unfortunately, I wasn’t employed at the time. Taking off work wasn’t a concern, but I didn’t have insurance, so I still owe the hospital a bit of money.

Oh, one last thing…something that really started to suck. After several days of tearing the tape off, it really really started to hurt, and my skin was raw. I used a lot of lotion to combat it a bit, but be careful with the tape that you buy, and have it attached to as little of your skin as possible. And, if possible, vary the exact location of said tape.

Almost two years, PC free and loving that. I hope to God it never comes back (they said it could :frowning: )

And if you haven’t read this already, and care to kow, there are three prevalent theories on how this horrid thing occurs:

  1. Born with it
  2. Really obnoxious ingrown hair.
  3. Falling on your tailbone.

~J

#7

Thank you for your replies, Mockingbird and Jaade. I have read that the best method, while it takes the most time to heal, is the open method…I’ve also read about leaving it partially open/partially stitched. I won’t know which method will be used yet on me; I have to talk to the surgeon, whom I was referred to for an appt. within a week.

The thing is, it’s inflamed right now, and while it’s not to the unbearable/can’t sit/barely walk stage yet, it may get there, even though I’m on antibiotics…so I’m wondering if I should call the the doc and see if I can schedule the appt. with the surgeon earlier, perhaps going “under the knife” before it gets out of hand like it did the last two times. (The first time they lanced it open and packed it; the second time it drained itself. I don’t think I can wait that long, or go through that kind of pain again. I’d rather have the op.)

And Jaade, I do remember the awful chapped feeling from the tape when they lanced it, and that was just for a week’s worth of taping it. I’ll be sure and try to get some “low tack” tape; that’s just one more thing I don’t want to deal with. :smiley:

This is all a bit new to me; I’ve never had surgery before, or been to the hospital, or anything…so pardon me if I sound whiney. I’m just really frightened and dreading the recovery period.

Mr. Levins says we’ll get cable for me, though, to entertain myself. :smiley: Normally I never have time to watch TV, so I haven’t had cable in years.

Hey, it’s a tiny little thing to look forward to! I need all I can get.

:slight_smile:

#8

If it makes you feel any better, Mr. 25 was Rush Limbaugh.

#9

Oh Audrey, I’m so sorry. What a truly appalling thing. It’s no fun feeling like the law of averages is weighted against you… Anyway, I’ve always enjoyed your posts and you seem like a strong, plucky woman. You will pull through this! Keep us posted and good luck with the operation.

#10

My husband had one of those years ago. He had the surgery, and I got to take care of him while it healed. The doctors tried stitching him up, but his wound got infected, so they opened it up again.

He said that it was more aggravating than painful. When I changed his gauze, I soaked the tape with peroxide to help loosen it.

Good luck.

Oh, and I got pregnant three times in two years, once on the Pill, once on foam and condoms TOGETHER, and once with an IUD in me. So I know what it’s like to beat the odds in a bad way.

#11

I remember my brother-in-law having surgery for a PC. According to my sister, his experience was what others describe–more aggravating than painful.

In terms of surgery itself, if you have spinal anesthesia like Mockingbird had, you won’t have the complications of a general, which in my opinion are the worst parts of surgery. I hate the drugged-out feeling and the nausea. The surgeries I had with only a local were a piece of cake compared to the ones with general anesthesia.

Along with cable, get yourself some other stuff to look forward to and keep yourself busy. I always make sure I have a good book started and a few more in reserve, plus special food I like. A new nightgown or some comfy around the house clothes are good, too–anything to look forward to or to keep me comfortable.

Best of luck. With any luck at all, it won’t be as bad as it seems to you now.

#12

Audrey, since you’ve had it lanced before, you should know pretty much exactly what they will do.

Leaving it open and packing it is really the best solution, to keep infection away.

I didn’t have general anesthesia, or a spinal. They did locals all the way around the area.

And lastly, Lynn…my mother got pregnant with an IUD as well. :slight_smile:

~J

#13

Doh, I forgot one of the things I really meant to say.

Boxers…or nothing. I didn’t wear undies at all afterwards, unless it was really loose boxers, so you may want to check into that. It’s the most comfortable thing I could find.

~J

#14

{{{Audrey}}}

I had this surgery almost 15 years ago, when I was 13. At that time the cyst was leaking and staining all of my clothes. I really didn’t want to have the surgery, but I couldn’t talk my mom out of it.

The surgery itself wasn’t so bad. I was able to go home from the hospital the same day. The first night was the worst, but the pain wasn’t too bad as long as I didn’t lay on my back. I didn’t spend too much time in bed, either – I remember sitting outside at the picnic table with my family about 24 hours after the surgery.

I had an open wound, so I had to soak it and pack it with gauze every night. The wound was very sensitive for the first couple of days, but after that the treatments were no big deal. I even went on vacation with my family while I was doing the wound care. By the time school started a few weeks later I had forgotten all about it.

Like other posters have said, I found the experience more aggravating than painful. Yeah, having to undergo surgery really sucked, but in retrospect, the minor pain and inconvenience were worth it in the end.

Best of luck, Audrey! Keep us posted.

#15

You poor thing! You have my sympathy :frowning:

#16

Oh, do I have some stories to tell you!!!:stuck_out_tongue:

Pull up a chair.

My brother had to have 4 surgeries for PC, and it seems to have cleared up for him.

So far, I have had 6 surgeries, the last one being in 1992, and I was scheduled for another surgery in 1995, but the wound closed on it’s own.

The thing that is so damn irriatating about PC is that there is no one method/procedure with a 100% success rate, and the more procedures you have, the lower and lower the success rate goes.

PC absolutely kills whatever social life you had with the opposite sex. Period. End of story.

Speaking of periods, my friend Steve said it best when he described PC as "like having a period 365 days a year

2 of my procedures were of the “Leave it open” variety, but they never healed all the way up.

The other 4 were the “flap” variety, and the last one involved a plastic surgeon.

#17

This sounds AWFUL. You have my sympathy. I have a very different rare medical condition (we’re talking one out of a MILLION here) and it’s been known to piss me off, too.

At least the doctors have HEARD of yours. Mine, they might recognize the name from a paragraph in a med school textbook. Or they might not. ARRRRRRGH!

#18

My brother is off work at this very moment due to this! I had to call him and go through the “guess what!” routine.

He’s had the problem for the past 10 years or so, and finally went through the operation at the end of March. It was quite painful for the first few days, after that just uncomfortable and annoying. He did have a daily visit from a nurse to change the packing (the last visit was actually Friday just gone) and has had a few out-patient appointments as apparently it was quite deep.

He just had a few problems: a nurse didn’t pack the area with gauze properly; he had a minor infection (antibiotics cleared it up) but apart from that nothing too bad. He does wish he’d done it years ago, the doctor says he shouldn’t have any future problems.

He says it was a fucking pain in the arse lying on his front all the time though! :wink: Anyway, we both send you our best. {{{Audrey}}}

#19

Thanks a lot, everybody, for all the stories and kind words! As suggested by Brynda, I have a stack of books already; Mr. Levins is a very poor judge of what I’d like to read, so I thought I’d stock up while I can. I’m also getting two new sets of sheets for my bed…comfort and cleanliness are the keywords here…and I may “invest” in some boxers, Jaade. That makes sense.

Also for Jaade: You had locals all the way around? Was the cyst inflamed at that point? B/c when they lanced it the first time, I got 2cc’s of Lidocaine injected directly into it–oh my God, it was like seeing a whole other rainbow–and I STILL felt everything the doctor did to drain/lance it. This is why I don’t think I want a local; I’d rather be knocked out. That afternoon in the doctor’s office stands as just about the worst two hours of my life.

The only time I’ve been “knocked out” was for my wisdom teeth removal…and they just gave me a shot in my arm. No IV, no nothing. Just this blissful shot in my arm; the doc said to “count backwards from 100” and I got to 98. No one I’ve talked to is familiar with whatever shot he gave me; most people assume I had an IV…this was about eight years ago and I’m still kind of curious as to what it was. :smiley:

I was groggy all day from it…in fact, I got up too quickly at home later and fainted…but I’d still take that shot over being awake. I’m a big chicken.

As for you, Lynn, props for taking care of your hubby. That enviable job falls onto Mr. Levins; you know it’s love when he/she can stuff gauze into a hole in your ass twice a day.

My main goal here is good drugs. They gave me Vicodin last time for the lancing/packing and it didn’t do anything at all for me but make me groggy; I still have half the bottle b/c I just stopped taking it. It was pointless. I hear Percoset is pretty good stuff. Anybody have any recommendations? I want to be out of it for several days following the surgery, so if any of these pain meds have that side-effect, I’d love to hear about it. :smiley:

Oh, and Red Devil, tell your brother I do feel his pain. Literally. Your back really gives way after a few days of lying on your stomach…or at least, mine did. You spend so much of your time compensating for the PC that the rest of your body gets really worn out/sore. That’s what I’m really not looking forward to; my spine is somewhat hyper-curved to begin with, so lying on my stomach all the time really begins to aggravate it.

Thanks, everybody, for all the support! It’s nice to hear that other people have done this. I feel better already.

#20

Audrey, yes. It was an emergency procedure. Basically, since I couldn’t have it done the first time it flared up, and the other times it had gone away on its own, I got really freaked out when it wouldn’t drain like it had before, and the area around it was getting HARD and turning red.

So when I got there, the doctors decided they had to do it right then, not schedule me later. They gave me about 6 shots in a semi circle around the swollen area. It HURT, but I HATE HATE HATE needles, so you might not experience that. I didn’t feel a thing when they did the actual procedure. BF held my hand the WHOLE time…though he was a bit grossed out. ~L~

I did faint on the way out of the ER though. I told BF I needed to sit NOW and he said, ok honey…we are going to the car, it’s ok. I said no, NOW…and then a nurse caught me. ~heehehee~

Some people do have problems afterwards, but I’m betting you will do just fine. :slight_smile:
Dodeca…ouch. :frowning: I’m sorry you have to be in that percentage of people that don’t get it fixed correctly. That was my worst fear. So far, I’m safe. How long after the surgery did yours reappear each time? Fairly quickly?

~J