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Backsliding in recovery - Page 12

post #331 of 1017
Heck, I "lost" about 7 months being on drugs. You're "conscious" at the time, but the memory doesn't work so well when you are on them.
post #332 of 1017
Thread Starter 
Who are you? What?:
post #333 of 1017
Thread Starter 
I got word on the biopsy today. There was a message on my machine when I got home. I'll call Dr. Z tomorrow to ask questions.


The biopsy came back NORMAL. Damn. Dr. Z said that he couldn't get very far into the small bowel and most likely didn't reach the area that is causing the problem.


He said that of the 3 polyps that were removed, one was pre-cancerous, but that it's gone, so don't worry about it. Well, it just appeared since September, so yeah, I think I'll have regular colonoscopies to make sure they don't just start cropping up all over. Do polyps grow in other parts of your intestine? Like, the parts you can't reach with a 6 foot tube? :Hmmm.


I have an appointment Feb. 22 in Boston with a gastro doc and I'm taking the biopsy slides and his report with me. I have the feeling that an exploratory surgery is coming up. Gee, can ya do it when my rod comes out so I don't have to go under twice? Although......there is a remote possibility that when the rod comes out, I'll be fine. I think it's unlikely, but stranger things can happen.


For now, I'm back on the steroids. The pain has been escalating and I woke up at 3 am with stomach pain......here we go again. At least I've stopped throwing up! Yay!


Celebrate your good health today!:
post #334 of 1017
Thread Starter 
We now return you to your regularly scheduled lunacy.....

Jeff and I went to Boston on Friday to see Dr. Y.....yet another gastroenterologist. It started snowing before we left home at 8:30 and was just nasty all the way there (and back). People in the hospital at 1 pm were hoping to go home early because of the snow. It's ok, it's only 3 hours drive home for us. We only got 4 inches out of it.....phhht.

His take on this is that the inflammation can't be seen on the INSIDE, so all of the colonoscopies were for nothing.: Ok, not one of the other 3 docs had thought of this at any time?: He didn't want to see my CT scan films from July, even though I had them with me. He kept the capsule endoscopy pictures I gave him on a flash drive and said he'd have someone look at them. He thought it was Crohn's....I said they've already ruled that out with a $400 blood test that was sent all the way to California to be done. He said, "You can't tell Crohn's from a blood test."

I don't know what to believe anymore. His advice is to stop the steroids and wait till the pain comes back (which will be soon if I am true to form), then driiiiive all the way to Boston for another CT scan. I am going back to where I was LAST JULY. The issues are still the same, so why the CT scan is not valid from July when I was unable to get up out of a chair and walk without screaming pain...is just lost on me.

I've been off of the steroids since Tuesday. I thought I may as well try it one more time. So far, not bad, but not normal either. Time will tell. I'm going to love driving in agony into Boston for something I can have done here at the hospital just 4 minutes from home.:

On the lighter side, I SKIED today! It felt good to get out and slide, and it was ok, but my knee sounds like sand is grinding away in it and it's swollen and numb on one side. We skied from 3:30-6, had dinner, then went out for another hour or so. Easy does it.

I met my orthopedist on the way to the patrol shack. He was leaving and we just got there. We chatted for a minute, and he asked how I was doing. I said I was no longer puking from fear when I put on my ski boots and that I've come to terms with the rod removal and I don't get the heebie jeebies thinking about that pain coming up, and he said "You don't have to have the rod out, you know." I told him I didn't think I had a choice given the fact I'll need MRI's for the rest of my life due to the MS, and I suggested we just give me one and let the machine pull the rod out....we saw it on House once........he started in on how that show is so stupid....

He said the snow was good, and off we went. It's nice that the surgeon who's taking out the hardware is a also a skier.

It was a good day. I skied and it was good. I even took my new Cool Thangs out for a ride. I'm gonna like them. Hurry, healing, and get thee Done!

I haven't had a bad headache since day 2 of the Nortriptyline regimen. I have good headaches now. I don't take other painkillers (unless you count the Entocort, but that is a steroid that works only in the intestine with about 10% going into the rest of the body). I sleep well, I have more energy, and only occassionally do I wake up with a headache, but it goes away in less than an hour.

Ski like there's no tomorrow.:
post #335 of 1017
Thread Starter 
I have the pain back......although much milder than last summer. Given enough time, it will escalate.

I called yesterday, per the plan, and they called back today.....they wanted to schedule me for a CT scan March 14th. Uh, I don't think so. I'm not willing to suffer that long.

So I'm going Sunday. Great. I can still ski tomorrow (Hopefully, we're getting a storm starting tonight).

She faxes the stuff to Jeff at work, and I find out that the test is in Waltham ...not even in Boston...and that it's a damn barium swallow test just like the one I had not 3 months ago!!! Special test, she said. It had better be a whole lot more special than the last one I took, because that test showed nothing!!!!!

Here's to more lunacy and back to square one.
post #336 of 1017
Ohhhh...! I pray this mystery gets solved, Bonni.

- KK
post #337 of 1017
Hey Bonni---sorry to hear about the 'yo-yo' action. Out of curiosity were you ever evaluated for celiac disease?
post #338 of 1017
Thread Starter 
doogiedoc...I don't think I've been evaluated for that, but I'm sure they don't tell me everything. I do know I've been checked for Lyme disease, Crohns, diabetes, thyroid, irritable bowel, and checked blood for inflammation, iron, etc........nothing is showing up.

I didn't ski on Saturday. I have been nearly headache free since Jan and guess what? Friday night, feeling good, went to sleep excited to be skiing the next day....and woke up at 3 am with a CRUSHING headache combined with the advancing stomach pain. I could have skied with the stomach hurting, but not the head pain too. Didn't sleep much at all after that, so the guys left without me.

Sunday, dragged my arse to Waltham for a 1 pm CT scan with contrast. Started taking Entocort again and doubled the dose on Nortriptyline when I got home, which is what they said to do if the headache didn't go away. Well, it left for 6 weeks. I should be happy I had that.

I can't for the life of me pinpoint any trigger for the headache. I felt great when I went to sleep, fell asleep quickly, and woke up after 4 hours of sleep feeling like I've been shot. I don't drink or smoke, didn't have caffiene for days (no soda or chocolate), wasn't around chemicals except for windex. I haven't painted in about a week (and I've painted plenty in the last 6 weeks).

I can't wait till March 18th, when this stupid rod comes out of my leg. I am soooooooooo hoping that things calm down with that gone!!! If it doesn't help, I'm going to get medieval on someone's ass. :

I can't cope with continued pain when there's no management for it. I haven't had a pain killer in almost 3 months, unless you count the Nortriptyline. I know why people use drugs now....if it kills the pain, it can't be all bad.

I've been on the phone with the insurance company all morning. I got a bill for one of the CT scans in January for $3396.18, of which it says I owe $1085.98. $3400 for ONE CT scan......and this new gastro guy wanted All New Tests. There goes yet ANOTHER $3400. I have to hustle my ass around and call all these people, because the secretaries are not doing their jobs.

The CT scan on Sunday is only covered for the abdominal scan. The secretary did not request a prior authorization for the second half of the scan...the pelvis. I will owe for this if she doesn't call them back. There goes $1000 out of my pocket if they don't make this right (and they WILL make it right).

I pay when they screw up. What the hell kind of business is this!!? What other business makes the customer pay when the company fails to do their job??

Who is getting rich here? Why is a CT scan in my hometown NOT THE SAME as a CT scan in THEIR town? It's wasted my time, money (travel and tolls), the insurance company's money.

I'm more than a little pissed at the system.
We need health reform and we need it now.
post #339 of 1017
Quote:
Originally Posted by Bonni View Post
I'm more than a little pissed at the system.
We need health reform and we need it now.
Amen, Bonnie.
I hope you find some answers and get some relief soon.

Rick
post #340 of 1017
Thread Starter 
Thanks, Rick, but it won't be soon.

Results from the CT scans are back. Everything looks NORMAL.

I asked him what we should do now. He said "I Don't Know." He said I could try (listing off a number of medications that sounded Greek to me), or Singulair. I said, isn't that like Claritin....an anti-histimine? He said yes, it will do the same thing as the low dose steroids I have been taking. A Nasal Spray was his suggestion. No diagnosis......gee, why am I not surprised?:

He did say that he didn't like the cysts he saw on my liver, and wanted me to either biopsy or MRI them very very soon. I told him I have the surgery the 18th to have this hardware out, and when I'm ambulatory again, I'll have that done.

He said you can't know it isn't cancer from a CT scan, that bad things happen to good people, and that you don't mess around with the liver. They found these cysts last summer during an ultrasound and said they were nothing to worry about. Again, who do I believe? Better safe than sorry, I guess.

I wonder if they can do a biopsy while I'm already out for my leg? That would be best......less pain and anxiety.

I am soooooo hoping this rod is the cause. If not, then I'm ready for the rubber room. It's a sad day today, raining outside and in.
post #341 of 1017
Maybe you could start writing some Country Songs...?

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[That was KK's lame attempt at injecting some humor in your life.]

- KK
post #342 of 1017
Thread Starter 
(to the tune of that lovely ditty from Cool Hand Luke about Jesus ridin on the dashboard of his car, only with some changes, and it goes sumthin like this here)....

Ohhhhhhhhhhh,

My pickup truck got two flat tires
when it run over my best dog Blue
as he was chasin down a possum for my luuuunch....

The wife run off with the Watkins man
while I was in jail for holdin hands with the
second purtiest gal in Haybale Gulch.

Just my luck, she drank my last beer,
spilt a little on her you know what an when
I tried to clean it up she slapt me hard.....

Hard enough to set me spinnin
out the door and inna the side o' the local
law enforcement ossifuuuur.

He warn't amused and I could tell that
any moment he was gonna
burst a vein ifn I dared to say a worrrrd...

That's when Blue he let a holler with
that possum on his collar but I don't
really know, my vision's blurrrred

God, I hate country music. It's so depressing.
post #343 of 1017
Thread Starter 
Writing country lyrics isn't hard, but it sure makes ya mean.

After the 'scare talk' by the good Dr. Y in Boston who is concerned about my liver cysts, I called my PCP on Wed, twice Thurs, and this morning.

I'm tired of waiting DAYS to talk to my doctors. Asking a question shouldn't be a days long affair!:

I got the answering machine AGAIN, left a really nasty message and used profanity and apologized for it, but I don't feel I'm being taken seriously anymore.

Depression is giving way to rage, and I don't know what is worse! After a year of pissing around, even the supposed BEST gastro doc in a Boston teaching hospital is more or less giving up on me after one CT scan! GRRRRRRRRR.

One week before the rod is out. I need a miracle.
post #344 of 1017
Thread Starter 
With 9 days to the hardware removal (the tractor and tow chain are in the OR getting ready as we speak), I feel like the cowardly lion.

I'm so tired of pain! I'm trying to psych myself into it being 'just a knee surgery', but I'm not doing so hot. I'm such a candyass.
post #345 of 1017
Hey, Bonni, I've got a rusty knife, Vice Grips and some old scraps of leather for you to bite on. And I've read a few Field Guide medical pamphlets.

Whatever they're gonna charge you, I'll do it for half price! (Will you autograph the rod once I yank it out?)

- KK
post #346 of 1017
Thread Starter 
KK, I didn't know you were a medical professional! Thanks for the reassurance. Things Could be worse!

I'm going to ask for the rod. They'll give me some spiel about it being a biological HAZARD, but I paid for it, I wore the thing, I want to make a windchime out of it! Wrap it up to go, please. I'll chip the excess bone off it myself. After all, I can't be a hazard to myself, can I?

Hmmm. I just may be!!
post #347 of 1017
Quote:
Originally Posted by Bonni View Post
I'm going to ask for the rod. They'll give me some spiel about it being a biological HAZARD, but I paid for it, I wore the thing, I want to make a windchime out of it! Wrap it up to go, please.
Your posts are the best, Bonni.

I hope things improve for you soon.
post #348 of 1017
Thread Starter 
Clang, clang, clang, that's my chime.

It seems silly that you can put a foreign object into the bones, but that person can't be allowed to keep the thing when it comes out (this is what I hear, and may be untrue).

I can cut my foot off with a lawnmower and bleed all over my yard, house, neighbor's yard, neighbor's house, but I can't keep my rod. I can knock my teeth out of my head with a rusty hammer, but the rod is hazardous material. It was more sterile than the rusty hammer or lawnmower at one point.

Baffling.

I'm derailing my own thread. We had a windstorm on Saturday night. I kept hearing funny noises around 10 pm. By midnight, it was louder, the wind was ripping with gusts to 40 mph and the temps were dropping from the 40's and raining buckets to the 20's and snowing.

We looked in the attic, nothing. I opened a window upstairs and it was louder. We went outside and the metal ice dam on the roof was flapping like a bat wing (not that kind, eek!) and about 4 feet of sheet metal would fly up and bang down every time the wind caught it. It got quiet about 3 am. In the morning, we discovered that the metal had sheared and was lying flat again, like bending a soda can over and over till it breaks apart. At least it's flat and not bent.

We just put on a new roof last summer, but the ice dams in the valleys were still good, so they stayed. I guess it wasn't that good! The guy who reroofed us in July is coming tomorrow to fix it.

Here's a picture of it. About 2 rows of shingles were flying up and down with it. Talk about noisy! Our neighbors behind us were up with it too. tee hee


Clear skies predicted for the next few days. My luck is changing for the better!!
post #349 of 1017
Thread Starter 
This is getting ridiculous.

Last night I dreamed (at least I slept long enough to get REM sleep!) that I was leaving work (what's that?) to go get this confounded rod removed.

One thing after another kept me from getting to my car, then to the highway, then into the hospital......and I was panicking that I wouldn't make it in time and they would have to reschedule me. ARGH!!!!!!:

I kept saying I would die if it didn't come out TODAY.

I'm no longer fearing the pain of removal, rather anxious to have it out and hopefully feel normal. A corner has been turned and my teeth are gritted with determination and the mindset that 'it's just a knee surgery' and I'll sail right along after the first couple of days.

Hey, if fooling myself works, I'm all for it.
post #350 of 1017
Quote:
Originally Posted by Bonni View Post
KK, I didn't know you were a medical professional! Thanks for the reassurance. Things Could be worse!

I'm going to ask for the rod. They'll give me some spiel about it being a biological HAZARD, but I paid for it, I wore the thing, I want to make a windchime out of it! Wrap it up to go, please. I'll chip the excess bone off it myself. After all, I can't be a hazard to myself, can I?

Hmmm. I just may be!!
That's how we got the drill bits from my husbands surgery.
Make sure the doc knows you want the rod and pins. Make sure its in the orders, and make sure Jeff stands your ground for you while you're in recovery.

The surgical tech came to the waiting room to explain to me why she couldn't follow the doc orders to let us keep the drill bits.
I explained to her that I better not see them on the billing if My husband couldn't keep them.
Then I further explained that she better hope she isn't within reach when he found out he couldn't keep what he paid for, or she'd know what wrath was.

That's how we got to keep them!
post #351 of 1017
Thread Starter 
Thank you Trek. Honey, you hear this? I'll be too zoned out to be assertive (I hope).
post #352 of 1017
Thread Starter 
I looked in the mirror to see if the word LOSER was etched on my forehead. It wasn't, but the thing staring back at me was scary.

I did talk to Dr. Z here in town about the liver cysts. He said "Don't worry. You'd have other symptoms if there were a problem there." He reassured me...somewhat.

The Boston gastro doc called in the prescription for Singulair (I may as well try it) last week. It wasn't there on Wed, and Thursday the pharmacy said it needed a pre-auth from my insurance company. Time is passing.

Called and left messages with his secretary. She called me back the next day, said she'd get that done. I got it this week, on Wednesday. (It took a week) What I got from the pharmacy was an inhaler for something called Flovent. Now how the hell will that work on my stomach pain?? The directions say to puff it and rinse it down with a few sips of water. I'm thinking this is strange, but don't think anything of it till Today....

I get the pre-auth letter in the mail. I'm approved for 10 mg TABLETS, not an inhaler!:

I call the secretary back and she calls me within an hour (WOW!) and says the inhaler won't do me any good, and will call the pharmacy to make sure they pull the right thing. I can't wait to go in. I'm not paying for the new script.

I also called the Boston neurologist this week to ask what I should do about the headaches coming back since I upped my dose of Nortriptyline to 20 mg a day and it didn't do squat. I called on Monday, left a message. The next day, I called again. Jeff also called to leave a message (he's not happy about the time it takes to get a call back).

Jeff gets the secretary, Shane, on the phone (he answered! Miracle!), and this guy tells him "I talked to her yesterday". As soon as he hangs up with Jeff, he calls me, and I tell him what's going on. He said the doctor would call me today.

Jeff calls me after we hang up and we're talking and he says "Why didn't you say he talked to you yesterday?" Because I DIDN'T. The guy outright lied to Jeff!!!:::
WTF!!!!

The doctor calls back, says I am on too low a dose, tells me to up it by 10 mg a WEEK till I'm taking 100 mg. He'll call in a prescription (I'm nearly out). He said they will be 20 mg tablets instead of 10 mg capsules and I can cut them in half to make 30, 50, etc.

The same day I pick up the INHALER, I pick up the new Nortriptyline. It's another bottle of 10 mg capsules, only the directions say "Take 2 caps at bed, may increase by 1 cap every nite to goal of 100 mg at bed, as tolerated."

ARGH!!!! It's supposed to be increased every WEEK, you morons! More phone calls ensue, and I'm being pushed to insanity.

We wonder how people get worse instead of better, how old folks overdose.....it may not be their fault!!!!!

Time to change pharmacies too. I'm so tired of incompetence!:

I have a nurse case manager now. I took my neighbor's advice and called the insurance company to get someone to advocate on my behalf with the myriad of 'professionals' tending my care. Let's see if that helps expedite things a tad.
post #353 of 1017
Thread Starter 
The poor guy at the pharmacy was really trying to stay cool when Jeff unloaded on him. I have to admire his attitude. After all, it wasn't his fault.

He got the prescription 'order' from the doc......and it was for the inhaler. Was the doctor at fault, and passed it off to his secretary to deal with? Hmmm.

We got the right stuff and didn't pay extra.

Yesterday, with mounting stress (someone please tell me to chill out!), I took my night meds in the morning. I have them in a pillbox to get ready for the coming week. It was all I could do to stay awake. I finally said fook it at 4 pm and took a nap, and woke up at 7:45 pm when the phone rang! Yikes!

I'm so full of pain and stress I can't think. My headaches are going full strength again and I'm only up to 40mg of nortriptyline. I just want it all to end! ARGH.
post #354 of 1017
ok, chill out..............

You made it this far, keep going, you're almost there.

I think I can, I think I can...............
I know I can, I know I can...............
The little Bonni than can...............or could..............or something............
post #355 of 1017
Thread Starter 
Chilling, sir. Thank you.

When the rod comes out, it will be hollow like a chocolate Easter bunny. How long will it take to fill? How unstable will it be? I need to write these things down and ask the doc (although I won't remember the answers!)

Raging headache all night and this morning. I wish I had a drug to kill the pain, but nothing really works.
post #356 of 1017
Thread Starter 
T Minus 18 hours. Git er done.:
See you on the flip side.
post #357 of 1017
Good luck Bonnie Bonni, speedy recovery.

Stiff upper lip and all that.

:
post #358 of 1017
I'd tell you to go have a cocktail, bein' that it's St. Patty's Day and all, but I suppose the surgeon would be a little pissy about that. So instead, here's wishin' the luck-o'-the-Irish on ya, good luck, Godspeed, and may this be your cure so you can get on with the "normal" Bonni! You're in my prayers this evening!!!
post #359 of 1017
In theater they say "Break a leg" instead of "good luck."

I'm stickin' with, "You are in my prayers, Bonni."

- KK
post #360 of 1017
Good luck with surgery, Bonni!!!!
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