or Connect
New Posts  All Forums:Forum Nav:

Backsliding in recovery - Page 6

post #151 of 1017
Thread Starter 
Gee, the fun never ends.

New gastroenterologist needs another colonoscopy with biopsy of the ilium, which was not looked at in April. Monday is the funday.

If I had 3 wishes from a genie's lamp, I'd ask for a pain free good health, and give away the other 2 wishes.

The good news is that I've worked like a madman the last week while on the steroids, so if I'm down again, I'm caught up. Argh.
post #152 of 1017
Thread Starter 
I'm cursed.

Biopsies taken, and I am no further into the diagnosis. The did an upper (through the throat) and the colonoscopy (which I woke up for the last few minutes:, and I now need a small bowel barium x-ray on Friday.

I still have the stomach pain, although not as bad, but I'm really frustrated just from the time this is all taking. I tweaked my knee on the broken leg getting off the doc's table last Friday (the floor was about 6 inches lower than I thought....you know the reaction!), and it's a pain.

My head is surrounded by anvils. I have Vicodin, but don't want to be the addict. I use about 3 a week just to remind me what real people feel like on a daily basis. If I eat them when I need them, I'm almost certain they will cut me off and say something like, "You can't just keep taking these. You'll become addicted and we can't have you pain free and using."

It's amazing I'm still so GD cheery.
post #153 of 1017
Originally Posted by Bonni View Post
My head is surrounded by anvils. I have Vicodin, but don't want to be the addict. I use about 3 a week just to remind me what real people feel like on a daily basis. If I eat them when I need them, I'm almost certain they will cut me off and say something like, "You can't just keep taking these. You'll become addicted and we can't have you pain free and using."
I am no expert on painkillers, but my understanding is that as long as you use them while you're in pain, there's nothing to worry about. My cousin has had the world's nastiest case of shingles over the past few weeks, and he was worried about the same thing, and that's what the doctor told him. Just don't use the painkillers when it doesn't hurt.

Again, I have absolutely no qualifications whatsoever to speak to this, just secondhand info, but talk to someone who does, because there is no need to suffer even more if you don't have to.

Hope things look up EVENTUALLY. Sheesh.
post #154 of 1017
I know a bit about what Bonni is going through. When they took me off the Percocet, I was really upset. The Percocet had drugged me quite a bit. Didn't really get rid of the pain, but made me not care. I had been on it for weeks at that point and the doctor decided to move me to Lortab, which I think is the same as Vicodin. I puked for nine hours straight on it. Then he tried Darvocet, which I thought was doing NOTHING. After weeks of my complaints, they sent me to a guy to do some kind of pain block for my arm. It didn't do a thing and I told him so as soon as I came out from under the anesthesia. See, I not only had the muscle pain, but also nerve damage. It felt like a spike was going through the middle of my palm even though there was no damage to my hand. I also had what I called "sparklers" of pain running up my arm when my wrist moved. That was all in addition to the "real" pain due to bone and tendon, etc. damage. So, since the first block didn't work, they scheduled another type of pain block, which also didn't do a damn thing. By this time it was July and I'd been in constant pain since the accident. I was getting pretty close to suicidal and would start crying at the slightest thing. Finally, the doctor put me on Neurontin in addition to the Darvocet. A magic bullet! It took away a whole layer of pain due to the nerve problem. The Darvocet handles the pain due to my accident. Anyway, although I still don't have full use of the left hand, it's more stiffness than anything. But the constant pain up until the Neurontin was really just so undermining to me. On some of the medications, sound was magnified so that I would jump at anything and everyone was acting like I was a nut case at my complaints about the slightest noise.

By the way, my physical therapist said the same thing about the pain killers. She claims if there is pain, the body knows and sends the drug to the pain area and these things are only an issue if there is no pain. Frankly, I don't see how that is possible, but I really did wonder why ANYONE would want to use Percocet or Lortab as recreational drugs because of the dizziness, sound amplification and the CONSTIPATION (like delivering a child after two weeks, believe me).
post #155 of 1017
Thread Starter 
Thanks, seg and sib. Your experiences help put it all into perspective. It helps to know I'm not going CRAZY.

I've been dropping off to sleep at midnight and getting up at 3:30-4 am and staying up......this has been going on for days. This morning I got up, wrote the short story for the book (I had been writing it in my head for a week and it wrote itself in under an hour), and was watching the sun come up when I hit the send button. At least I'm getting something done. I hope they buy it. If so, I'll do some more.

Now, can someone please stop the cat from purring so LOUDLY!!??
post #156 of 1017
Hmmm, you're writing?

My first knee surgery was during my senior year of high school. I didn't take too much of the Vicodin overall, because it tended to make me sleepy, but I did use it my first day back to school. We had an AP English test that day, and I was really INTO it. I received my highest grade of the year, writing on Vicodin.

Just sayin' .... Maybe you can take advantage?!?
post #157 of 1017
Thread Starter 
(from Almost Famous)........

I'm a Golden God............and I'm on DRUGS!!!!!!
post #158 of 1017
Originally Posted by Bonni View Post

Now, can someone please stop the cat from purring so LOUDLY!!??
Mr B loves you . Now pet his head, thank him and tell him to go play .

Anything else I can help you with ,your majesty ?
post #159 of 1017
Thread Starter 
And a big thump on the sides and an ear rub to Bootsy!
post #160 of 1017
You got a cat named Bootsy? Till last year I had a cat named Bootsy. He was my favorite (of 3), but last October he didn't come home.

Now I'm in a major depression. Thanks! :

The "boot man" probably shot by an evil hunter or that coyote got his adz.

Actually ..... just trying to use deflective tactics to cheer you up. Hell, give Boots a bit of catnip and you can pop a few whatevers and both roll on the floor and act stupid and have fun.

Yeah, I do miss that dopey SOB even if he was a couch hog and loved to play by clawing my arms to shreds.
post #161 of 1017
No Yuki I got a dog named Boots. White feet a rot/boxer. I hate losing cats . now mine stay in at night .Coyotes think they are a great late night/morning snack
post #162 of 1017

Now we'll have to take up a collection to send Bonni the cat that she deserves or thinks she has.
post #163 of 1017
Originally Posted by Yuki View Post

Now we'll have to take up a collection to send Bonni the cat that she deserves or thinks she has.
Her tabby is called Mr Biscuit. Haven't you been paying attention here ? This is important stuff. Pets are great therapy to get us through bad times.
I owe my dog so much when I needed nothing but a silent, loyal companion. no judgments just someone the hang with you through thick and thin
post #164 of 1017
Thread Starter 
This one is quite enough, thank you. The other 2 are barely on the radar with Mr. Big Nose in the mix.

post #165 of 1017
Thread Starter 
Still no results from the endoscopy, colonoscopy, biopsy, and barium small bowel, but I got 2 shots of nerve blocker in the head from my neurologist that took away some of the headache and I actually slept 5 hours straight last night! Renewed!

He put me on Topamax temporarily, until I know if Chron's is a positive thing. I should know Monday. I held off as long as I could on drugs for MS, but it's been a strange year, and it's time.
post #166 of 1017
Thread Starter 
It's been a while. Update for the interested.

Off the Topamax after 5 days. I had strange side effects: tingling from the waist down, and it was NOT pleasant. Scratch that.

I had a couple of days where the headache was lessened after the nerve block, but went right back into horrid again. Neurologist gave me something for migraines, and that also went by the wayside. No real relief. I see him again on Wednesday. He will not be pleased. I'm even less so.I am the horse.

The small bowel endoscopy with the pill cam went well......no real 'clean out' but I couldn't eat for a while, and no drinking or eating at all for about 12 hours....but the findings were nil. They found inflammation and 3 small ulcers in the small intestine, but he said that wouldn't give me the stomach and back pain with irregular bowel movements that I've had lately (add tossing cookies to the mix. It seems I throw up for no reason anymore, and it's a violent thing lasting quite a while till there's nothing left to come up but bile).

I am convinced I'm going to feel like crap 99% of the time for the rest of my life, and nothing is going to stop it. Funny.....I felt fairly good in Spokane on vacation, and the minute I hit DC and the heat and humidity, it all went to hell again and stayed that way. :

I also feel almost 'normal', the way I used to feel, when I take 30 mg of Prednisone daily. Of course, I can't take that!!!! That's what they all say......."You can't take that." If I have energy, get things done, don't have a lot of pain........it must be bad for me! Better to crawl around in agony all day.

post #167 of 1017
Thread Starter 
Another update for the interested, or maybe I'm talking to myself.

Another surgery yesterday to remove a fist sized tumor from the base of my neck between my shoulders. I just thought I was fat. I'm seeing a new docto and he asked me if I wanted it removed......could it be a cause of the headaches?

The surgeon he referred me to said he usually just gives a local and takes them out in the office, but this was HUGE (his word), and so arranged for an outpatient procedure with MAC sedation. However, morning of the surgery, the anesthesiologist said NO WAY, that thing is too big. I'll be lying prone, and she can't monitor me that way, so I had a general anasthesia.

I have 15 staples, a drain till Friday, and it left a large crater in my back. I can't sleep well as my arms feel like they've been pulled by a Medieval Rack. I can't brush my hair or lift anything heavier than a water bottle. Fun.

I don't know if this will remove the headaches, as I'm on Vicodin for a couple of days. I sure hope so, because life is just a world of pain these days.

I'm going backward with my leg, but the ortho doc says, "It's just the way it is, you're healing fine, according to the xrays." I feel like I have another meniscus tear, and I'm back to hobbling and limping the last few weeks after a near complete recovery. I'm baffled.

I tried on my ski boots and took a step and just cried. I'll not be skiing anytime this season soon. Damn. I'll need anti-depressants when the snow starts flying.

The anal fissure came back 3 days ago after being off the Entocort (internal steroid) for a week. I'm going back to the same old crap and the gastroenterologist just shakes his head. He hasn't got a clue. He's the third doctor to look at me. Should I go for a fourth or just give up?

A friend of mine said if she were me, she'd Get Out Of Town and go to a major city and see someone there. Her way of thinking was that this town is full of third rate doctors who can't land a job at a good hospital so they end up here. I'm not sure I agree with that, but then I think: Who the hell would want to live in this depressed, dirty little town in the middle of nowhere if they could live anywhere else in the world? She may be right.

All of those doctors who barely passed the exams have to work somewhere.
post #168 of 1017
Hi Bonni,

I'm new on this board, but after reading your thread, I feel like I almost know you a little by now. You have been through an incredible ordeal, but I really admire how you are holding up. And your bright, very engaging personality shines through your difficulties in your posts!

It sure seems like you have had a hit and miss experience with all those doctors. Some of the conflicting advice like the high fibre diet incident might have even complicated matters. And having to wait for days before getting pain meds on several occasions had to be very hard on you.

I have accumulated a small personal stash of Tylenol 3's with codeine over the years from previous dental issues that I keep just in case I might need something. Forget about expiry dates - I just keep it in the fridge - but maybe I should put it in the freezer?? But I'm thinking now after reading about the on-hill pain and delays after injury, that I should keep some in my ski bag for emergency use.

I'm also thinking that it might be good for you to have a new doctor with a different specialty review your case. A specialist in internal medicine in a larger city might be the choice - their skill is in diagnosis, and they might be able to develop a comprehensive plan for you with fewer meds that won't conflict or give you other complications that compound your body's healing issues.

I wish you all the best for the future!
post #169 of 1017
Hi Bonni, I haven't checked in for a while on your progress..or its backsliding. Wow! I saw the ski crawl this year will feature Jeff and you will find something else to do. This is a lot of **** to happen to a person over an 8-month period. I sure hope the headaches are gone! :

My thoughts and best wishes are with you as you recover again. Hope to hear some good news on the health front from you soon. :

++++++++++++++++++++++VIBES+++++++++++++++++++++++ +
post #170 of 1017
Thread Starter 
Hi, empressdiver, thanks for the thoughts. Love your moniker!

Thanks, Cirque. I sure wish I could spray a little sunshine around, but it would be more like blowing smoke.

Off the pain meds, and within a day, the headaches are back just like clockwork. Last night's sleep schedule:
11:30-1:10 am
Give up and take a pain med at 2:30
Lie awake will 4:40 and drift off
Wake up at 6:30 when Jeff's alarm goes off
Sleep a couple hours from 7-9

I'm going crazy. Literally. I don't have one minute of one day where I feel good.

I have an appointment with my doctor on Thursday, and I'm demanding some decent painkillers and a full body MRI. I want to feel good enough to LIVE while they're pissing around trying to figure something out, not limping and crying with every movement while I try to get anything done.:

There are too many things going on to be isolating each thing as a separate issue, then NOT diagnosing that piece and letting me drift without a plan. I'm sick of it, and frankly, I don't like who I am right now. I'm irritable, ANGRY, depressed and so sleep deprived I can't sleep any longer.

It's a good thing I'm staying away from Epic. I'd be banned in a day!
post #171 of 1017
I'd just like to have them ban the parts that hurt.

Have you tried any holistic or alternative types of treatment ?

You need some kind of relief because entering into sleep deprivation will cause mental issues. I'm not saying you're crazy but I had a friend who couldn't sleep for days and he sure was after a while.

We're there for ya kiddo. Hanging with you and hoping for some relief.

Keep sharing cuz we keep caring.
post #172 of 1017
Glad to hear the neck operation was a success and that the leg bone is healing. Really sorry to hear about the headaches, knee pain, bloody asswhole and sleep deprivation.

No, you are not talking to yourself, you are talking to a lot of people who care a lot about you. I'm praying for you to feel good again. It might help even though I'm sorta agnostic. : I don't know what else to do. Get well, Bonni!
post #173 of 1017
Hi Bonni,

I haven't read though this entire thread, just the last page, but I know a bit of how you feel. I broke my leg last year in November and my ankle in January. It was a long slow process getting back.

Have you tried sleeping pills? Even with the other meds you're taking, there must be some type of sleeping pill that would work for you and not conflict with the other drugs.

I agree that you should find a new doctor or set of doctors. With the money you unfortunately won't be spending on skiing, fly to New York or Los Angeles. I would recommend UCLA in Los Angeles. After seeing 3 totally unqualified orthopeic surgeons elsewhere, UCLA is where I finally found someone who was qualified to repair my leg/knee. They have some of the best doctors. Good luck to you.
post #174 of 1017
Thread Starter 
skibum4ever, you're the 4th one to suggest gettin out of Dodge to get another set of opinions. I'll discuss that tomorrow.

Today I saw an ENT who numbed my nose and shoved a scope up it to look around. My sinuses are ok, and the CT scan from April shows nothing abnormal. By process of elimination, we've ruled out migraines and sinus issues.

Tee hee, after he numbed the nose and throat, he goes spelunking, and said, "That wasn't too painful, was it?"
I said, "No, it just tickled a little", to which he replied, "Man, you're tough!"

If he only knew what I go through in a day, he'd think twice about that namby pamby 2 foot scope on a rope!

Pressing onward.
post #175 of 1017
Sorry to hear about this horrible ordeal with your health Bonnie! I would recommend the Mayo Clinic! My brother went through a similair ordeal and he finally got his answers and his cure there.

Good Luck!
post #176 of 1017
Originally Posted by Bonni View Post
If he only knew what I go through in a day, he'd think twice about that namby pamby 2 foot scope on a rope!

Pressing onward.
Bonni, I love your sense of humour. You should start writing articles for one of the hard-copy ski mags!
post #177 of 1017
I forget whether I've asked already, but does that stand for empress of ireland?
post #178 of 1017
Originally Posted by cantunamunch View Post
I forget whether I've asked already, but does that stand for empress of ireland?
Yes, for those that don't know, the Empress of Ireland was a passenger ship that sunk in the St. Lawrence River near Rimouski, Quebec, on May 28, 1914, after being struck amidships on the starboard side by the Storstad. The Storstad withdrew, leaving a huge, gaping hole allowing water in and the Empress sunk in 15 minutes. The death tole was monumental. Out of 1,057 passengers, 840 died - more than the Titanic. 172 crew out of 420 also died.

The Empress is one of the best technical wreck dives in North America and I have done several dives on her.
post #179 of 1017

You've endured more medical conditions in a year than most of us have in a lifetime so you know more about what to do than anyone here, but for what it's worth I agree you should consider something different.
I'd suggest you consider a multi -discipline clinic like Mayo or a BIG medical school that's strong in multidiciplines. Multiple problems with multiple medications are almost infinitely complex. I'm told only a few places are really equipped to handle this type of interrelated complexity.
post #180 of 1017
Thread Starter 
Thanks, steveturner, and that is coming up next. Here's the latest newsletter:

Health update:

I saw my primary care doctor today and we talked for half an hour! Someone else is going to have a short visit. We came to the conclusion that there are no conclusions.

3 colonoscopies and steroids for the stomach pains did not reveal a diagnosis. I'm off the steroids, and the pain is back; it's just less severe. The third gastro doctor I've seen for this, Dr. Z, said he just didn't know what it was, and left it at that. "Call me if it gets to the point where you can't function." I have no further instructions, appointments, or hope. No solutions, no diagnosis.

We have ruled out sinus problems, migraines, dental issues, chiropractic solutions, and diabetes for the headaches after seeing a passel of different doctors and 3 dentists. We've been trying different things for the last 10 months. I'm sleeping less and I'm more tired because I don't get good rest. I nap during the day and wake up feeling worse. I go to bed with a 'hangover' (that's what it feels like.....the worst one you've ever had), wake up with a hangover, sleepwalk all day with a hangover. No solution, no diagnosis.

My broken leg was feeling good in June, I was out of physical therapy (there wasn't much of it anyway), I was no longer limping and all that was left was some soreness in my knee, but only when I was kneeling on it. As of September, it hurts to climb stairs, I can't kneel at all, my ankle hurts, and I can't stand on one leg without massive deep pain in the knee and ankle area. I'm limping again and feel like I did at the 3 month mark. My orthopedist took x-rays and said it's healing well, and "That's just how it's going to feel." I can't have an MRI because of the rod. I'm going backward in pain, but the mobility is still very good. No solution, no diagnosis.

My neuroma foot is back to where it was when I originally had surgery. I don't even bring it up anymore. It's the least of my problems, but it's still there and I'm back to walking on a golf ball. A third surgery is not going to happen.

My pupil that was stuck open is no longer stuck open, but fluctuates between a working unit and one that does not. I'm still incontinent at times, and my anal fissure was back last week but is healing. The incision from the tumor removal is healing, as are my sore muscles from scraping the tumor from them, and I get the staples out on Tuesday. My memory is not good, I get ahead of myself when I write with a pen and miss letters constantly, making my writing look like a child's, I suffer from CRS (Can't Remember Shyt), and my memory is not good. Did I leave anything out? :

My PCP agreed with me that it could just be chronic pain, and he gave me a narcotic patch to wear. While we are still searching for answers, at least I may be able to function somewhat normally while being on a steady dose of drugs. We also discussed going to a larger medical facility to run more sophisticated tests, but wanted to see if the patches would help before we got going on something like that, so that I can have a more normal life in the interim. I'm to call him after Thanksgiving.

The patch will constipate me, so I have to have a high fiber diet and take stool softeners and laxatives. Joy.

There will be no skiing for me. I feel I should be cautious for a while. The fact that I cannot ski is sure not helping either. No matter how I felt, if I got on snow, I felt good all day. That magical elixir of health is not going to be there this year. I may get desperate and pretend to be new and stay on the learning slopes, but I know I wouldn't want to stay there and that's not smart at this point (just wearing the boot is agonizing). I hope the patch works, as I'm not suicidal and don't wish to be so. (Homicidal, sure. tee hee)

There it is. I hope this makes you feel better. If it doesn't, and you're in worse shape, then email me and I'll cheer YOU up! :

New Posts  All Forums:Forum Nav: