Chronnies Chatter Newsletter

From 1988 to 2001, I worked for different docs. One of life's little twists
led to the last doc I worked for, who also happened to be my GI guy. Along
the way, I have seen many different behaviors by patients and staff alike,
and some amazing interactions. Some of what I've experienced may be helpful
to some. I had intended to make it to the "be your own advocate" chat to
share some of this, but was too late getting there. So, take this
information and do with it what you will--I hope it helps someone. Warning:
This is general, sometimes brutally honest information, intended to help.
It is not meant to step on anyone's toes.

Things to do to win over the staff (and the doc):
1. Keep your appointments. If unable to keep, call and let them know.
They set aside time for you, and when you don't show, it costs money and
keeps a sicker person from being able to get help (you may have been refused
treatment one day because someone else pulled a "no-show").

2. If you can't keep the scheduled appointment, make another one fairly
close to the same time. This shows that you intend to comply with your
treatment and want to be an active participant in your care. Many times
prescriptions are written to run out around your next appointment. When you
don't follow that schedule, you could end up without your medicine, or
having to wait hours at the pharmacy while they wait for the doc's office to
call in a refill.

3. Prior to your appointment, check your supply of ALL meds and take a note
with you so you won't forget which things you will need refills of before
the next appointment after that. I can't tell you how many people come in
for their appointment, then about 2 hours later, the drug store calls and
says that person is there and out of refills. This wastes everyone's
time--yours, theirs, and the pharmacist's.

4. Ok, there's a question on ethics on this one, so I can only call it as I
see it. I have confessed on the boards to taking a break from my meds. I
DO NOT recommend this. I only admit to it to comfort someone who is feeling
guilty for having done the same thing. I think we've all done it, but
please know if you have never done that and decide to try it you are doing
it against everyone's advise and at your own risk.

So how does that relate to getting what you want from the staff/doc? Well,
we had some "high need" patients whose high need stemmed mainly from wanting
narcotics. They'd come in all pitiful, say they've followed all
instructions, but are still in TERRIBLE pain. Trouble with that on the
drug-seekers was that a simple call to the pharmacy to request their refill
history would reveal that the only meds they were filling were pain
meds--they weren't filling the things that would keep them pain-free due to
improved health.

So, keep up with how many pills you SHOULD have, and request refills
appropriately. Otherwise, for right or wrong, you may look like a
drug-seeking and mostly non-compliant patient. This will ultimately result
in your being denied pain relief when you REALLY need it. It has also led
to the termination by the doc of the doctor-patient relationship because he
can't be held responsible for your health if you aren't following his
directions.
I probably shouldn't have gotten into that, but it will hopefully help more
people than it gets into trouble.

5. Don't complain about every little sniffle and hangnail. All the world
dreads a hypochondriac. When everything is a big problem, it makes it
harder to take care of a really big problem. Ever hear the story about the
little boy who cried "Wolf!"? It's sort of like that. They don't doubt
that the hangnail hurts, but it's not an emergency. Chest pain, projectile
vomiting the breakfast you ate when you were 5 years old, or prolonged
bleeding from anywhere are emergencies. And if you get a new medicine
accompanied by information about the medicine, don't call back with one of
the side effects from having driven home with it on the seat next to you.
If you have mild side-effects, remember this is often normal at first, and
your body will adjust a lot of times. So don't call your doc in a panic,
but do call when you start to notice a negative event to let them know so
they can evaluate what needs to be done for you. Of course, if your
reaction is major, like shortness of breath, sudden severe headache, rash,
numbness, pain, etc., don't pass GO and don't stop for the $200--call the
office immediately! They may not make any changes right away, but they need
to know what's going on with you.

6. About your bill...Most docs are good guys and understand when you can't
pay in full. Some are the orifice where the colonoscope goes, too. So here
are the tricks to dealing with money...
   a. In most cases, your insurance contract is with your insurance, not
the doctor. Ultimately, the whole bill is your responsibility. If you see
a problem, point it out as soon as possible. Staff will usually take care
of it for you once you let them know. Sometimes it's beyond their control.
At that point, keep in touch with the doc's office, but stay on your
insurance company until they snap to.
   b. If you can't pay in full, pay what you can while you are there and
offer to commit to monthly payments. If money is tight, don't fret. Set
the payment to $5 or $10 per month. Pay more as able, and if a problem
comes up that you can't pay at all one or two months, it's ok as long as you
call and let them know. Communication is the key. As long as you show you
care, they will work with you til the cows come home (remember, I'm in
Mississippi, so forgive me if the southerner in me comes out.)
   c. If you can't afford your medicine, tell your doc. Ask if he has any
samples, and if he works with the drug companies to get free meds for
patients who can't afford them. He can't help you get well if you hide this
information from him.
   d. If you can't buy meds and can't pay much on your bill, don't go in
dressed to the teeth and dripping diamonds (try to avoid showing up in the
new Cadillac, too, especially if the doc is still driving his '87 Toyota.)
No explanation needed on this one, other than to say that at the very least,
it would be in poor taste.
   e. Just be upfront and show interest in doing your part. You may not
think your $5.00 monthly payment counts, but if all of the non-paying
patients would start sending in that little payment every month, it would
really go a long way.

7. About bringing others with you...If you have 6 children,
congratulations, but try to make arrangements for a sitter during your
appointment. They are wonderful, but it's not fair to put them in the
clinic and expect them to stay out of trouble during the frequently long
stays. They get bored, they get hungry, they get cranky, etc. It's also
not fair to the staff, and it's especially rude to the others in the waiting
room who are already stressed enough over not feeling well. If you are
severely ill, or may require meds that keep you from driving, by all means,
PLEASE bring someone with you. You'll appreciate the company, and if you
don't feel well enough to catch every little detail the doc/nurse tells you,
you'll have a spare set of ears. Plus a driver if you aren't able. The
staff is always relieved to see someone with help/support when needed. It
helps cut down on the worry factor, and yes, the staff does worry about you
when you're sick, even after you leave the clinic. At the last clinic I
worked in, we would ride over to a patient's home to see how they were
doing, take them another shot if they needed it, visit them in the hospital
after hours, went to the store and bought underwear for a man who didn't
expect a hospital admission, hadn't packed anything, and whose family didn't
take care of him, etc. You matter very, very much to the staff, so if you
have another person to help you, we salute that person, and wish everyone
else had the same support.

8. Not that anyone here would ever do this, but it's really a funny story.
We had a lady in the clinic one afternoon with "emergent" symptoms of a
urinary infection. First thing we need is a urine specimen. So, she wanted
a nurse to come in and unzip her pants and help her out of them because her
nails were wet, fresh from the salon. I didn't ask about the toilet paper
ritual afterward...

9. If you have a problem bad enough to call to request being worked in,
don't wait until 4:30 or after to show up. You've had all day, and it
didn't just come up within the last few minutes (unless it's due to a sudden
injury.) Exceptions to negative response from the staff are made for those
whose employers will not let them leave earlier to go to the doc, or other
factors beyond patient control.

10. If the bathroom is getting low of tissue or paper towels, or is
otherwise in need of attention, please let the nurse know. Staff tries to
keep a watch, but during busy hours, that's something that may get missed.

11. If you have to wait a while, try to be patient. They don't mean to
keep you waiting. Sometimes, there are hospital emergency cases, or another
patient is extremely ill and has to be worked in for ASAP care. Yes, you
had an appointment weeks before they called, but that emergency work-in
could be you one day. When they do call you back, you will still get your
same time/attention.

12. Say "Thank You" to the girl at the desk, on the phone, filing
insurance, in the lab, your nurses, and the doctor. Those are 2 small
words, but trust me--they are a welcome boost to hear anytime. Hard to
imagine, but your "thank you" may be the first one they'll have heard all
day. Watch their faces light up. Then realize how, if only for a moment,
that made YOU feel the teensiest bit better. (If you're extremely happy, or
they did something extra-helpful, a card in the mail is always a bonus. We
used to keep them posted in the nurses' station and re-read them for
encouragement on bad days. And if you happen to bake and want to
share...lol!)

I hope this helps some of you. Sometimes you can do all the right things,
and still be treated poorly or rudely. When that happens, unless it's a
rare occasion, start shopping for a new clinic. You deserve to be treated
with kindness and respect, and let's face it, sometimes the staff is just
bitchy :) I'll be glad to answer any questions, etc.--just let me know.
I'm sure I left something out, and if a particular situation has come up
that I didn't address, please let me know, and I'll try to help. Remember
that in addition to working for docs for a long time, I've been a patient
even longer, so I'm on your side, but with an inside view of the other side.

Rule number one: Be good to yourself.
Take care,
Lee Ann

Note from Debbie:

I want to thank those who have contributed to the continued battle against Pop-up Ads on our messageboard. We have 2 more days to donate, for those that have, thank you very much. If you can, please do. It is everyone's board and I hope you have enjoyed have no pop-up ads in the past.

Time calculator/conversion

http://www.timeanddate.com/ Thanks to Tori

Here is a place where you can order official records, like birth, death, marriage, divorce records on line. I really needed this one myself!!!

http://www.vitalcheknetwork.com

Vital Record Services---- The benchmark of VitalChek’s business operations has always been, and will continue to be our ability to link Americans with the state, county or city agencies which house their personal vital records- specifically, certified copies of birth, death, marriage and divorce certificates.
Costs for most records is $15.00 each, plus shipping

Caz's Board - Here is a great place to get support and information - she takes a special interest in you as a person and her board reflects her personality which is very kind and caring http://members4.boardhost.com/CrohnsChat/ she also has a singles page!!!

BIRTHDAY BABIES:

AUGUST

01 – Barb – Barbbeau

16 – Doreen – DC714

It is our policy NOT to give out Email addresses, unless the person specifically says it is ok, your mail is forwarded unread to that person.

Catching up with Judy from Rochester - aka Jude

Not sure I told you since my Sept resections/strictureplastys that I've had this pelvic pain that they initially thought was an infection from the catheter. After two or three doses of cipro I finally went to my GYN who said because of the surgery, (he did three ultrasounds, one every two or three months since November) he could see fluid build up and an adhesion (already!!), not to mention fibroids that I already knew I had. So he said we'd watch this and he even put me on the pill as the periods were so bad and the pain was so much worse I think because it swelled down there so I was on the pill continuously for three or four months(so I wouldn't get one). Said I wasn't menopausal yet but I must be perimenopausal (just turned 48!). So being on the pill helped the pain so much but he wanted me to go off of it, even though the fluid looks like there may be more there. So I went off of it, the first month was bad, but last month, I was in agony! Plus I had this brown (stool colored for sure but no odor) discharge, so I was convinced I had a fistula from all of this...went to my GYN, the discharge was cultured, came back "normal", went back on the pill, pain subsided within a week but I can't be on this forever. My GYN said if I was a "normal" patient, he would have no trouble going in there laproscopically and get the adhesion and fluid out but because of the extensive surgery I've had, he WOULDN'T DARE go in! So I'm between a rock and a hard place. Looks like if I ever get this taken care of I will have to go back to Cleveland and my HMO says I better not! I don't really want anyone to touch me here after how bad that surgery was (if you recall, the surgeon at Cleveland Clinic said I was one of the worst cases he's ever seen and this is all he does). And on top of that, because of the worst winter ever (I'm talking about the changes from day to day) the fibromyalgia has been so painful too so it hasn't been a good few months here. Though I do have to say the CD is much better since the surgery, it's all the other stuff that resulted in it, that is killing me! Sorry so long but that's it. I probably wouldn't know anyone in the chat room anymore. I'm still on the oxycodone four times a day, no patches and I should have increased during my worst time but I still remember coming out of surgery with no pain relief due to my tolerance...something I will never forget, like being cut all over the place with no pain killers and it took hours for them to take the edge off...I remember it all! So I keep thinking if I need emergency surgery soon because of this new problem I sure don't ever want that to happen as I wanted to die on that table. I know you know what kind of pain that is so! I've been using ice packs, heating pads, etc. So I stay on the pill till July and have another ultrasound and see what he says. If you go to Caz's board, she emailed me that she just posted this long article about the problems with crohn's and GYN problems...you should read it! Never knew what crohn's can do to our female organs and most doctors don't realize it (as usual). We have so many problems that all stem from crohn's....have to take it day by day...you take care.

Notes about catching up:

Please make sure we are both clear - you and I - that when I ask for a "Catching Up" Article that it is for publication in our newsletter. It is different than asking for a personal note about how you are doing. I don't want to print something that you might want to keep private. Thanks for your help and please keep the articles and notes coming in - they are a wonderful way to keep in touch with everyone when you can't get to the chats or you want to get some information out!

Keep your eyes peeled for new pictures that are coming in - Sandra posts them as soon as we get em'. Thanks very much! (Sandra's note: click the Photo Gallery Link at the bottom of this page!)

Funny police jokes from "Kat":

Funny Police Quotes

"The handcuffs are tight because they're new. They'll stretch
out after you wear them awhile."

"If you run, you'll only go to jail tired."

"So, you don't know how fast you were going. I guess that means
I can write anything I want on the ticket, huh?"

"Yes sir, you can talk to the shift supervisor, but I don't think
it will help. Oh, did I mention that I am the shift supervisor?"

"Warning! You want a warning? O.K., I'm warning you not to do
that again or I'll give you another ticket."

"The answer to this last question will determine whether you
are drunk or not. Was Mickey Mouse a cat or dog?"

"Yeah, we have a quota. Two more tickets and my wife gets
a toaster oven."

"No sir, we don't have quotas anymore. We used to have quotas,
but now we're allowed to write as many tickets as we want."

"In God we trust, all others are suspects."

Thanks to Jean and Tori for their help this month - it would not have gone out without you!

Sandra has graciously consented to update any pics that we want - how we have changed or not ;). I know we are all very grateful to her for her skills and dedication in getting the newsletter up and doing such an excellent job maintaining it. Thanks very much!