Re: thankful.....Coleen here, I added my 2 cents :)

[Guest guest]

Coleen,

I'm overwhelmed just reading your posting. No wonder you're at wit's end.

Getting to that level of pain is one of my greatest fears. I'm heading to a 3

week out-patient Chronic Pain Clinic program at Mayo. I'll try to post a

summary of it each weekend But if not, I'll do a total summary towards the end

of March when it is over.

As far as concrete suggestions:

1. Get in to see your doctor, not the nurse practitioner. Either the nurse

practitioner doesn't understand how badly you're hurting or s/he doesn't care.

Either way, s/he isn't doing you any good.

2. Make sure you write up a list with 2 sections. First, list everything

that's going on. Pretend this is a new doctor who knows nothing about you.

Second, list all your questions, such as what can be done to control the pain?

3. Make 3 copies of the list. One for you, one for your fiance (see the next

point), and one for your doctor.

4. Be sure your fiance comes with you to all doctor's appointments. His role

is: a) to make sure you hit on all points, add comments as needed to help

explain the level of pain or limitations in function, c) to make sure you get to

ask all your questions and d) to add any additional questions he can think of.

5. On the list of questions should be: Would you be willing to make a referral

to a pain specialist? Would you be willing to make a referral to a physical

therapist? If the answer to either of those is no, then you need to get a new

doctor. If they won't let you change doctors, then have your fiance call up to

speak to the director. He should be able to convince the director that it is

easier to give you a new doctor than to deal with your fiance.

6. Include the question: What can we do about the depression? Discuss how

you're at your wits end and if you're having any suicidal thoughts. If you are

suicidal right now, you need to see a doctor right now.

7. Does sitting upright hurt? Or is it the pressure on your hip? If the

latter, does sitting on a pillow or an air cushion help? My mother found the

handicap carts very uncomfortable but her own wheelchair comfortable. You may

want to ask about getting your own wheelchair with an adjustable back so you can

lay back as needed.

8. Ask the doctor about the Tylenol. I had a prescription for a high dosage of

Tylenol 3x/daily for almost a year to control some idiopathic swelling I had. I

didn't have any side effects, but that doesn't mean you won't. If the Tylenol

is giving you relief, then your doctor will want to take it into account.

9. Extended riding in the car hurts me. To go to Mayo (11+ hrs of driving), I

am going try something new. In the back seat, set up an double high air

mattress & cover it with an egg-foam mattress pad. That will give me somewhere

to lay down and kill the vibrations of the road. You might find it helps by

keeping the pressure off the hip until you get to the doctor's or store.

10. Mayo says to be doing some daily physical exercise or the muscles will

atrophy and that makes everything more difficult to do. A physical therapist

will work with you to create a do-able exercise program that will build on the

strengths you do have. It might all be in-bed exercises that will start

building on the strengths you have.

Hang in there. I'll be thinking about you. If you'd like I'd be happy to

review your questions with you or support you outside of this group. Just email

me directly.

Coleen wrote:

> I know how you feeling. I am now 47 yo and when I do send out an email about

something and usually about my woes, I get all choked up when I get replies. I

choke up and can't stop the tears from flowing.

[Guest guest]

hi ,

Thank you for the reply.  I will try to answer/talk with you later.

I am just beat.  Think I am just stressed out/can't sleep.  I can't control my

life and I don't know what to do at the moment.  I will figure things out

though. 

for now, thanks and hugs,

Coleen

  wrote:

I'm overwhelmed just reading your posting.  No wonder you're at wit's end.