To Anne R.

[Guest guest]

Anne,

I sure wish they could find a way to make you more comfortable.  It's impossible

to live with so much pain and doctors know that pain causes health problems. 

I have a horrible memory so can't remember if there's pain meds that would help

you or not.  Patches ?

You deserve to be treated with dignity and compassion.  I pray for the day when

you don't suffer.

Love,

Jennette

[Guest guest]

To my knowledge I can have IV Fentanyl (not the patches because the

adhesive I am allergic to) or possibly something called Nucynta which very

few people have heard of let alone are willing to write a Rx for.

So I don't have a lot of choices at the moment. No one is going to let me

access my own port (and really I do NOT want to) and push meds straight

into my heart, and I don't know if a home care company would even take that

responsibility of giving me PRN IV narcotics, especially since the home

care companies I use the drugs come from one place, and the RNs come from

another. Which would mean I would have to have it on hand for the nurses

to be able to give it to me. The likelihood of any doctor letting me do

this is pretty much like a snowball staying frozen in Hell.

The 1st time I went to the MAPS pain clinic here in Fridley I was seen by a

rude nurse practioner and really nice doctor who is both a neurologist and

an anesthesiologist. He tried me on Neurotin & Methadone which both landed

me in the ER, but really I knew the risks when he wrote the Rx.

Unfortunately when I went back for my follow up appointment he has moved to

another location.

So Wednesday morning I am going to drive to the location he is at now

because he was at least willing to TRY to help me knowing that I could have

an allergic reaction at any point to anything. The location I am going to

is inside or attached to North Memorial Medical Center (a Level One Trauma

Center that made national news about 20 years ago when they successfully

reattached a North Dakota mans arms after they had been ripped off by a

piece of farm equipment.)

The witchy Nurse Practioner and her current doctor who NEVER even came in a

saw my face are only interested in possibly putting a fentanyl pump in

me... this idea scares the crap out of me because for all I know, it is the

LAST drug I can have for pain so I would worry that I will become tolerant

of the drug, or react to the pump implanted in my body, or become allergic

to the pain medication itself. Everyone (doctors & nurses) I have told

about it have agreed with me that it would be like playing Russian roulette

with my life and really, I do that enough as it is with stuff around me, I

don't really need the bullet implanted inside me.

Plus with MRIs being the only way they can track if the AVN is progressing

I don't want anything to get in the way of that being able to be done. For

the rest of the world it can also be tracked through bone scans but against

what every bone scan tech has told me... it is NOT impossible to be

allergic to the radioactive tracer they inject into me. And it is the same

radioactive tracer that they use for cardiac stress tests so any heart

problems I have in the future, I will have to go to the Heart Cath Lab for

I am guessing.

1st bone scan:

I broke out in hives and the woman said that it was IMPOSSIBLE to be

allergic to that so she wouldn't even get me my purse so I could take some

benadryl let alone call a doctor to evaluate me.

1st cardiac stress test:

I had to be pre-medicated with IV Benadryl before I would let them inject

me with the dye stuff, and I itched head to toe, took more benadryl, ended

up having to take epinephrine which really screwed up their testing since

it made my heart fly!

2nd Bone Scan:

I refused unless I got IV Benadryl before the injection, so I had to come

back and talk to a radiologist who yelled at the tech, and then we

rescheduled the bone scan for another day with an RN that would be there

with me the entire time... THANK GOD FOR SMALL MIRACLES. That they finally

took me seriously because they gave the IV Benadryl 50mg, waited a couple

of minutes then injected the radioactive tracer and within 10 minutes they

were breaking open the crash cart and calling a code (with a look of " I

told you so " on my face for the stupid tech). So you have to have the

tracer in your system for 3 hours before they can do the scans, I spent

those 3 hours in the ER with them trying to break the anaphylactic reaction

that they caused, then with my nurse in tow, I went back to radiology and

they scanned my body from head to toe because they knew this was going to

be the VERY LAST time that stupid crap would be going into my system ever!

I am set up for bilateral shoulder and hip MRIs to be done at the Univ of

Minnesota hospital (actually the side of the hospital that I used to work

in) on Monday to see if I have AVN there too.

I am seriously hoping that the " good " pain doctor will have some other

ideas for me on Wednesday so I don't have to rely on valium and antivan to

knock me out at night so I go to sleep because otherwise the pain keeps me

up all night long.

I am getting really tired of doctors and all the games they play, they say

one thing to your face and then go type the complete opposite into your

chart. Hopefully I am almost done weeding out those doctors from my care

plan..

Well my bed time meds seem to have made me sleepy so I am off to try to get

some sleep before I have to get my daughter up for school tomorrow.

Talk to you again soon!

Anne

Jennette wrote:

> Anne,

>

> I sure wish they could find a way to make you more comfortable. It's

> impossible to live with so much pain and doctors know that pain causes

> health problems.

>