I haven't posted for awhile because things WERE better

[Guest guest]

Hi, this is Atwell, I haven't posted for awhile. I had the

intrathecal pump place 8-21-03 and had to have IV steroids after

because the Dr.stated he must have touched the L-4 nerve root

ganglion. I did very well until exactly a year after, I had to have

a few pump bump ups but managed pretty well on the pump and my

actiq. During the summer I noticed I was running a fever and every

test was done to see if I had an autoimmune disease as my back was

just killing me. I had seen my pain Dr. many times for pump bump ups

and one time he had me like a zombie I could feel nothing, I was so

intoxicated I could not do anything it was worse than being sick, I

made them take it back down. I started to noticed, that everytime I

put something either food or water or any other liquid ( not

alcohol) I have increased pain, and my abd would swell huge, like I

was pregnant. After consuming anything but coffe I would be in

misery, my family Dr. was monitoring the temp increase, and just

luckly I had a routine appointment one day when I had eatten an egg,

sometimes I would forget just how bad it would hurt, and accidently

eat, because I was starving. It took 4 actiq and 10 mg of valium to

get me to this routine Dr. visit, I was honest with the family Dr.

about what it was taking to get me comfortable, and had been telling

the pain Dr. something was wrong, that I was waking again in the noc

screaming his reply " Do you want a sleeping pill " my reply was no I

want to know why. Now it all makes perfect sense. I finally talked

the primary care Dr. into doing a plain back x-ray. I now have

profound degenerative disc disease. Big surprise. My husband works

with my pain management Dr. in surgery and was telling him how

little I eat, I hid it from him for along time, and how bad I was

doing and even asked him if TPN would help he said TPN was like

shooting a misquito with a cannon. I had told this Dr. how concerned

I was about the amount of break thru pain meds it was taking to keep

me comfortable and as a wife and mother I have things I have to do.

My husband went to pick up my actiq RX and the pharmamcist accused

us of selling them, started yelling and saying " I know what the 2 of

you are doing and I am calling the Drs. and the police " The pain Dr.

gets 8 weeks vacation a year and takes them the policy is if he is

away the primary Dr. gives the RX. The whole thing is they have

taken my actiq away now. I know that it has to do with the price. I

was put on a liquid morphine that does not help. I have been almost

bed fast for the last 10 days. This med does not help at all, I am

to have an MRCP today as I was referred to Methodist and saw a G.I.

a few weeks ago. I have been documenting the doseages and what I

have taken them for, and that they are not helping at all. I had

been on the actiq for over 5 years, and now he says the

pharmaceutical manufacturer came out with a statement earlier in the

year that if you have non-cancer patients to get them off the actiq

because it is the oxycontin of yesteryear. Is this my fault? I have

malabsortive syndrome and nothing eles works, I only get the side

effects. Since this change I have not been able to bathe myself I

have not been able to grocery shop or do anything. He has sunk his

heels in and will not give it back to me. I know it has to do with

the pharmacy at my husbands work, no one is stupid enough to tell

it, but when I opened the bottle of Roxanol and saw it was $8.10 I

knew. The bottle of liquid were 30ml each and the order was 1ml

every 2-4 hours which I used something like 9 doses a day similar to

the actiq. It lasted 6 days I called for another and my

husband told him it was not helping as he had to pick it up for me,

he changed the order to 1-2 ml every 2-4 hours I was taking 1.25

mls. On Friday I did not think there would be enough to make it over

the week end and I didn't want an ER visit ( I used to work there)

my husband and I with a walker went to pick it up the bottle was

much bigger, but the frequency and dose was changed again, back down

to 1ml every 4-6 hours. This man is playing a game, and I am not

playing it. He is a pain management Dr. but also an ansethesia Dr.

constantly pulled between his clinic and surgery. My actiq RX would

sometimes say 1-2 every 4-6 sometimes 1 every 12-16. Which I can

honestly say I have never in 9 years of this disease process ever

been able to go 12-16 hours with out breakthru pain meds. After we

got this bottle filled I made an appointment for today with my

family Dr. he and I have discussed before how if Actiq helps people

then they should have it and what a profound difference it makes in

me, he is not aware of any of this except how the pharmacists acted

and he was not called, he has no questions about my pancreatitis and

can't understand why every where I go they want to try to dispute

it. I know that if he writes an actiq order the pharmacy at my

husband work will NOT fill it, because of the price. At this time I

am in dire need of home care and probably IV fluids. If I can't have

the med back I am asking for nursing home placement as I can't do

anything for myself, and am a burden to my family. I know the MRCP

will show there is an obstruction there, but I have already been

told with my annular pancreas there is nothing that can be done. I

am still running a low grade temp and have been since June. The only

blessing in this is I see how sick I am really am and that the actiq

had kept me in denial, and my family had taken advantage of me

requiring too much of me. As women we just suck up and do it. I have

not done any laundry since this med had been removed and honestly I

have taken one bath since then. I have rarely combed my hair as I

hurt to bad. I am going to file a report with the state attorney

general over the pharmacist and his mouth after this MRCP as I need

it to prove my point. I may also seek litagation over his tortous,

slanderous and malicous mouth, isn't that what they pay malpratice

insurance for. I know that if I had ever treated a patient that way,

I would have been terminted on the spot. They are even protecting

him, we asked the next day what his last name was and we were told

they aren't allowed to say. When we discussed this with the pain Dr.

we asked for urine drug screens for both of us, he said they weren't

necessary I said I want one anyway, he would not do them. I

understand that we are difficult patients to care for but if our Drs

that we sign contracts with aren't willing to stand up for us than

who will. I plan on firing this one today. I need him to shut the

pump down prior to the MRCP and turn it back on and I am scheduled

for a fill today, as far as I am concerned Medtronics needs to take

away his ability to implant these things. My husband is worried that

he will loose his job if I cause too much trouble. My issue is that

pain Drs. have a responsiblity to provide adequate pain control and

that is not happening and then the games with the doses. I was just

wondering if anyone here has been taken off their actiq because of

this supposed warning by the maker? I have a friend that is on

medicaid and was taken off all of her expensive meds to less cheaper

ones once she went on medicaid. I know there are some of you out

there on Hoosier health wise or the other medicaid equal and were on

actiq have they taken it away from you? I am no different than

anyone eles, I just want to be productive and do what it is that I

need to do. I thought this pump was so wonderful and it wasn't what

was helping it was the steroids I recieved after and the Advil I was

taking for my temp, but honestly I can't consume enough fluid to

take the advil anymore and I am not going through dialysis, so I

have had to stop it, and the actiq that was what was keeping me

going. I will post again as soon as I know something.

Atwell LPN

[Guest guest]

Dear :

I remember you and wondered how you were doing. So sorry it's not

good. I remember you mentioning the conflict with your husband's job

in jeopardy if you complain about poor healthcare and thinking what an

awful situation.

I don't have your address, so I can't send a card, which I would like

to do. I cheer myself up by spending time in the aisle at the

Hallmark Shop reading funny cards and I usually have a supply on hand

to mail out. It's not much real help, but at least you know

somebody's thinking of you and cares.

Having had this disease for so long, you must know there are times

when its bad and times when it gets better. Hang in there.

But feel free to " let it all out " here on the board when you need some

sympathy and support.

Thinking of you tonight and hoping tomorrow is better.

Aloha,

in Hawaii