Re:What a rough road!!!!!

[Guest guest]

Thank you Donna for responding to a very desperate e-mail. I can only look

back and say, " I made it through another round, and how many more rounds can I

keep going? " I plan on fighting many, as so many others have to. After

Thanksgiving I started to question if my Hickman was infected. I had high fevers

and

it took the 103.9 to get some testing done. It turned out the Hickman was

infected and I was put on some heavy antibiotics. I started to feel better, then

I

took a turn for the worst. The antibiotics turned on me and I started an

allergic response. That was the beginning of the week of Christmas. Blood was

drawn, and my blood was showing that I was allergic to it and by getting off of

it

I would start feeling better. It was too late! I went down hill so fast that

by 12-24 I was dilerious. I couldn't take care of myself and I certainly

couldn't care of giving myself meds.. Off to the hospital I went, I had

excellent

care, pain control was excellent and the antibiotics of another strain were

finally working. I knew I was exhausted from fighting the pain, but put the in

fection on that too and I was not in a healthy place. I am seeing a new pain Doc

now who is not afraid of narcotics and I just had my morphine pump changed

over to didlaudid. I know that I was having a reaction from the morphine. The

pump just did not feel right. I have not been happy with this pump since it was

put in sometime in Oct. I asked the DR's over and over if they thought I could

be allergic too the morphine and they all replied no. I believe they were

wrong.

OK, what have I learned from this nightmare. It is very important to have

HOPE. 2. It is also imperative that one can advocate for themselves, and to

not feel guilty because one needs pain med. to exist. I have found the

untrained Dr.'s in pain do not understand the importance of narcotics, and are

very

quick to under prescribe the pain meds.. I know I need to build my self-esteem

in that department. I am too quick to live in pain and suffer until I am at a

point that the pain is too far ahead of me. 3. Finally, I have come to realize

that I wanted to hear the word cure so badly. When it comes to this disease

the word " cure " is not one that happens often, but what I can deal with is

quality of life and that is what I am fighting for and need. That is what I need

to

give to me time with my children.With that in mind, hopefully I will fight

harder and not let guilt get the best of me. I thank you Donna for responding

to my e-mail. I was in so much pain in my heart and in my body. I know there

are going to be more mountains I am going to have to climb, but as I climb

those mountains I know I have a wonderful support system in this group, and I am

loved by many people. Isn't that what it's about, love and fighting a very

cruel monster?

PS Cecilia I hope to get in touch with you soon.

Thank you again all my support to those that may be fighting the giant today

Paget