New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 8/23/2008 7:39 PM (GMT -7)   
Hi All:

I've been lurking here on your CP forum for a couple of weeks. I wanted to introduce myself to you all. I'm Barbara and I'm normally on the lupus forum. I've had lupus for 20 years the past 7 years have been really hard. In 2004 I took a medication that had the potential to cause lymphoma or leukemia it was a 4% chance. Well I've got the worse darn luck. I've now got leukemia in addition to my Lupus, and of course I also have Rheumatoid Arthritis and Fibromyalgia. Needless to say I suffer from serious pain. I'm rarely below a 5 out 10 on the pain scale. Most days I go to bed at an 8 out of 10.

I'm on oxycontin twice a day and take demerol for break through pain. I get blood transfusions every 8 weeks or so. I'm currently waiting for my doctors to say it's time to do a bone marrow transplant to try to cure the leukemia. Of course my lupus will complicate the transplant and at the present moment I stand only a 35% chance of living through the transplant. My doctors don't like those odds, so they are waiting until I'm so sick I'm gonna die anyway so then it will be worth the risk. We also need to find me a donor, I was adopted as a child and I have no blood relatives except my 15 yr old daughter. It's been recommended that I do not put her in a position of hoping that she's a match, or if she's a match and I die, according to people who have donated for family the guilt is extreme, that she'll have to deal with I gave Mom my bone marrow and she died.

My question to you all, do you think that the oxycontin is a good choice of long acting pain killer? Is there sometimg else that would work better. I should say that I'm allergic to morphine and I can't take straight morphine. I'm reluctant to go up any higher on my oxy than I'm at. I was on a higher dose and my husband said I was totally wasted all the time. I want to be aware of what I'm doing, and yet I want to have good pain relief. Any suggestions would be greatly appreciated.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 8/23/2008 7:54 PM (GMT -7)   
Hi, Barbara. Welcome to the forum. I think we've met once before in the chat room, actually! I am sorry to hear of your leukemia. That just stinks!

I wonder, has your doctor ever considered a pain pump for you? I don't have one, but I've heard that they offer a good pain management option where you could get much higher concentrations of meds without the side effects because it takes smaller doses since they are delivered right to your spine. I know there are probably draw backs to the pump as well, but it might be something to at least talk about with your doc.

Ry

sunflower7
Regular Member


Date Joined Jul 2008
Total Posts : 75
   Posted 8/23/2008 9:55 PM (GMT -7)   
Hi Barbara
I remember you well! ! !
We used to "chat" in the chat room.
I was gagabonnie then.
Have not been in there in ages.
You are such a strong womyn, as I '
know you have been suffering a long time
and still keep on keepin on! !
Welcome
Bonnie

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 8/23/2008 11:22 PM (GMT -7)   

Hey everyone,  Barbara Lee is my best friend on Healing Well.  She is the strongest most admirable woman there is.  Barbara I'm glad you posted here.  You are so welcome to this forum.  I'd love for you to get to know the regulars here and have them help you and have them learn from you as I have. sad

To answer your question, I have tried oxycontin and morphine and neither one did me much good.  Have you tried the fentenyl patches??  I'm sure someone with more experience will come along and have a decent discussion with you, better than I have done. idea

Just wanted to welcome you, Barbara.

Love,

Linda turn

 


Moderator Chronic Pain
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 8/24/2008 9:33 AM (GMT -7)   
Hi Ry, Tiggers, and Linda:

Thanks all for your welcome. Linda you're way way to sweet about me. I think the world of you my friend and I thank you for saying hello to me and the nice welcome to your forum.

I've tried the Fentenyl patches but it caused a severe rash over the skin where the patch was put. The rash was so bad that I've got a square scar on my back where the patch sat. So no Fentenyl for me. I'm very intolerant to most pain medication so it has been a problem for my doctors to deal with. I can IV Fentenyl but only if I have IV benadryl with it. about the only pain med I can take is Demerol w/o any side effects.

Hopefully, someone here will have some good advice for me. Again, thanks for welcoming me to your forum and I'm so glad I met you all.

Hugs,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 8/24/2008 9:36 AM (GMT -7)   
Hi Barbara welcome to the HW forum. I really have not much else to say (that is amazing for me) but I do hope that you have a lessened pain day.


Scarred
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/24/2008 10:53 AM (GMT -7)   
Hi, Barbara,
I also wanted to welcome you to the CP forum. I tried writing you yesterday and got bumped off as I went to send my reply. Hope this one makes it! I'll keep it short, as I'm not sure I have much to add right now about pain meds. I've not yet started on the longer acting ones, although that's likely in my future.

I am so sorry for all your challenges. One thing I would say is to make sure you're getting the best pain management you can find - and maybe even get a second opinion from someone who works with more complex cases. Please dont' take this wrong, but hospice physicians are very skilled at mixing pain meds, and I wonder if a consult with one might help. And I realize you don't NEED hospice!! Gosh, this sounds awful....I'm not sure I should even write it, but it's just a thought. I hope it doesn't hurt more than it helps!

Are you involved with a comprehensive pain management clinic now?

I also want to say there's always new developments on the horizon, so keep the faith!

PaLady

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 8/25/2008 6:19 AM (GMT -7)   
PaLady,

I think that was an excellent suggestion. You are right. Hospice physicians are very trained at pain management. You are always so smart!!

Lindaloo yeah
Moderator Chronic Pain
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/25/2008 8:39 AM (GMT -7)   
Linda,
Thank you for the kind words. By the way, we're waiting for you at the Beach Party! And Barbara, you're more than welcome to join in! It's a bit wacky, but some of us are finding it a fun distraction from our pain and problems - even if for only some brief moments.

PaLady

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 8/25/2008 9:58 AM (GMT -7)   
Hi PaLady and Linda:

First off PaLady please don't feel funny about mentioning Hospice to me. I'm not offended in the least. I know currently I'm not ready for Hospice care yet (thank goodness) but I do know that if I don't get my bone marrow transplant I'll probably reach a state that I will need them. I know when they cared for my Mom they were giving her oral morphine every 4 hrs. I'll give the local Hospice chapter a call and see if they have and suggestions.

Linda my dear friend thanks for answering PaLady for me and I know that with your experience you know which kind of doctors are the best to talk to. I value your opinion a lot. Thanks my friend I appreciate all that the do for me.

I'll have to check out the beach party. I love anything that can take my mind off the terrible pain I'm having. The only time I'm not in pain is when I'm sleeping, so I sleep a lot, of course part of why I sleep so much is my anemia causes me to sleep. My bone marrow doesn't make enough red blood cells so my H/H is usually around 9/15 when I get down to 8/12 I usually get 2 units of blood transfused into me. I usually feel so good for a few days afterwards, I sometimes wonder what would happen if the took all my blood out of my body and gave me new blood. Anyway, I'll stop by your beach party and join in the fun. PaLady thanks for your suggestion I hadn't thought about seeing a Hospice doctor.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


kara487
Veteran Member


Date Joined Mar 2008
Total Posts : 637
   Posted 8/25/2008 2:46 PM (GMT -7)   
Hi Barb,Welcome to HW.
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 04, 2016 11:27 AM (GMT -7)
There are a total of 2,732,613 posts in 301,037 threads.
View Active Threads


Who's Online
This forum has 151196 registered members. Please welcome our newest member, RAmiddleage55.
282 Guest(s), 13 Registered Member(s) are currently online.  Details
PDL17, Gemlin, 142, Faustmann, ASAdvocate, Denikeef, Fairwind, ChickenArise, Tim Tam, RAmiddleage55, sharron19, Tall Allen, Kristvet86


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer