Chronic Pain

My daughter, age 32, has been in pain for so long now I think she is giving up. Morphine, methadone, failed surgeries, anti-depressants, infections, PAIN, PAIN, PAIN. How can I help her-when I see what it is doing to her, too hard. Things have to get better, but they don't. Tell me what to say to her today!!!!!!!!!!!

Hi Jan,

My heart goes out to you and your daughter. I know how difficult it is to watch your child suffer and feel helpless to do anything. I had to watch my 33 year old son go through two years of horribly painful and debilitating treatments for stage 3 melanoma, with no idea whether they would even help. I think the thing that kept him going was his great desire and determination to be there for his wife and three children.

I don't know anything about your daughter's circumstances, but one of the strongest motivators for me and many others is knowing how much their loved ones need and love them. When the seemingly unending pain seems too much, I try to think of how devastated my children would be if anything happened to me and that gives me strength to hang on and continue to fight.

We all need to feel that we serve a purpose in life and that someone needs us. Maybe if you could help her remember why she and her life are important, it would help her hang on.

I don't know the cause of her pain, but there is always hope for improvement. If I'd given up back when I thought nothing would ever change, I'd have missed so much. And eventually I did find a combination of treatments that helped enough that I can function pretty well.

Finally, I don't know what yours or your daughter's spiritual beliefs are, but that was also an important factor for me. I'll be happy to share more about that with you if you want me to, but I won't impose my beliefs on you. I will, however, pray for both of you.

Please keep in touch and let us know how she is doing.

Jan

I'm really sorry about your daughter and would love to try and help you with some suggestions & support, I think I may of met you in a sharepost but don't recall what your daughters cause of her pain has come from.
If you don't mind going into a little more detail and letting us know about her pain, maybe we could offer some type of helpful suggestions.

I'm really sorry and I to know how awful and stressful it is to watch your child suffer.

Hope to hear from you soon again and my prayers are with you both.
Betty

I'm new here.. but, from the stand-point of someone who's in pain constantly, I can say, just being there helps so much more than any pill can! She's lucky to have someone who cares.. she really is...

I wish her all the best!

Harley L, I love your post about the speed and the bears. I am Linda and haven't been on for a while. The usual....nausea, pain, fatigue, spacey..... have kept me down and out for a couple of weeks now. I got a belly laugh out of the bear story. That always makes one feel better. It would be a strange sight painiacs persued by bears. LOL. I have been feeling low all day and then I read of someone elses problems and mine seem small in comparison to, say, Jan and her daughter. Thanks for listening and best of days to all. Linda

glad i can give someone a laugh...

Harley,
Ya, especially someone who needed it I read your introduction a minute ago. and I can sure relate to the family thing, even though I am much older it still hurts when my family doesn't believe there's anything wrong with me. Like just get up and act normal, or something. And of course since it was an accident with a horse, it's my own fault anyway.... I do, however, have a husband, a few friends, and my sons who do care and do believe me. That feeling that I get when I know people don't believe is awful. I was feeling so alone with my pain that I was crying, then came your bears. Thanks, again, Linda

lol.. glad you enjoyed them!

i seriously wonder why someone would say (or imply) that somebody was faking it. what goes on in their head when they see someone laying on the floor, crying, with a fever, and decide to simply walk away. it's like they want me to disappear sometimes..

Harley
It's a pleasure to meet you and am really glad that you found us. The bears are a treat and I like them too.
Hope to see you around more.

Linda dear heart; I've been worrying about you and wondering if you did not find your self in a deep state of pain for some days now. I hope you get feeling better and are able to come back to participate. take care of your self.

Gentle Hugs
Betty

it's definately good to meet people who can honestly say "i know how you feel".. i find it so condisending (sp?) when someone says that when you, for a fact, that they don't. they can't imagine what it's like to wake up crying every morning and the subsequent dash to get the painkiller down your hatch in hopes that you'll feel up to taking a shower..

~harley

Bob, Harley, Betty, et al,
I found out this morning my trial for the pump will be on Jan 28. I am really excited, but also sad I have to wait so long. Oh wll 20 days isn't so bad. Put it in perspective, Linda, 5 years is a long time, not 20 days. I so hope it works. Linda

Hi,all. Sorry it took me so long to get back with you all and thank-you for responding to my last post. The last few days I spent a lot of time with my daughter and when I come back home I am just so emotionally spent that I just want to forget it all for awhile-I feel guilty about that, because I know she can't.
But we have had some good talks recently and I think I can help by just being there-helpless but at least I am there.
To answer your questions, she has a compression of the T7 and T8 vertebrae onto the nerves it happened when she was assisting a resident at the nursing she worked at. When the pain is at it's worse it is not only in her back, but goes up and down her arms, into her ribs and chest. Taking a deep breathe is even excrutiating and it has caused her some sleep apnea problems along with the morphine and the methadone she is on. She has had 3 surgeries to implant or correct a neural stimulator which is implanted in her cervical spinal cord area-but because of the injury and/or surgeries has developed a spinal curvature there, the surgeon was not able to get the right lead in the correct position during the last surgery to help with the pain on that side but it still works on the left side. After 10 months of fighting the workman's comp insurance adjuster, she was able to get the pain pump approved and it was implanted in Oct 2006, but the incision never healed well, after going to a plastic surgeon who debreeded (sp) it in February 2007, it started to heal better, but it became infected with Staph Aureous in May. They tried everything to get rid of the infection to include intravaneous pik line injections twice daily. At the end of June she went septic and the infection went into her lungs and enlarged her heart, she also had a severe allergic reaction to the pencillin (sp)while she was in the hospital. In July right before she was to leave the hospital-they gave her intravenous rosephin (sp) and she had another allergic reaction and after 3 days was back in the hospital again. So they had to change the antibiotics to levaquin and bactrim. With going septic and all the allergic reactions-it affected her ability to keep her O2 levels up, so she needed oxygen at home, also her skin sluffed off all over her body and her hair fell out it globs. After having intraveneous antibiotics once daily after that the pain pump pocket still was infected, causing her lymph glands to swell, so they needed to remove it October 5 2007. I have been doing wet to dry treatments on the ever since started out 3xdaily now just 1xdaily. It is healing well but has taken a very long time and the doctor will not even attempt to replace the pump elsewhere until she is completely healed plus we don't know if he can get approval again to do it. The oral morphine, methadone, and MS Contin doesn't touch the nerve pain, just takes the edge off as she says. But the nausea is extreme so she takes Reglan and Zofran 4xdaily. For those that are out there wondering after all she has been through whether she wants the pump back-YES-it is the only thing that has ever helped her!!! This is too long so better quit now. Thanks again-and for your prayers too. Jan

Jan -

Please send her (and you) my best. I'm glad after all of that, she's still fighting for a normal life.

As for me, I've taken one too many "bad news". Today I went to my doctor's office - well, kind of. My regular doctor just left the practice last month. I'm basically back to square one, to which I don't have it in my fight anymore. Anyways, I went in after delaying my appointment for well over a week because of a bladder infection. When I got to the office, I was first informed that my copay went up to $25. I hadn't been notified of this, at all. But, whatever, it's only $5 more. That's not where it starts getting really bad.. So, I'm checking in and the office manager says that she needs to talk to me. I'm thinking, "ok, I probably have a balance of $100 or something." Well, nope! I'm standing there, with a fever, pain meds wearing off, and she tells me that I owe over $400!! My messed up insurance DENIED coverage on basically EVERYTHING from just office visits to basic testing - as in blood tests for ANA levels, anemia, stuff like that. So, I basically had to argue the fact that I'm sick, I'm in pain, and I NEED to see a doctor for the UTI. All the while, she doesn't believe me when I say I can't work. She says, "I understand that.. but..." DUH! She's doesn't know, she' doesn't care. I understand that they need to get paid, I completely get that, but what they don't understand is that my insurance is crappy, and until someone figures out what the heck is wrong with me, I can't work and/or pay bills. She even called my mom!! I'm 27yrs and I can't handle my own bills anymore?! I feel like a complete failure at life. I'm supposed to be at school, but I can't. I'm supposed to be at a job right now, but I can't. I'm stuck... not moving forward.. and I don't have it in me to fight anymore. People tell me to sue my insurance company, but how can I afford a lawyer when I can't even pay my medical bills?? I'm so lost and hopeless right now, I think I'm just going to go lay down and startover tomorrow..

Well guys

I'm really glad that you all have returned to share some more about your life with us, or me.

Linda; I'm so excited for you and your new pain pump trial. I hope your able to keep us updated on how your feeling & how the whole pump experience is working out for you. I've heard some really positive things and many of the people with the pump, are able to be more active and gain much more of their life back. I really hope & pray that it works this way for you.

Jan; Your such a dear woman and I am so happy that your daughter has you and your able to come take care of her. Please try and keep an eye on your own health too, sometimes being the sole caregiver for an ailing loved one can be really stressful and cause us to become ill by our commintment to care for them. I really hope & pray that your able to get your own time doing an activity that is healing for your own soul and take the time to recharge your own batteries.
I just cannot imagine the excess pain & struggle your poor daughter has had to endure. It just does not seem fare.Please know you both are in my prayers and I hope you both are making out with such an extreme stress in your lives. take Care of yourself Jan and remember we do care, come to visit when your able.

Harley; When it rains it certainly pours! I'm sorry for your dreadful news at the doctors office, you certainly did not need that stress to come on so unexpectedly. Have you thought about contacting your insurance company about it. Sometimes they are just missing some information in the paperwork the doctors sent to them and can be cleared up and get paid too. I know that the added stress is going to cause your pain to flare. Do You have any type of therapy for stress reduction/relief???? I've found that walking & meditating has really become helpful. I also take daily saltz baths using a 1/2 Baking soda, 1 cup epson saltz, 4 table spoons of village naturals bath saltz and then soaking in it http://www.thevillagecompany.com/therapybathsoak.html. I know your probably thinking, duh. I already do some home treatments and they don't help, and you'd be right about them not curing the stress, but they do sometimes help a person to deal with the stress in a more effective manner. It sounds like your stress levels are really way too high, it makes it even more impossible to function. I don't handle stress very well and the slightest bit will put me in bed for days, so I have to be very vigilent in keeping mine under control. I hope you can get some stress off of you soon. I'm really sorry for you and would like to help in any way I can.
I am really glad you've found us and I hope you can gain some help by discussing your issues.
Take Care of your self and please remember we all do understand & care about you.

Betty

Jan -

Thanks for the recipe! If I had a bathtub available, I'd try it out. Maybe when I go to Hawaii and have a condo...