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Welcome

I've been looking for some other CP/IP (Chronic/Intractable Pain) patients who would like to contribute to this site, whether one time, sporadic, or regularly. If anyone is interested, please email me at IntractablePainKills@gmail.com

I'm also open to any suggestions about improving the blog.

IF YOU WOULD LIKE TO COMMENT ON ANY POST, PLEASE CLICK ON THE TITLE TO LOAD THE INDIVIDUAL POST.


DUE TO A GLITCH IN BLOGGER, MY POSTS DO NOT ALWAYS POST IN ORDER BECAUSE THEY POST USING THE TIME THAT I STARTED THE INITIAL DRAFT. I DO MY BEST TO CORRECT THIS WHENEVER POSSIBLE, HOWEVER SOME SLIP BY, SO PLEASE REMEMBER TO READ THE TITLES OF MORE THAN JUST THE MOST RECENT POST IF YOU DON'T WANT TO MISS ANYTHING.
Showing posts with label Distraction Techniques. Show all posts
Showing posts with label Distraction Techniques. Show all posts

Saturday, December 28, 2013

Mini-update

I felt bad for not updating much lately, so here we go. My doctor increased my clonidine patch to two clonidine 0.3mg/day patches (0.6mg/day). In short, it made me sleepy for two days, and extremely weak for a week. I'm recovering now, but I'm worried because my legs still hurt. On a positive note, it is helping with other symptoms, like my headaches.

Christmas was hard, but I'm surviving. I'm praying that Santa was a little late with my Christmas wish,  a pain doctor willing to manage my pain. Maybe, my future PM doctor is waiting for New Years and their New Years revolution to help more Medicare & Medicaid pain patients.

I wish everyone a happy, pain-free New Year

-Steve

P.S. Got a Canon EOS Rebel T3 digital SLR for Christmas. I haven't had a chance to play with it because it was just delivered yesterday thanks to FedEx taking THREE WEEKS to deliver it. I'm so excited! Remember, hobbies are great distraction techniques.

Wednesday, November 20, 2013

Update + Sex & CP/IP

I once again feel the need to apologize. My posting has been limited lately.

As winter draws nearer, the child weather worsens, and so does my pain. The opioids only do so much and distraction techniques must pick up the slack. Unfortunately, some of the most effective distraction techniques will exasperate my pain. My wife and I have been volunteering at the local no-kill dog shelter. This is both a great distraction and a great way to add meaning to a life of unemployment. The unfortunate part is the side effect, the SIGNIFICANT increase in SEVERE pain.

My wife wants to volunteer much more often than I am physically able, so this thing that should have brought us together has been corrupted by intractable pain into another topic of animosity.

Pain corrupts most things that make like worth living, from work and volunteer work to dating, marriage, and sex. There's nothing that we can do to stop it, but that doesn't mean that we shouldn't try to fight it.

I never would have believe that at age 24 I would need to take multiple pills (breakthrough opioids and sometimes a muscle relaxer) in order to have sex. I used to save my Actiq for the end of the day because they allowed me to perform closer to the way my wife remembered before IP took over my life. Was I still able to go for six to ten hours, hell no, but two hours was no longer out of the question. Having sex half of a dozen (occasionally up to a dozen) times a day is also a pre-CP/IP pursuit, but twice in one day and three or four days a week is possible with carefully timed opioids. *quick note: Sex is a great distraction technique when the pain gets really bad, although it can also exasperate pain flares*

I believe that the biggest reason that untreated CP/IP destroyed marriages is that it destroys the closeness that comes from sex. I'm not saying that cuddling up and watching a movie doesn't have a similar effect, but everyone needs their own ratios of each. It's a lot easier to deal with a spouse (or significant other) who is grouchy from unrelenting pain if they make you feel special.

When my doctors first cut my fentanyl patches in half and eliminated my Actiq and methadone, I gave up on life. Everything suffered, especially my wife's and my sex life. We both felt like I wasn't contributing and my wife grew to resent all of the little things that she does to make my life livable. As time went on, either of us felt very sexy or sexual and several times per day quickly dropped to 2-3 times in the first month and 4-6 times the next month. Thankfully, my doctor started to realize that he was killing me and increased my pain medication. It was at that same time that I realized that it wasn't just our sex life that we had abandoned, it was most of our relationship. When you're bedbound from pain and there are multiple known cures (to being bedbound from pain, they're only treatments to the pain itself), you get depressed and lose the will to live- not sexy.

I originally had a point beyond describing the hell that is CP/IP, but I've forgotten what that is. So, I'll end with these thoughts
1) CP/IP will corrupt everything good in your life, you can't stop it, but you can minimize it's effect
2) sex is an important part of relationships, try not to let pain eliminate it from your life
3) when sex isn't an option, there are other ways to maintain closeness- USE THEM
4) without intimacy (sex, cuddling, etcetera), relationships are doomed to fail
5) tell your doctor what CP/IP is taking away from you (even if it is as embarrassing as sex), it makes it real for them
6) All men AND WOMEN with CP/IP should have testosterone levels checked, especially if you're experiencing a loss of interest in sex

Steve

P.S. I hope that everyone is in minimal pain and handling the changes in weather and the holidays without too much excessive stress.

Saturday, November 9, 2013

Paying for it

I spent a few hours volunteering at the local animal shelter yesterday. I WAY over did it yesterday, and now the nerves in my legs are on fire. I can practically trace the nerves because they're so inflamed. I missed our weekly outing with our daughter (museums, historical society, hikes, parks, carnival, Army war college, etcetera) this morning. This afternoon, I didn't get to go to the animal shelter (my wife still went and helped for two hours). And now, I'm missing out on going out with some of the people at the shelter (my wife got both of us invited while  I slept and she volunteered).

I'm not sure which is more frustrating
1) constant, unrelenting pain
2) inconceivable BTP (breakthrough pain) flares
3) missing out on everything (family stuff, social stuff)
4) NO ONE gets it

I think the worst part of this is that none of this is necessary! I'm in pain for no legitimate reason. My pain was under control (bad, but under control) with low dose methadone, Actiq, Duragesic, and oxymorphone. My pain was virtually eliminated with 3mg/day intrathecal morphine. I feel like the one sane person in a world of crazy. I feel like I'm screaming and no one is listening. I'm in excruciating pain, there's medication that can fix it, I'm insured, my insurance will cover Duragesic, Actiq, methadone, oxymorphone, AND an intrathecal pump, I have NO risk factors (including NO family history) for abuse, I don't smoke, I don't drink, I've never abused my medication, I've never been high, I have cancer, I'm dying, I've never run out of meds or needed an early refill, I've tried EVERY non-drug treatment recommended, I've tried every non-opioid, I've tried every single weaker opioid, I'm beyond compliant, I keep myself informed (as instructed, although it's being used against me now)... and, STILL, I'm treated like shit and get inadequate treatment.

How does this make any sense to anyone?

Steve

Sunday, September 22, 2013

Update

I spent several hours at the park with my daughter yesterday, I risky over did it. I'm in excruciating pain and I can't sleep even with my nausea medications. I used another of my severely limited supply of Lidoderm (my insurance gives me crap about opioids, but doesn't covert Lidoderm without a shingles diagnosis, what a racket).

On the plus side, re-watching Mythbusters and remembering some neat facts. Mythbusters is a really good distraction.

Mini rant: pharmacy can't get fentanyl patches in stock and we're eventually going to be stuck with a new brand that may or may not be useable. I'm so sick of artificial stuff shortages thanks to the War on Drugs!

Steve
IntractablePainKills@gmail.com