Thursday, May 7, 2009

Pain Pain Pain Pain Pain Pain Baked Beans Pain Pain Pain and Pain



BR's pain levels were off the chart today. He says he feels like his muscles are trying to pull away from the bone. It's been a day full of tears for him. Hugs provide emotional support, but make the pain worse.


I've been reading the Musings of a Cranky Caregiver blog for a while now, and I think Cranky and I were separated at birth. Come to think of it, I've never seen us in the same place at the same time before. Hmmm...

Anyway, she discusses the things about caregiving that make her cranky, and how she tries to de-crank those situations. Exhaustion is a big one for me. BR and I have always been night owls. In a way, the MS encourages this, as he will sleep until 11am no matter when he goes to bed. The hard part comes in deciding when to call it quits for the evening. If we're still up when I hit the wall, I can't just crawl into to bed -- I have about an hour's worth of work still ahead of me.

The first step in the night routine is getting him into bed. Then the jealousy sets in -- he's done, and I still have to work. So it's time to go back to a set bedtime: 10pm. We can still stay up and watch TV together in the bedroom.

But that wasn't an issue today. I got him into bed at 6:30pm, and with his permission, medicated him until he was able to sleep. Still, he was moaning and twitching with pain.


I was reading in the local paper that our state Senator Watson had authored and pushed through a bill to ban additional billboards along a stretch of scenic Texas highway. This is the same senator who told me he would keep BR's situation in mind if any legislation was brought to the senate floor to legalize medicinal marijuana. So his pen moves to keep his drive pretty, but not to relieve the pain of his constituents. It makes me sick to my stomach just thinking about his bass-ackward priorities.


We've started discussing end of life options. BR doesn't want to live with this much pain. Prayer. Lots of quiet prayer and looking for signs.

7 comments:

Cranky said...

Steve - I rode a rollercoaster of emotions reading this post. I'm old enough to remember and love Monty Python and always thought the Spam bit was great. Laughed. Then, happily saw the reference to my blog and how it strikes a chord with you.

At the end, though, I was shocked and sad. I was going to ask questions like ... has BR tried getting high in TX despite its illegality to see if knocked out his pain ... could you move to somewhere where medical marijuana is legal ... and the like, but I figure you've already asked and answered those questions together.

I will think of you both often.

steve said...

Hi Cranky -

From the Texas Informed Consent and Pain Management Agreement:

[...]
* I agree to submit to urine and/or blood screens to detect the use of non-prescribed and prescribed medication(s) at any time and without prior warning. If I test positive for illegal substance(s), treatment for chronic pain may be terminated. Also, a consult with, or referral to, an expert may be necessary: such as submitting to a psychiatric or psychological evaluation by a qualified physician such as an addictionologist or a physician who specializes in detoxification and rehabilitation and/or cognitive behavioral therapy/psychotherapy.

[...]

I certify and agree to the following:

1. I am not currently using illegal drugs or abusing prescription medication(s) and I am not undergoing treatment for substance dependence (addiction) or abuse. I am reading and making this agreement while in full possession of my faculties and not under the influence of any substance that might impair my judgment.
2. I have never been involved in the sale, illegal possession, misuse/diversion or transport of controlled substance(s) (narcotics, sleeping pills, nerve pills, or painkillers) or illegal substances (marijuana, cocaine, heroin, etc.)
[...]
All pain management doctors in Texas require their patients to sign this contract. Marijuana users are lumped in with junkies.

We had access to medicinal marijuana in California, and it worked wonders. Street marijuana doesn't even compare.

Sticking close to family dictates where we hang our hats in this phase of the disease.

Thanks for your support, and the great advice on your blog.

Herrad said...

Hello Steve,

Really upset reading about BR and the pain he is in.

It is ludicrous that there is so much fuss about a plant that can give BR a better life and the prejudice of a few make it impossible.

Very upset really and raging at this bullshit.

Love to you both.

Big hugs,
Herrad

Rain said...

I don't have any advice, but I'm so sorry you have to go through that pain. I thought about end of life options for many years when the mental health issues were at their worst, I know how it is to want to end the pain. You have my hugs and my support. Take care.
Rain

steve said...

Hi Herrad -

We know that pot isn't a cure-all, but the medicinal kind sure would make what's left of BR's life a hell of a lot better.

Hi Rain -

You probably know better what BR is going through than I do. I've been in pain, but it has always had a happy ending in a short period of time.

Thank you both for your kind comments.

sbutterfly321 said...

Hi, I am new to this blog. I have had MS for 13 years and a friend told me about this blog because I too am on the Fentanyl patch and 750 mg vikodin. I am in so much pain and I feel like no one understands me. I also have Fibromialgia. I am in pain and so darn tired
I am in bed all the time. I have always been positive and happy, but now I am feeling really crappy and my friend said I need to reach out to find support. I am 40
and the only thing that keeps me hanging on is my two daughters. One is on her own but the other is 12 and lives with me, I feel bad can't do much with her I always have pain. Nice to be here I hpoe you are all doing better than I am.

steve said...

sbutterfly321 -

Thanks for stopping by. I hope you enjoyed your visit. Vicodin 7.5/750mg is pretty heavy on the acetaminophen. You can't take more than 5 per day without putting your liver at serious risk. If you are getting close that limit, you might want to check into Norco. BR has Norco 10/325 for breakthru pain -- more hydrocodone and less acetaminophen.

With Fibromyalgia, you are probably on a couple meds for neuropathy. BR is having pretty good success with Lyrica and Topamax.

I know it's not much comfort, but you are not alone in dealing with severe pain on a daily basis. We'll keep you posted as we work through the remaining options available to us.