The tapering off did not work well at all - this is well established.
My med level (the way it is) leaves me in severe pain every day and without the ability to put a basic thought together for 3/4s of the day. This obviously isn't okay.
Whether it is a stimulant for day, or a better sleep med at night - I need something.
The Gabapentin needs to be upped again, or I need to switch back to Lyrica.
I may need opiates.
I have two important doctors appointments coming up within this month. Not that I want to put too much enthusiasm into them, as I'm sure I will end up being disappointed with the way they handle the situation of my illnesses.
I have to have hope though. Hope is what keeps me going.
- I have hope for Jonathan and I, as a team.
- I have hope for making friends that I could potentially keep and have as part of my life.
- I have hope that I may perhaps get freelance work at some point where I could make some of my own money!
- I have hope of eventually adding to my already wonderful family :).
- I have hope that someday my pain could be lessened, or even further understood.
- I have hope that I may be able to change my thought patterns to more body-friendly ones!
- I have hope that someday the social assistance program for sick individuals will be of more help!
- I have hope that I will be able to help some people and touch their hearts the way some have touched mine :).
- I have hope to be able to write and paint and try to keep my stress levels as low as possible!
So many reasons to keep fighting!!!
What are yours??
xoxo,
Annie
P.S. Psyched about Proposition 8 being overturned!!
(Image from WeHeartIt)
6 comments:
I LOVE that image! I'm so excited about today's ruling and ready to keep fighting.
The things that give me hope are my husband, my pets, my best friends and all my Facebook, Twitter and other online friends in the same situation. You guys are the best!
sending hugs... i know what u mean about med adjustment. going to gp next week to sort it out too as my pain levels aren't getting any better. i am on lyrica and it's the only thing that helps remotely but dopes me up so i dont want it increased... they stuck me on regular diclofenac but it didnt help at all... neither did co-dydramol...
i cant bare the pain anymore! let us know how you get on hun x x x x
I'm so glad you found so many things to hope for, Annie. Keep hope alive!
A wonderful list of hope, Annie! I don't remember whether I've told you this before or not (so please excuse me if I repeat!), but I wrote a blog post a while back about treating sleep dysfunction that included links to two excellent articles. I shared these articles with my doctor, and they really helped us to find the right meds in the right doses. It can take a lot of trial and error, so don't feel too frustrated that your current regime might not be working well enough. My son and I both ended up with a combination that works well for us - we now sleep "normally" most nights and wake up feeling refreshed. Anyway, here's the post, in case you haven't seen it before:
http://livewithcfs.blogspot.com/2009/09/treating-cfs-sleep-dysfunction.html
And if you want to change your destructive thoughts, as you mentioned, I highly recommend Toni Bernhard's new book, "How to Be Sick." It's filled with excellent advice for improving quality of life while living with illness - I posted a review of it on my blog this week.
Thanks for sharing all your hopes!! You're inspiring!
Sue
It's taken years of adjustment in terms of how much and when to take with my lyrica dose. I still use opiates for breakthrough (and other chronic pain issues) but my reliance on those is down a whole lot.
I think of myself as a chronic pain survivor; fighting to survive the pain. What keeps me going? A stubborn streak; my hubby; my friends in the real world and in the cyberverse. Inspirational posts from folks like you. Thanx!
I Love your blog.
Hope: My leaky valve will be healed.
My RA will abate with this 4 month flare
Lupus will have better treatments
My son will find love
My husband will worry less and live more
I will find happiness, true joy, even if only for a moment each day
The music will never end.
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