Balance: Disease vs. Real-Life

8 06 2008

For my RA things are looking up: The Enbrel is working great again. I ran down the stairs just now and was so gosh darn excited! I haven’t been able to go down the stairs like that in ages! I’ve also dropped my cane near the front door and haven’t had to use it for a few days either. I’m hoping that is a long-standing tradition.

I’m now preparing for a huge project in mid-July and hoping to bring all of my resources together to make it a success. I’m going to be working with tons of teenage girls. I’m excited about it, but this is the issue: My work is very behind because of my crappy health. There are lots of things I needed to have done already but could not. I never want to make excuses for it – but my health being so bad still has stolen many hours of my time. Now, in order to stay on track and to help the girls I am going to need to hire 2 assistants to help me with the workload. I CAN’T LET MY DISEASE WIN AND TAKE OVER MY LIFE!!! The irony of course is that my medical bills are so high (even with insurance) that I can’t afford the teammates that i need to hire in order to help the girls. I’d rather search around for the money than have the project fail. [ Please consider donating to help over 40 at-risk teenage girls through a project I am helping with]. Jax has offered to take off one week of work to help out in July. This will be a huge savings for me, but still not nearly enough to make the project go decently.  I’ll have to continue thinking of ways to raise the funds.

Here’s some notes from my internal dialog: I refuse to be lazy. I refuse to let pain get in my way. I refuse to complain about it any other place than right here on this page. Naturally, this gets me into a viscous cycle of beating myself up and then that spirals into depression. Many studies have been done that show that depression makes the pain worse. You can not let yourself stay depressed!!! It is of great urgency that I keep myself out of it. This is my constant mantra to keep myself on track: I am not my diseases. They try to win my time but I refuse to let them succeed. I need to think like an Olympian in order for my project to turn out well… I need to stay focused and not let anything distract me…But unlike a sprained ankle or jock itch, my pain can literally shut my body down so I truly can’t push it too hard. I have pushed too hard many times, but only ended up 18 feet back.

So the next part is about balance: “I will push myself hard but I promise to listen for the signal to stop. I promise not to ignore it, since I know this will only make it worse. I promise to try 1 new thing this week to lessen the effects of my disease. I will not stay stagnant in the depression of it..and i promise to do activities to get out of the depression as quickly as possible. In AA (alcoholics anonymous) they have the concept, “help another person to help your own disease...the reason is because it helps take you out of your own depression/or keeps depression away if you’re not currently depressed.” This has been true for me and I highly recommend it EVEN when I feel too crap to help anyone. That’s when I focus on getting the house cleared out of stuff to give-away or small things like that. It just lifts me a bit out of my depression and usually keeps it away for awhile. I can’t allow my diseases to become the center of my universe. But then I realize that the time I used to distract myself from the pain has actually taken away the time I needed to get something accomplished. it is a conundrum! What do other people do? –Sasha xoxox

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4 responses

22 08 2008
Karin

Hi Sasha,

Just came across your site. I have RA and Fibro. I’m on Enbrel, Methotrexate and Sulfasalazine. Tramadol for breakthrough pain. Anyway, as far as the depression and self talk goes (dealing with chronic pain and limitations) I’ve gotten great benefit from Acceptance and Commitment Therapy. There’s a great workbook by Joanne Dahl on ACT and chronic pain, and another one on ACT in general by Steven Hays. I highly recommend them both.

7 08 2008
linda

hi Sasha,
I stumbled across your blog as I was researching Enbrel. I’m so glad it’s working for you! I have gone through a lot of the ups and downs you describe, especially the complete joy/devastation of finding out you have RA. Figuring out why it took me 30 minutes to walk across a tiny parking lot made me want to jump for joy! On one hand it’s like “Oh, THAT’S what was hurting,” but on the other hand, it’s pretty much a life sentence.

I’ve been on methotrexate for about 2 years now, but they found some erosions and are urging me to go on Enbrel. How have you felt since going on Enbrel?

I hope to hear from you soon. Take care!
-Linda

9 06 2008
BarkingDogShoes

Great blog. So glad to hear the Enbrel is working for you. I’m 39 and was dx with RA 11 years ago. I was one of the first to try Enbrel in the late 90’s. It worked wonders for me as my RA was pretty aggressive, but alas, I had to go off of it due to potential MS complications (another one of my diagnoses). Now I’m on Orencia and am experiencing the same kind of relief I had with Enbrel and am so thankful…but it’s so darn expensive.

About your post on balance: I struggle daily with trying to manage my cluttered home while being mommy to two active boys (age 6 and 1) and run my own business from home (shoe blog about comfy, stylish shoes). No advice since it’s a circus around here, but would love to read how others cope 🙂
Kirsten

7 06 2008
toobendy

So glad the enbrels working for you. Good luck on the project, wish I could help you out with a donation but I’m skint with paying for meds

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