why do i have chronic pain?

18 02 2008

Essentially, I’m a workaholic with Rheumatoid Arthritis and also Pancreatitis. Both are auto-immune diseases which means that my body is attacking itself. I’m on a quest to find out why or rather how to turn this around to create more positive energy in my life. But maybe that’s not what it’s about at all. Maybe it’s just 2 diseases that came at me for no real reason. I’m certain it’s changed my relationship to Jax. Some of my guy friends have confessed they never could have stuck around. But it’s still hard to not be cheery and happy and know you’re so down that day or week or month. I don’t know how Jax does it but one thing is I refuse to see myself as a sick person. That helps a bit except when I have to crash or he wraps up my legs and puts cream on them to soothe the pain.

This whole site is devoted to my battle with these issues. And I love sharing my information about what these diseases and medications do to me personally since I know a lot of doctors don’t seem to get the big picture about our whole bodies. I feel like we’re still living in the dark ages of medicine.

I love my work and only wish I didn’t have to do as much for my clients so that I had more time for my own company’s projects. I speak publicly to teach my trade but lately i’ve been asked to come and tell my story. The thing is this: I’ve never truly let this illness/disease get me down. I keep on going despite the sometimes life-threatening odds. I’m on a diet after the steroids (Prednisone) and not sure if I’ve lost more than 2 pounds in two weeks. I weigh in tomorrow and I’ll find out. The only place I really allow myself to express the hardships is here on this site.

The rest of the time I battle to not let it interfere. That goes under the header I wrote before called “Hiding the Pain“.

I got my pancreatitis intrathecal pump refilled last week and now inject myself twice a week with the Enbrel. I can tell that it’s working. I get my pump filled every two months. There’s so much maintenance between the pharmacy, doc appts and offices, and charging back to work through the traffic.

I’m 2weeks on Enbrel and it’s really helping, but I have temporarily lost my Sundays to recovery and sleep. I have no energy right now and I feel like i’m barely squeaking by. I’ve recently hired 2 new teammates to help me get through this stack of overdue work. I’m just going through a new medicine and it’s always been hard on me. I haven’t felt like writing since I truly have no energy. For now, just being is enough.

-Sasha

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8 responses

30 04 2009
Magdalla

I have Chronic pain from many sources, I have had CLL, Chronic Lymphisitic Leukemia and other diseases that just waste me of energy, but then the biggy, Addison’s Disease, a rare a and severe form that has required Prednisone for life, I have put on 35 pounds and just hate it, it is harder to be heavier because everything hurts worse including your heart. I would love any suggestions on how others have been able to escape the weight gain grip of steroid use especially long term use, I really need some advice on the subject. Love Magdalla, PS you can write to me at MyGodofLove@aol.com if you want too.

12 03 2008
typeawithra

Jen, The biggest piece of advice i can give you is get on a weight program right away. It’s the one major thing I regret that my doctor didn’t tell me to do something like that. It’s going to take me ages to lose the weight I gained in the 1st 2 months of being on prednisone. + if you are on it for 8 weeks there’s also the month of taking you off of it. Hope that helps. -Sasha

9 03 2008
Jen

Hi Sasha –

Just found your blog this morning. I was diagnosed with RA last week and put on prednisone. I, too, am in my 30’s and somewhat in denial and disbelief. I am worried about what this is going to do to me … actually, I am more worried about the prednisone side effects than anything else. I don’t want to be on this drug since I have heard just terrible things about it, but this is what the doctor recommends, so I am going to try it. I am only supposed to be on it for 8 weeks (it’s relatively a small dose), but I am still concerned. Good luck to you and keep blogging!

Jen

25 02 2008
Laura

Hi Sasha,
I too have both RA and chronic pancreatitis. Just dx’d the pancreatitis about 6 months ago after several years of that pain. So glad/ sad to find another on this road. I too am so very grateful that my husband is still with me and embraces the caretaker role, though I worry about the effects on him and on our relationship. Share your frustration and deep loneliness with the hiatus of affection and intimacy. Pray it’s a hiatus, not permanently gone.
Anyway, please know that someone else gets it, you’re not alone in this weird life. Timing is funny. I had just a couple of days ago described myself as a type A stuck in a type B life. So it was time to e-meet you. Best wishes, and a long, big hug to you.
Laura

23 02 2008
typeawithra

Thanks Jay and Nicole. I was grateful that people are reading the blog and most importantly giving me feedback. It’s much more powerful than reading a book about healing. I’ll fill out the survey this weekend. How interesting. -sasha

22 02 2008
Nicole Taylor

Hi Sasha,
I really like your blog. I am doing research on the psychological and emotional effects of RA and other autoimmune diseases. I would really appreciate you filling out my brief online survey or telling others about it. I have found that people with RA do a great job of hiding their pain (like you talked about) so it is my hope that this survey will allow people to tell me more about their experiences.
Thanks for considering it,
Nicole Taylor
Doctoral Candidate in Counseling Psychology
University of Maryland
http://www.surveymonkey.com/s.aspx?sm=Sig0nnnADT_2ffq2hib0mrOQ_3d_3d

20 02 2008
Chronic Pain » Blog Archive » Chronic Pain-Topic Overview

[…] why do i have chronic pain?Essentially, I’ma workaholic with Rheumatoid Arthritis and also Pancreatitis. Both are auto-immune diseases which means that my body is attacking itself. I’m on a quest to find out why or rather how to turn this around to create more … […]

18 02 2008
Jay

Hang in there with the enbrel. I’ve been
on it for a couple of years (I have ankylosing
spondilitis) and it just keeps working better
and better.

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