Fibro Warrior of the Week (#23)
FWOTW: Tami Stacklehouse
Location: Portland, Oregon, USA
Mantra: This too shall pass. Remember the cherry blossoms. There’s a whole blog post on my website on the symbolism of cherry blossoms & Fibromyalgia, called Why Do Cherry Blossoms Speak of Fibromyalgia?
Tami Stacklehouse is our 23rd Fibro Warrior of the Week. She is a health coach as well as an advocate for Fibromyalgia; a strong supporter of Spoonies who also recognized a connection between cherries and Fibromyalgia. But don’t think she’s all sweet: one day, she might even pass your grandmother in a race…
FD: Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Tami: I live near Portland, Oregon, with my husband, Scott, and our three cats: SamSam, Jesse, and Sniglets.
I love to ride with my hubby on the back of his Harley during the summer. In the winter, I’m reading by the fire with my cats. SamSam has his own chair in my office and “helps” me do my coaching. I also collect wall crosses and have over 100 from all over the world.
FD: When did you first suspect that something wasn’t right? What happened?
I’ve never been super healthy. My parents always said that when we were kids they’d take my sister to the doctor for repair (she was the tomboy) and me to the doctor for maintenance (I was sick a lot).
Things *really* changed in 8th grade when I became sick with mono. I never really was the same after that. I was always more tired. Getting up for school seemed almost impossible, for example. Then, in my 20′s & 30′s I had a super stressful job and things got a lot worse physically. I kept feeling like I could fall asleep in an instant – any time of the day – if I could just turn off the lights and lay down. I started hurting all the time. I asked my doctor if it could be Fibromyalgia or Chronic Fatigue, but she said no, of course not. The company I worked for had us locked into an HMO, so I couldn’t change doctors. Also, I was single and had just bought my first house… I couldn’t fall apart! So I kept working & pretending like everything was normal…
FD: When were you diagnosed with Fibromyalgia?
Tami: In 2005 I met Scott. We were married a year to the day from when we met. He totally saved me. Not only was I able to get new insurance, but I also got a new doctor and finally got my diagnosis in 2007. Scott was also the one who decided that my stressful job should end. On one particularly stressful day, he rode his motorcycle down to my office and told me, “You’re quitting. No discussion.” It was every girl’s dream! My knight in black leather. =)
FD: When you received your diagnosis, how did it affect you?
Tami: I remember the day I was diagnosed. I had to pick out a new doctor for my new insurance. I looked doctors up online and randomly picked one that looked nice; I really didn’t know anything about her.
Turns out that even though she was a general practitioner, she had specifically studied fibromyalgia in school! Finally! Someone who understood and could actually help me! I literally cried as I drove home from that appointment. I felt like there was an answer and hope for the first time.
FD: Since then, how has your outlook on life changed?
Tami: I’ve become a health coach and specialize in working with women with fibromyalgia because it’s my way of making something good out of my illness. I remember how hopeless I felt, how lost, how completely not understood. I don’t want anyone else to feel like that. I want them to have hope. It’s my way of “making lemonade out of lemons.”
In my own life, I’ve realized how important self care is. I have to keep doing the things that made me well if I want to stay well. Coaching others keeps me accountable and from slacking too much. =)
FD: How does Fibro affect your day-to-day life?
Tami:After I was diagnosed, my Fibromyalgia got bad enough that I had to file for Social Security Disability in 2008. It was a hard decision to make. I didn’t think of myself as “disabled” but the truth was – I was having trouble taking care of myself on a physical level. I was often in the same clothes (my pajamas) for a week straight. It was too exhausting to take a shower. I slept for most of the day.
Since then, however, I’ve been able to find things to help me get better. In fact, by the time I finally got my date with a judge in 2010, I was so much better I no longer qualified for SSDI.
Now, I can *mostly* live like I don’t have Fibro. As I said earlier, I have to keep doing the things that make me feel better if I want to stay feeling better: getting enough sleep, taking my supplements, practicing good self-care, etc. I also have to stop doing the things that made me sick: eating junk, pushing myself too hard, treating my body like the enemy, etc. If I go back to my old bad habits, I’ll go back to how I used to feel: old & bad. LOL!
FD: What can’t you do anymore because of Fibro?
Tami: I always have to remember the consequences of my actions. I can no longer afford to do whatever I want, whenever I want, and expect to feel good. I have to take care of myself, plan ahead, rest up afterwards, etc. I no longer have the luxury of living without thinking about the choices I make.
FD: Name something you do now that you never would have imagined happening before your diagnosis.
Tami: I never imagined I’d be a Fibromyalgia Coach. I also never suspected that I would end up leading a support community or helping to start a non-profit (www.FibroCFSSupportCenter.org). This illness has given me a whole new life. I used to be in the tech industry, where it was all about production and numbers. Now I’m all about the people. My new life has a much different pace and a much different focus. I love it!
FD: What has been your experience with seeking medical treatment for Fibro?
Tami: My *personal* experience has been amazing. I was blessed to find just the right doctors at the right time. (Not counting the years prior to switching insurance.)
However, the experience I have through my clients is that there are dreadfully few doctors who actually know what Fibromyalgia is, can diagnose it correctly, and treat it effectively. I still get clients who tell me their doctors say Fibromyalgia isn’t real or that it’s all in their heads. Then there’s the other doctors who attribute everything to Fibromyalgia, as if it’s a catchall. Neither is correct; neither helps those who are suffering. One of the key things I do for my clients is to help them get good, effective medical care.
FD: How has Fibro affected your relationships, friends, family, partners?
Tami: It was really hard at first for my family to understand what I was going through — especially when I filed for disability. They didn’t see me on a daily basis, so they didn’t get it. Even my husband didn’t understand, because he wasn’t really watching me — and I would put on a “brave face” when anyone was around. It was really difficult for them to understand why I could do something one day — and the next day I couldn’t.
Then, I found The Spoon Theory, and shared it. Things got a lot better after that. My family now understands better about my “spoons” getting low. I recommend that story to anyone who has family that is having trouble understanding.
A few cool things happened in the midst of this: I had friends volunteer to help me in ways I never would have expected. One volunteered to come over and deal with some boxes in my office I just didn’t have the energy to handle. Another wanted to help me finish a painting job that I’d flared up in the middle of.
Thanks to Fibro, I’ve learned how to ask for help, and graciously receive it.
FD: What is the biggest challenge you face living with Fibro?
Tami: Even though I’m a health coach, I still struggle to do all the things that I know help me stay well. It can be incredibly hard to eat the right things, go to bed on time every night, take all those handfuls of supplements.
Okay, it’s not just hard, it’s *impossible* to be perfect at it. I mess up. I eat things I shouldn’t. I stay up too late. You name it, I’ve done it. But I keep getting back on my program because I never want to feel that helpless again.
FD: What inspires you to keep on fighting?
Tami: Two things:
1) I never want to be that sick again. I like my life too much!
2) My clients. If I didn’t have to help someone else every day, and listen to myself say the things *I* need to hear, I don’t know if I could do it. It would be easier to quit. I can’t expect my clients to do something I won’t do, so I keep going.
FD: What advice do you have for other people who are living with Fibro?
Tami: our body is not your enemy. Fibromyalgia is. Fatigue is. Pain is. You will never get better until you learn to take care of yourself like you’d take care of someone else. Self-care is absolutely KEY.
I’d also like to say that you absolutely do not have to go through this alone. There are people out there, like me, who are available to help and to listen. There are also communities of people that support each other, whether it’s online, in person, over the phone, etc. The support community I lead has lots of options for people no matter where you live. We’d love to have you join us!
FD: Do you have a funny Fibro story you can share?
Tami: I’ve had my Fibro Fog moments, like everyone else, but here’s the story that first comes to mind:
It was in 2010. I decided that I would walk a 5k, even though I had Fibromyalgia. My hubby, Scott, walked with me. We had barely gotten off the start line when everyone started passing me.
“That’s okay,” I thought. “I’m not here to go fast, I just want to finish. I don’t care if I’m dead last.”
Not too long after that a “grandma” jogged past us. She looked like she was in her 70s or 80s. “Good morning!” she waved, as she jogged by.
Scott and I started giggling. I looked at him and said, “On one hand, I’m completely embarrassed that I’m being passed by a grandmother who is running while I’m walking. On the other hand, I want to be just like her when I grow up!”
Yes, I finished, and yes, we were dead last. But I did it. =)
Follow Tami on Twitter: Twitter @tamicat
Like Tami on Facebook: Facebook: FibroCoach
Follow Tami on Pinterest: My Restored Health
Check out Tami’s website/blog: My Restored health
Powered by Facebook Comments