Step 8: Choosing the Lens to Look Through

In all my reading, research and experiences, I have learned that one of the most important things is how you both look at and deal with things. My attitude towards my situation is more important than my actual situation as I have come to find out. This particular lesson is important to me now because it really is JUST starting to make sense to me in terms of what that really means.

I have been working on ways to incorporate health as an overall concept into my life ever since I was 20 years old. Whether that meant changing my environment or to stop putting chemicals in my hair. Every step has been a direct choice. When I was about 24 or so, I got a hold of Louise Hay's book, "You Can Heal Your Life". In the book, it stated that the psycho-emotional cause of Lupus was basically the inability to stand up for one's self; and it even provided an affirmation to counterbalance the body's message of dis-ease, of which I incorporated as much as I possibly could (even though communication definitely was not my strong suit).

I think what I have been grieving the last few years is all the work to "heal my life" feeling futile because I still had flares. Especially after having a long period of remission, it was quite frustrating to have any symptoms return. This caused me to do extreme diets, cleanses and fasts to "heal" myself, and quickly. And somehow, if I didn't get "better", something was REALLY wrong with me, because I have the power to heal myself.

At this point, it's not that I think that's not true. I do have the power to heal myself. I just think that having to be TOTALLY symptom-free for the rest of my life or I'm a failure is very stressful; and stress triggers Lupus flares. Also that kind of thinking and pressure over the last six years has not allowed me to have any wiggle room--it's either I'm well or not. The degrees of wellness get missed, as well as any progress. Here's my recent lens shift: I have the power to contribute to my well-being at all times. This means whether or not I'm having a full on flare or even mild symptoms. This means my goal is to ensure a healthful environment, conversations, company, etc. This means I will give myself a break sometimes. This means I understand every day is not easy - regardless of health issues or not. BUT, at the end of the day I am grateful. Grateful for noticing that I needed support in achieving a better state of wellness; grateful for reaching out despite discomfort, and having the sense to accept what I need that's outside of myself.

It's not just about knowing what to do from years of research, reading and experimenting; it's about having the wisdom to discern how to apply the knowledge I've accumulated over the years. In the words of Kenny Rogers, "You got to know when to hold 'em, know when to fold 'em, know when to walk away, know when to run". My goal is specifically this: to look for the best way to take care of myself in any particular situation. That I can do.

Step 7: Know What You Need So You Get What You Want

Now, this lesson was/is hard to learn, but well worth its weight in gold. Having a long-term health situation has posed different challenges over the years; whether in my work life, home life, love life, friendships or in my family.

One of my hugest hurdles has been denial. My own denial of having health issues has kept me from mending properly on many occasions; kept me from acknowledging something was actually happening with my body and ultimately kept me from taking care of myself at critical times. The denial wasn't just about not accepting my own limitations; it was also about having to mask for other people to convince them I'm "normal" (whatever that means). And in my recent quest of best practices for loving and caring for myself, this has definitely come up requiring a real review.

Yesterday was the first time I was out in public on a cane. At least willingly. What did this mean? It meant that 1) I understood that I was having a long day, was in a mid-grade level of pain; and 2) was willing to give myself the support I needed to last the whole day. This my friend, is progress. Being real about where I am and what I need will help me take better care of myself, and have more realistic expectations for myself. I was able to laugh and smile throughout the day because of that one little step that I've resisted for YEARS prior. Yes, I will admit part of it is vanity; I am a single woman for crying out loud...lol. But the bigger lesson here is the more I practice self-care, the easier it becomes. The easier it becomes, the more likely I will be able to do it automatically. This matters because there have been significant times when I've been willing to forsake my own self-care for someone or something else; and that hasn't worked out to my advantage as many times as I thought it would. (um, none.) So now, I carry my booster pillows when I go out, take my time walking, take deep breaths and do my best to check in with myself about how I'm feeling. We're getting there :)

I will admit, I still heard my ex's voice yesterday when I first got out there on the cane; for a moment I questioned if I could be "tougher" like he wanted me to, but his voice is not the only voice that's inside me. Thankfully, a voice of self-love and compassion is growing stronger and louder everyday...and for that, I am truly grateful.

Step 6: Getting Through the Thick of Things

The last few days have been very interesting. Something happens when you're in pain for a long period of time. For me, there's a place where things get to be too much physically. Swollen, tender joints, lack of sleep, etc., all that stuff adds up after a while. Add PMS to the mix and sometimes I'm shaking my fists to the sky screaming, "For real??!!!" I definitely try not to focus on the pain; but sometimes it's really intense.

I had been looking forward to going to see the Dalai Lama with my big cousin Bryan for the last two weeks. I knew it would be good for me to get out the house and also to see the Dalai Lama speak. I took a couple of Naprosyn (anti-inflammatory pills) so that it would be easier for me to get around. We had such a good time, and his holiness spoke about it being a human right to have happiness and joyfulness. He talked about how having a calm mind helps to improve the quality of life and your health. It's nice to have the Universe confirm that you are on the right path, doing the right things (even if you were just shaking your fists towards the sky and crying like a baby with colic the night before...lol). I thought about how even on the walk there to the convention center, although it was slow and painful, that I was very grateful to be able to walk. That I am truly grateful for my body. The whole sha-bangy-bang. Having the break in the intensity of pain helped with that; as well as getting out and noticing how I am learning and have improved in taking care of myself. That includes taking my time, letting myself be and know I'll be ok. There's a gracefulness in my self-care/self-compassion that I see developing, and that gives me joy.

It's also nice when people come in your path, like my cousin, who understand the issues and can relate to me. I like to listen to him talk about part of his journey and development. Mainly because I know that the truths and revelations that we receive sometimes are painful to learn in the moment. But they're still worth it, life still has so much to offer if you are open to it (even if you were just shaking your fists at the sky and crying like a baby with colic the night before...lol).

What I'm realizing is that sometimes you gotta just walk through it. Sometimes it sucks. Sometimes you cry. Sometimes you shake your fists at the sky. Sometimes you want things to just be different. But, at the end of the day, all these steps lead to where I'm going. Learning to love and care for myself better helps me be a better world citizen. It helps me be a better family member, friend and lover. It helps me be a better me.

Step 5: Beauty is as Beauty Does

Today I was able to get up and go out for a walk around the block; this made me very happy as the last few days had been pretty hard core physically. What I love most about this process is really being able to stay present and figure out the best ways to take care of myself at any given moment.

Walking around the block typically isn't the most inspiring thing where I live. This part of Oakland isn't known for its sweeping views. But, beauty is where you look for it. So, being a teacher, I gave myself a walking assignment - to find five things that I thought were beautiful. The interesting thing was, when I started looking only for things that I thought were beautiful, I noticed all these wonderful details around me. Cracks in sidewalks, fallen pine needles, flowers reaching through gates and bars. It really made me realize in that moment, whatever you are looking for you will see.

What if the same is true with Lupus? What if I look for best ways to live and thrive? What if I look for ways to have patience with myself (even on challenging days) and have the best possible day that I can each and everyday? I think my life could look different. I think I could be happier. And the good news is, it's able to happen now, from where I am with what I already have.

That's pretty awesome...

Step 4: Ain't Nothin' to it But to Do it...

After a pretty hard night last night, I had to rest most the day. But, I still wanted to make sure that I did something towards my training today. Yesterday I had done some of the Yoga DVD. I knew I actually had to get out there and do some walking today. The issue is that my left knee has been swollen and tender, giving me problems through the night. I was determined to get out there today,even if just for a little bit.

I committed to walk the four blocks around my house. That I could do. In my mind, I wanted a larger goal, maybe 8 or 10 blocks, but I had to remind myself that this process is about listening to my body and doing what's good for me; and besides 4 blocks would be better than no blocks.

Also, the likelihood of me using a walker during the Walk itself is quite high, so I wanted to practice with one today; but I'm not ready to be in my neighborhood with a walker, so I just used a travel cart that I have. That actually worked well! It's lightweight and doesn't make me feel as self-conscious as an actual walker. So I got out there, did my blocks and came back home. Yay!! I'll do it again tomorrow, and keep on keepin' on! Yay!

Step 3: Silence/Let go of the Lies

Last night, I wrote down a list of things people have said that have been hurtful around me having Lupus. A few things came from that; I realized how much support I've had around my health issues--MUCH more than have not been supportive. That made me extremely grateful for all the love that is around me. The second thing was some of the things that were said were nothing more than lies upon review.

But the BIGGEST thing that came out of the list was the lies that I told myself. OUCH! There were tapes that I had in my head that I chose to believe because I was having some limitation or because one or two people said something when I felt REALLY vulnerable.

In getting rid of the lies, here's what IS true for me:

- I should listen to my body for cues on how much to do (exert) myself.
- I am deeply and dearly loved by many, and I will continue to experience that love and support in future intimate relationships
- I am able to and am releasing the lies/hurtful things my last partner told me during our relationship. His perspective does not define me.
- I will have a family when the time is right.
- My body is in a constant state of healing and wellness.
- I will be able to thrive medication-free in the future.
- I continually seek ways to create wellness for myself and my environment.

Even just on the third day of this, I am feeling the power of these choices. It's okay to take my time to my goal, my own "finish line". Only I can choose how beautifully I live my life...

20 years of lies can be wiped out with one moment of the truth ~ Yoruba Proverb

Step 2: Assess Where You Are

The next thing I did today was figure out some logistics. For one, I found out the walk is for three miles; which right now is a bit too long for me to walk. I think I can successfully walk a half-mile. I may be able to do more when I get there, but I think it's good to have a clear goal. My best friend Darice is going to walk with me. That is very exciting. We're calling our team the "Noble Mistresses" from the animated film we love "Kirikou and the Sorceress". My next steps are to 1) alert my friends and family; and 2) do some exercising to get ready for the walk. Something slow-paced and helpful to my stamina for the walk. I normally swim at the Berkeley Warm Pool, and do a Healing Yoga DVD for Aches and Pains that I find very helpful. Also, Gentle Fitness with Catherine McRae is good for me too. This whole thing means a lot to me for so many reasons. I feel like Rocky Balboa...lol.

This is the first time I feel like I'm doing something in support of "lupus" itself, with the ability to be patient and kind to myself. For once I don't have to be embarrassed or feel like I have to solve all my health issues overnight. THIS IS A BIG DEAL!

Today is the First Step

My name is Tiffany Golden, and 20 years ago I was told that I had a disease called Systemic Lupus Erythematosus, or Lupus SLE. I was just beginning my teenage years and didn't understand why I was so tired ALL the time, and why I couldn't walk well, or why my joints would swell to the point of locking up. A lot for a teenager.

Over those 20 years, it had went in and out of remission; I even had a period of seven years with no known symptoms. After I had turned 30, it seemed to be flaring more often and longer to recuperate (in addition to being a much more stressful time in my life). These last six years have taken a toll on both my self-image and self-esteem; having a pronounced limp has been a large part of that, just like having an unsupportive partner contributed as well.

But, despite what got me here, I do know that I am in control of how I feel about myself and how I treat myself. I have learned to have much more compassion towards myself and treat myself kinder. However, when it comes to other people, I somehow haven't developed the greatest boundaries for myself. For instance, I was having a tough day last Saturday and went to Starbucks to write. I ran into a woman from the "health" community, and she asked what was going on with me. I told her, even though I didn't really want to. She asked had I tried meditation, obviously being a bit condescending--especially when she said, "Well, it really takes consistency." And while she may have thought she was being helpful...she wasn't. At all. I have tried LOTS of things. Cleanses, fasts, lifestyle changes, exercise, positive outlook, medication, various forms of therapy, raw foods...a lot of things--things that have been extremely helpful. I felt like she talked to me like it never occurred to me to take care of myself. I felt shamed because she had her functioning joints and it seemed that she was looking down on me.

Whether or not it's true, only I can change how I feel about the Lupus. Today I saw a Walk for Lupus Cure that's going to be in San Francisco next month. I want to be there, walking. For me. If I can change the way I look at Lupus, and approach it, I can build my own confidence and be a better advocate for myself.

This blog is about that journey.