Tag: crps

April 22, 2013

HAWMC Day 22: All that jazz

I am attempting the Wego Health Activist Writers’ Month Challenge. A post each day in April. So, now that I told you I am going to do it, I oughta follow through, right? Today’s prompt is to write about something ordinary that’s inspiring to you, something simple, perhaps overlooked, that fuels your activism.

I think that all you need is love. Truly. If I wasn’t for the love of my family and friends, I wouldn’t be writing, working or creating. Love gives me the strength to keep pushing on.

My love of life is what keeps me baking. Creating. Sharing.

And I hope that you can find the same love of life. And that it inspires you to reach for whatever it is that you want to do.

April 21, 2013

HAWMC Day 21: Adversity

I am attempting the Wego Health Activist Writers’ Month Challenge. A post each day in April. So, now that I told you I am going to do it, I oughta follow through, right? Today’s prompt is “The flower that blooms in adversity is the rarest and most beautiful of all.” – Mulan. True or false? When do you bloom best?

Loneliness launched this blog. I was living far away from my friends & family. I had nothing to occupy my time, so I started writing.

Rude words got me to share my health journey.

A lack of understanding at my last job spurred me to apply for the job I have today.

So, I guess you could say that adversity has been a catalyst to getting my life back together. To becoming the person I am today.

Although, I would really like to believe that I was always headed here, some of the worst moments have led to the best.

And these recent moments have been pretty spectacular.

April 20, 2013

HAWMC Day 20: Burnout

I am attempting the Wego Health Activist Writers’ Month Challenge. A post each day in April. So, now that I told you I am going to do it, I oughta follow through, right? Today’s prompt is to write about burnout. What does it feel like? What are your burnout triggers? What gets you OUT of the pit of despair when nothing is going your way?

In college, before I was gluten-free, my friends all knew that if I was studying for a test there would be cookies. If I had a long day at work, there would be brownies. If I had a fight with MammaCakes, there would be a cake.

When I went gluten-free, I turned to knitting to unwind. It was a little better for my waistline.

But, then I learned how to bake gluten-free. And my brownies didn’t taste like beans. My cakes weren’t gummy. And there was joy in baking again.

The magic of butter and eggs. Sugar. A small army of flours.

The soothing nature of stirring and whipping. Whisking. The motions of the kitchen.

So, if you are suffering from burnout, I offer you my tried & true burnout cure, brownies. I have my base recipe memorized, and they are endlessly adaptable. And you just need 1 pot and 1 pan.

Brownies are the best.

My favorites are Gluten-Free Mexican Spice Brownies, Gluten-Free Espresso Brownies and Gluten-Free Strawberry Brownies.

April 19, 2013

HAWMC Day 19: Vintage

I am attempting the Wego Health Activist Writers’ Month Challenge. A post each day in April. So, now that I told you I am going to do it, I oughta follow through, right? Today’s prompt is to post a photo and where you were with your condition and diagnosis.

These photos are all post-weightloss. The first two are from before the knee injury that started everything, and the third one was not long after the injury, while I was doing physical therapy for an IT band problem and a kneecap being out of whack.

I was diagnosed about 3 months after the bottom photo was taken.

There aren’t too terribly many photos from diagnosis to now. Partially because I have never loved getting my picture taken. And partially because being unable to run or workout due to the pain, I gained a bit of weight back.

These bottom photos are all from the past year. The top two are the most recent. I decided this year that I am taking my body back. And that I am going to love being me, no matter what shape my body is in.

April 18, 2013

HAWMC Day 18: This might come out wrong

I am attempting the Wego Health Activist Writers’ Month Challenge. A post each day in April. So, now that I told you I am going to do it, I oughta follow through, right? Today’s prompt is to write about a time that someone said something to you that they wished they could take back. Did you forgive them? Why or why not?

“This isn’t a good time for you to have your surgery. It’s not like you have cancer.”

I had been suffering from the non-stop pain of CRPS for nearly a year and a half. I had suffered through an intrathecal drug pump, 18 nerve blocks and a pile of prescription drugs. And to be fair, my boss did have cancer, which is always a horrible and scary thing.

But that doesn’t mean that my health was ok to be ignored. And I love my old boss.

So, when she was diagnosed, I took my time getting life together for my spinal cord stimulator implant. I did the psychological testing. I did the x-rays. And I started the process of fighting with my insurance to get everything all prepped.

All said and done, it tool five months from the decision to have the implant to the time I was able to finally schedule the surgery. I was finally going to have some relief.

But it wasn’t a good time. The place I was working was struggling financially. I was rebuilding all the websites that we had, but we had fired our in-house web developer. I was managing a creative team and making sure a newspaper got printed every day. My boss had reduced her hours after having chemo. I knew this.

But I needed to take care of me. So, I asked about scheduling surgery. I needed to give my body a break. and they told me:

“You know the timing is bad. We have websites that you need to launch. [Your boss] is not able to be here full time. This isn’t a good time for you to have your surgery. It’s not like you have cancer. You should really put it off”

But, really?

I’m not sure I forgiven the woman who said that to me. Why? Because I had been very open about the treatment process. What my condition was. How it affected my job. I had even gotten in trouble for tweeting about feeling miserable and just wanting my mom.

They knew how bad it was, and yet, because it wasn’t cancer, it wasn’t a priority. They didn’t understand, and I couldn’t make them understand. It took my boss coming back and telling me to take care of myself for me to finally get the treatment I needed.

I know it is time to move on and forgive. So I will try. Their ignorance was the catalyst for a waterfall of good in my life.

April 17, 2013

HAWMC Day 17: {nearly} wordless wednesday

Today’s loose interpretation of the rules is bringing you one of my favorite quotes from my favorite TV show. Because it exemplifies the attitude that I strive for every day. Look on the bright side. Stay hopeful. Keep on dreaming.

Also, if you haven’t submitted your favorite inspirational quotes, please do! I am working on a new project based on these posters I designed last summer.

April 13, 2013

HAWMC Day 13: An acrostic

Blogger say, what?! I haven’t told you enough about my Crazy Ridiculous Painful Soul-Crusher enough already? I think I have.

See what I did there? It was clever, right?

Good, now that we have that business set aside, I want you to know that I appreciate all the support from my regular readers as I share some bits about my health in the hopes of showing others that a normal(ish) life is possible despite so many odds.

Now, I need a favor. I am working on a new project. One that involves my clever little quote images that I have been sprinkling throughout these posts. I started making them as a challenge to myself last summer, and I wanted to make a proper project out of them. So, I have purchased a domain and will start posting new images shortly (as soon as I have worked out how often I will make them).

I would love it if you would submit your favorite quotes. They should be inspiring(ish), hopeful, maybe even funny, but above all, they should be positive (and not overly religious – this is not a project about faith or religion).

April 10, 2013

HAWMC Day 10: {nearly} Wordless Wednesday – I feel pretty

I learned a little something about myself when looking for a picture to post.

I tend to make faces when a camera is in my face. All sorts of silly i-don’t-feel-so-pretty faces. The kind of faces where you try to make it seem like you have a devil may care attitude. When all you really want is for the camera to go away.

And that is in the pictures that I let get that far. Normally I prefer to be on the other side, snapping away. Finding and framing a world that sometimes I feel like I am not part of.

But every now and then, a picture where I am not making a ridiculous face slips through.

Enter this photo. It is me and my newest cousin (my cousin-in-law if you will). Dressed to the nines.

Having fun despite the pain. Living life and not letting it pass me by.

April 9, 2013

HAWMC Day 9: Fresh-baked Care(giving)

Advice the only way I know how to give it, as a recipe.

A recipe for good care giving

Ingredients*

A healthy dose of love: This can be any kind of love. Parental love, sisterly love, the love you have for a friend, truly-madly-head-over-heels love. Maybe even tough love. With one condition, it must be unconditional.

Plenty of patience: You might have to look around because patience, although a virtue, can often be in short supply. This is one of those items that you just have to splurge on. Top shelf patience is rewarded in multiple ways – better communication and understanding are just a few. There are waiting rooms to be endured. Test results that just won’t show up. Panic from the patient about any number of things. Rescheduling outings and appointments. This particular ingredient has the power to transform a patient’s experience.

Sweet Tarts: Some people might argue with me on this one, even though I am certain I am right. After multiple procedures, hospital stays and general bad-health days, I can tell you, most assuredly, that if you show up with some Sweet Tarts, you have already shown you can take good care of me.

*MammaCakes always says that the path to hell is paved in good intentions. Those pesky good intentions. They aren’t really good in anyway, other than to make the intend-er to feel better about their lack of action. Never substitute good intentions for one of the above ingredients.

Method

Gently stir the ingredients until they come together. Being gentle is the key. Words should be used to encourage and inspire, not chastise or shock.

Taste and adjust. Some days you need more love and less patience. Some days you need the opposite. Some days call for tough love. Some days call for a hand to be held. The best care is always evolving.

Bake. Time is important. It might be the single most important way to show you care. Make time to do things that are not related to the illness. Make time to sit and talk. Make time for yourself. As important as it is to make time for the patient, their needs cannot be allowed to consume you.

April 8, 2013

HAWMC Day 8: My body is ridiculous

I am attempting the Wego Health Activist Writers’ Month Challenge. A post each day in April. So, now that I told you I am going to do it, I oughta follow through, right? Today’s post was to write about the animal that represents your disease.

My disease is no animal. Allegorically or not. I tried to tie it to food. To animal crackers. To a fable or proverb. Anything.

And then it hit me. I suffer from creepy dashboard pig.

(Yes, I took this picture in my sister’s car. And, no, she probably will not be super pleased that I am making this analogy.)

Please, just hear me out.

My body is ridiculous. It doesn’t do what it is supposed to. Some nerves think that every signal should be a pain signal. And not just any pain signal. Intense stabbing, searing, burning pain.

My body is ridiculous. It hates pants. It hates gentle breezes. And it really, really hates anything that is different than the minute before.

My body is ridiculous. There are some days. Some precious days. Where the pain calms down to a simmer. When I can hope that those nerves have just had enough. When there is dancing and and being silly.

My body is ridiculous. It requires a battery pack, a remote and supplemental wiring to make it through.

My body is ridiculous. The disease has no purpose. There is no battle to be won. No invading microbes to be beaten. No warnings it needs to pass on. The disease isn’t there to take over or to change things. And yet, it stabs and slices. It burns and burns.

My body is ridiculous. It can’t seem to make the CRPS realize it has overstayed its welcome. Like that creepy dude you went to dinner with. The one who kept extending the night.

My body is ridiculous. And the best analogy I could find was a wiggling pig dashboard ornament. A ridiculous beast with a giant knife. Existing only for stabbing and slicing. Hanging around like the creepy dude who didn’t get the hint.