Why I Take Selfies

Today, I had to take steroids. For the third time this week I ended up walking around the house using my wedding cane. It was terrible but the steroids helped and I’m keeping my legs elevated.

Another thing about today and the other days of the week I’ve used a mobility aid, whether I’ve left the house or not, I’ve done a full hair and makeup getup, and worn a pretty dress. Yesterday I tried the Pinterest listerine pedicure, which exfoliated my feet but turned them blue, and painted my nails red. I’ll probably stick to Korean feet masks.

Every time I make myself pretty, I take a selfie because of all the extra effort that went into it, especially if it was on a bad day. I am proud of the work it took to doll myself up, whether it’s a pedicure, skincare, an outfit, my hair, my makeup, or a mix.

Going back to being a child, I have found strength in my femininity. Many people denounce selfies as vain, but after my illness, it’s simply me saying, “hey, I did it!”

I’m not looking for attention or accolades. Just the fact that I did it for myself and have something to look back on is enough to help me fight my battle against chronic illness.

Do I always do this? No. But it helps when I do.

Whatever helps you take a step forward, do it.

Wedding Planning for Spoonies: Inspiration & tips for the chronically ill and disabled

My wedding planning book is going through a few iterations right now. I hope to still work with my editor after doing something really really stupid (in a pain flare I should never email people at night). The plan is to focus on mobility aid users and the chronically ill. It casts a wide net. There are many conditions specifically included, but a few from the categories can be chosen to apply to someone whose condition is not specifically listed.

I’m a bit nervous about the rewrite as it’s a blow to my ego, but I have to remember the point is to help people.

I do think this book could be a game changer if I work hard enough on it.

I’d also appreciate comments on whether or not excluding sight and hearing still makes the book marketable, and how much you like the new title.

If you’re interested in helping, email me at spoonielifestyle@gmail.com.

The Disability-Friendly Wedding Planner: Even New Directions

I am back in the saddle again with my book, The Disability-Friendly Wedding Planner, and I’m telling you, it’s gonna be a long road.

The book’s purpose is to help disabled and chronically ill individuals plan their weddings, but I’m not entirely sure it’s doing that right now. I’m talking to one agent who hasn’t gotten back to me yet after submitting my manuscript, and I nervously await the next steps.

Additionally, or not additionally rather, the book has been slashed a bit. It no longer covers as wide a net of disabilities as I had once liked to. Now it only covers mobility, chronic illness, and chronic pain, which when you think about it is pretty huge. There are lots of chronic illnesses and chronic pain conditions out there, and lots of varying degrees of mobility.

I have lots lots lots of research to do, and if you’d like to help, email me.

Mobility aid babe

As an anxious Spoonie bride, bewildered graduate student, and fearful sleeper, I own many titles. This weekend I tacked another on to my name.

Mobility aid user.

AKA

Mobility aid babe. It’s taken a good bit of mindfulness to come to this conclusion.

I had my bridal shower, and I was convinced I should not go if I could not do my makeup. I was able to prettify myself, but the problem remained that I was in extreme pain and lightheaded.

I decided to grab my dad’s hiking stick and use it as a cane. Thankfully everyone was understanding and only two people asked questions.

Today I attempted to see my friend and I had to use the same hiking stick to cross a parking lot. It was basically an instant KO. The poor hiking stick fell multiple times while we ate at a restaurant and strangers helped me pick it up as they spoke to me like a two year old.

I am not happy about this. Fiancé has been talking about getting me a motorized wheelchair for a while now. As for my opinion on this, it is still no. I have asked for occupational and physical therapy and am hoping it helps.

When my fiancé and I are together we like to dance – he scoops me up into his arms, I cling to him and we sway to our favorite love songs. Before my illness I went swing and salsa dancing. He took dance classes, and is a great dancer. But I mainly love the rhythm, the movement, and his arms.

I know that no matter what mobility aid I rock, he will still dance with me.

Pocket full of starlight: there may be times when you feel like other people define you by your illness, but the ones who matter won’t.

Pocket full of darkness: it’s hard to come to grips with needing a mobility aid, especially if you were once a fit, active person. It’s okay. Feel all the good and bad feelings and take them at face value. I’d worry about you if you weren’t a little freaked.