A Couch With a View: On How It’s a Miracle I Made it to 36……

It was literally the stupidest freak accident ever.

Seriously.

A trickle of water is the reason that I am living on the couch with my foot up for the next week.

Yeah. I told you it was stupid.

But let me rewind. One thing that you need to know is that with my Spina Bifida, one of the symptoms is a lack of feeling in my feet from the top of my toes till about my ankle.

So Monday afternoon I drew myself a bath to get ready to go out. I got in and went to turn the water off. I was in a hurry and didn’t push the knob in all the way, there was a steady small trickle of water coming out of the faucet. I paid it no attention and continued with my bath. It wasn’t until I felt the trickle of water move over my ankle that I realized how hot it had been. So I quickly moved my foot out of the way and turned the faucet completely off.

But the damage had already been done.

I only noticed my skin was red, so I thought that was the extent. It wasn’t until I got out of the bathtub and dried off that I saw the blisters forming. I texted pictures of it to our doctor friend and she told me how to proceed. I soaked it in cool water and didn’t cover it with a bandage till I was ready to head out the door.

As the evening progressed, the blisters started to swell. The next day I was told I’d need to keep it wrapped for a week and elevated, which means I can’t wear shoes. And will be confined to the couch till Tuesday.

Tuesday. 

That’s 5 more days. Which doesn’t seem like a super long time and with the stress of life lately, that seems like it would be pretty relaxing. But I’m beginning to get bored. There is only so many episodes of Cheers and CSI that I can take before my brain starts to turn to mush.

Not to mention we have two cats that fight like, well, cats.

And so I sit and write my blog. Pondering how miraculous it truly is that I managed to make it to age 36 with pretty minimal damage.

“There but for the Grace of God go I” (John Bradford)

Photo on 2016-07-26 at 20.36

My view from the couch for the next week. But isn’t Riley adorable? 😀

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To the Woman That’s Gone Through Her 3rd Change of Clothes for the Day…..

Good Tuesday to you all!! While both our girls are sleeping soundly, let’s get into the topic of the day!

Do you guys remember when I wrote that piece to the girl with Spina Bifida? Remember how I had said that was the most vulnerable I’d been on my blog? Well, after letting this one sit in my head for a month or so, I think it’s time to release it. Today’s blog will be the most vulnerable I’ve ever been, but I’m writing it in hopes of helping others dealing with the same thing. So, here it goes…..

My disability has changed my body in several ways over the years. I’m not able to move around as much as I could when I was a kid. I use my wheelchair more frequently now. My bladder has also changed. This has been one of the most frustrating changes.

As women age, their menstrual cycles sometimes shift to a heavier flow or more painful cramps. For me this change manifested itself by making my bladder gush forth several times a day during my cycle. This has gone on for many years. One benefit of this is that it is so consistent that I know my period will begin shortly after this occurs. But it makes it no less frustrating.

See, on the worst days of this, I end up changing clothes at least twice. Usually more. Any liquid that I consume races right through me. It gets to the point where I just sit at home, trying to keep my mind off things. I don’t drink much liquid on these days for fear of changing clothes again. I pretty much live in the bathroom on these days.

I have taken medication to fight off these bladder spasms. It worked well for years, but then my insurance company quit covering it and I had to switch to a new one. This new one works pretty well, but is not as long lasting as the first. And when I’m in the throes of a long day of changing clothes constantly, I can get so into my head that I forget to take it. (In Real Time: Can you believe just sitting here writing this I had a pretty sizable spasm? Calm down, bladder! 😛 )

On these days, I’m reminded why we (my husband and I) were chosen to remain childless. There is no way I’d be able to take care of myself and a child on these days.

So dear female, I know you are tired and frustrated from constantly visiting the bathroom and changing into yet another pair of clothes. I know you feel unattractive and less of a woman simply because your bladder doesn’t work the way it should. But here are truths you need to hang on to:

1. You are attractive

2. You are worthy of love

3. At least you have clean laundry 😉

4. This too shall pass

If you are currently going through endless bladder spasms and mountains of laundry, you are certainly not alone. I’m rooting for you.

Cheers!

Embarrassed spider image courtesy of cartoonstock.com

Reversing the Mirror: Who Am I?

Keep in mind these are my own opinions, based on my experiences, and aren’t necessarily indicative of everyone with a disability.

Last week I revealed more about myself, namely that I was born with spina bifida. Living with a disability from birth means a tricky dance between self acceptance and seeing what the world sees. You also run into 3 categories of people: 1. The Pitiers–those that look at you in a wheelchair and go out of their way to tell you they are sorry you are disabled, 2. The Prayers–these well-meaning people are those that, in public, seek you out and feel the need to “pray away” the disability, and 3. The Acceptors–this group most commonly includes your own family. They accept that you have a disability, and take you how you are. They don’t try to change the outside appearance. It’s important to point out that all of these groups of people are well-intentioned in their behavior towards those with disabilities. Today, I want to gently and in love, turn the mirror around from myself and look closer at what people in these categories, namely the first two, project onto the person with a disability.

I’ve encountered all of the above mentioned categories of people. As a person of faith, someone who believes that God doesn’t make mistakes, it’s hard to swallow the message you get when people come up to you in public, based on your appearance, and want to pray for you. That message? “You are obviously in severe mental pain because of your disability. Your disability says to me that something is wrong, so let me pray that God fixes your outward appearance and “heals” you of your disability.”  Let me just say that as a person of faith, I do believe that God can heal and fix any situation. That healing doesn’t always look the way we want it to or expect.

Next I want to focus on “The Pitiers”. This unique group of folks will see someone in a wheelchair and think, “Oh wow! I’m so sorry they aren’t able to walk like I can. I don’t think I’d be able to handle being disabled, so therefore, maybe they have a hard time with it too.” Now, to be fair, I think there are two categories of disabled people who pitiers come into contact with. Those that were disabled from birth, and those that became disabled after an accident or illness later in life. Since I am part of the first category, I don’t feel qualified to speak about the thoughts of the latter group.

As someone with a life long disability, here is what you need to know. Being disabled is all I’ve known. Of course I have days when I feel like I want to be someone else, but don’t we all? This doesn’t mean that it’s always been an easy ride. Being born with a disability has had, for me, one drawback. Since it’s all I’ve known and my family accepts me for who I am and has worked hard to treat me exactly like my other non disabled siblings, I began to have the mindset that somehow I was gonna grow out of my disability. Weird, I know. Whenever I’d have a dream at night where I made an appearance, I was not disabled. I was completely able-bodied.

In high school I remember one night I had a thought so profound, it felt as though I was hit with a ton of bricks. The thought that I finally began to understand? “I am disabled. I’ve always been disabled, and there is NOTHING I can do to fix that.” Whoa. Deep stuff. Needless to say, that’s a pretty difficult realization to process. I stayed out of school the next day to give myself a chance to digest things. My parents were super supportive and got me into counseling pronto. Through therapy, I learned I have a chemical imbalance that manifested itself through depression. The realization of my reality served as a smoke signal from my brain, telling me I needed to get help. This imbalance and resulting depression has nothing to do with my disability and I’ve since learned it’s likely genetic. 

I’ve been in therapy often on from that time to the present. I’ve learned to love myself. On the inside and out. To accept myself as I am. My head finally matched the person I was when I’d dream at night. Except that now in my dreams, I saw me. Wheelchair and all.

I hope this encouraged you today. Know that you are not alone and the world needs you in it. 🙂

Cheers!

Biology, Fire and Muppets

Living with anxiety, sometimes your imagination can get the better of you. Especially when you live with daily anxiety, and are disabled (Whoa! You didn’t see that one coming, did you? 😉  ).

Yes, since birth I have lived with spina bifida (SB); one of the most common of birth defects. Occurring in the first trimester of pregnancy–1,500 cases in the US alone each year–SB happens through a failure of the spine to develop properly. During normal development of a fetus, the spine forms in two sections and comes together, much like two sections of a bridge when they come together to enable cars to go across. In a fetus with SB, this process is either, A. disrupted completely, forming a gap in the spine, or B. formed completely, but the spine sticks out of a gap in the spinal column. This can happen anywhere on the spinal column, but the lower the lesion, the better the prognosis, as everything below the lesion site is effected; bowel and bladder function, as well as the ability to walk. If the lesion is higher on the spinal column, the patient can end up paralyzed, unable to walk at all. With the advancement of technology though, there is good news. Surgeons are actually able to go in and repair some SB cases in utero.

Fortunately, my lesion is located at the base of my spine. The opening was closed immediately after birth. I am able to walk, but not for long distances. I rely on a wheelchair for that. I also wear leg braces and use crutches for short distances.

So, how does this tie into anxiety? Oh honey, let me count the ways. I worry about safety on a daily basis. When I was a kid I worried about staying home alone for fear that someone would break in and I’d not be able to get out of the house. Because of this, I wasn’t able to stay alone in the house overnight till I was in…college. Basically because mobility is a challenge for me, my brain is a constant bundle of worrying about the what if’s in case of an emergency and I’m alone.

I also worried about what to do in case of fire. I remember one night I had just seen an episode of Rescue 911 where there was a fire rescue. That night, lying in bed I mulled over what I had just seen and wondered what I’d do. At that exact moment, the smoke detector in our house went off!! (Which answers the age-old question, “If you think it, it’ll happen). Turns out, the alarm didn’t go off because I had thought it to happen, but a few lost carpenter ants made a wrong turn going back to their home and got STUCK in our smoke detector. 😀 Still scared the stuffing out of me.

As I’ve gotten older I’ve realized that, while there are some things I can do to lessen the risks of disaster; walking in pairs after dark, making sure to turn the oven off after use, etc….when it comes down to it, I can’t prevent everything bad from happening. So what is the best solution? That’s easy. I simply LIVE. And appreciate every moment. Now if you’ll excuse me, I need to go appreciate that my husband just gifted me with season 1 of The Muppet Show.

Remember you are not alone. I’ll see you tomorrow!

Cheers!