IN YOUR FACE

Last Monday, for the

Redefining Disability Awareness Challenge,

I shared a wonderful post from my very own parents, which I called:

Literally.

Last week’s question was answered by my parents, from the perspective of raising not one, but two children with a disability. They will be back again next week with another thoughtful response, but this week it is my turn once more.

🙂

Week Three: Part A

Q: If you have a medical diagnosis, do you see yourself as having a disability? Why or why not?

A: I probably would not be here answering these questions if my answer were no.

🙂

I have had several of these in my lifetime. The main one was the LCA, see

Here.

Then there was the Senior-Loken Syndrome, which included the renal failure and scoliosis.

These, to say the least, made my teen years interesting ones.

I have had many different diagnosis suggestions from neurologists with the headaches and chronic pain I have dealt with over the last ten to fifteen years now. However, unlike the obvious medical signs that I am blind or that my kidneys stopped working or when an x-ray clearly showed signs of a curvature in the spine, chronic pain shows no signs that can be clearly and medically spotted.

All of this is true and yet, I can not let any of it weigh, drag, or generally bring me down for very long. Whether it’s one medically diagnosed disability or multiple, if it is at all possible to get on with the business of living, I would highly recommend doing so, to myself and anyone else out there.

I did not come up with the term and I do my best to deal with it in this society of labels.

I am so pleased to participate in this awareness challenge of disability because I know I must live life, not just with disability, but in spite of it. I have had it in some form all my life and this makes it very difficult to live in any sort of denial, not that I haven’t had my moments. It just becomes a part of you and something that it would do no good to refute. It’s not that it wouldn’t occur to me because I am human and I have my bad days, but I know I must take control of my own life, to take the power away from the cruelty and the harshness that living with the label of disability often causes.

Yes, the short answer is that I have disability as a part of my life and the person I am. This is the cold, hard, in-your-face reality of the situation. I look forward to getting further into the issues surrounding life with disability, with some of the questions I have yet to answer, in the weeks to come.

Check back next Monday for more.

Next week my two parents will be answering the following, Part B:

If you don’t have one, how do you view the concept of disability and the people in your life who have them?

***

Speaking of in-your-face.

🙂

With September being Chronic Pain Awareness Month I wanted to share here an initiative being organized by the ones fighting to lessen the stigma surrounding chronic pain and a new way to hopefully bring attention to this silent and invisible scourge.

I asked to do what I could to help migraine, headache, and chronic pain ambassador JP Summers, and this is what she had to say:

“Here is the information for the Pie Challenge. I hope we get some media attention for the sake of all of us that are tired of our condition not being considered severe.”

Please check out the links below to see what’s being done:

Twitter,

Facebook,

and

Website.

Of course this is a take on the:

Ice Bucket Challenge for ALS,

because every person has their own unique story of suffering and deserves to be heard and helped, whether it’s by way of ice cold water being poured over the head or a pie in the face.

Whatever works and get’s peoples’ attention, right?

Wrinkle

As I lay on the examining table in the specialists’ office I wondered how many women would have done anything to be in my position. I was barely twenty and getting Botox. I had no wrinkles, at least if I were a couple decades older I could feel like I was killing two birds with one stone. Let’s just hope this would be the thing to magically relieve the pain.

Her Headache isn’t just a meaningless name. I chose it back when I was first asked to pick an email address, because I had suffered from chronic headaches for a couple years by then, and anything could cause one. Technology was one of those things to cause the most stress and stress was what could cause my head to throb like nothing else.

This particular neurologist was extremely empathetic and seemed like he was an expert in all things neurological. HE dealt mostly with accident victims, paraplegics, and such. HE examined me, bent my arms and legs in strange ways, commenting on how flexible my muscular-skeletal system and the connective tissue seemed. He asked me what I had tried for my headaches so far and I told him about the physical therapy and exercises I had recently been trying. I told him I had been doing the exercises I had been given by the PT and he asked if they were helping. I told him I hadn’t noticed much of a difference. His answer being, “So then why do you continue to do them?” I liked his down-to-earth relateability and medical manner.

I plan to write about one treatment I tried to treat my daily headaches, every Memoir Monday for the month of June. June is National Migraine and Headache Awareness Month. I feel for all the poor souls all over the world who live with headaches or migraines every single day.

He injected me with the Botox, giving me several little needles along my forehead, just below my hairline. The pain wasn’t a problem for me. I had many needles in my day, in spots all over my body, and the headaches were much worse than a few measly needle pokes in my scalp. This was supposed to relax blood vessels in the head and hopefully relieve some of the pain I was feeling. It wasn’t cheap either and we had to pay, not yet being considered a necessary medical procedure.

After a few treatments it was clear I wasn’t experiencing the effect the neurologist had hoped for and that I was desperate to find. It had been a worthwhile attempt and I must have gone wrinkle free for a few weeks at least, but the effect was lost on me.

I will be back next Monday to tell of another thing my doctors and I tried to get rid of the pesky nasty headache. I have lots of stories where headaches are the central element. This month I hope to do my part to bring awareness to the seriousness of headaches and the havoc they can cause for those who are forced to live with them.