Monday, July 7, 2014

A Letter - Dear Strong Beautiful Woman (who just so happens to be living with Epilepsy)

(Adapted from a personal email I sent out the other day.)

Dear Strong Beautiful Woman,

Thank you for writing to me the other day. Good to hear from you!

I experience a number of different types of non-convulsive seizures including the type that you mentioned having. I too have fallen down stairs and lost consciousness at the perfect moment, including in front of large crowds. I'm REALLY good at pretending that I must have tripped over nothing and I'm REALLY REALLY good at walking with two badly twisted ankles for long distances. Years of practice!

Normally those types of seizures I have once or twice a year. Although in May I had three of them. Neurologists sometimes lump these in with Complex Partial seizures or label them individually as Atonic seizures.

I have many types of other seizures though and some of them I will have up to 12 times per day. May was a month where I averaged 12 seizures per day. June was much better. I had 5 seizures TOTAL for the entire month.

Why was June so much better for me? Why did I have so many fewer seizures?

I stopped being so hard on myself. I started eliminating stress from my life. If it caused stress and was not absolutely necessary it did not belong in my life.

Some things were easy to delegate or decline.

Other things were not so easy.

Letting go can be painful. I lost a relationship in the process.

My top three daily priorities are to take my medicine on time, take a 30 minute nap and document any seizures.

You might think I spend most of my time at home, being careful, worrying about seizures and brain tumors and the next batch of tests my Neurologist has ordered. I don't. I spend most of my time surrounded by friends and family - laughing, living, going on crazy adventures.


Take care and don't be afraid to fall,

RQ

Tuesday, July 1, 2014

Uterusless Thoughts about Hobby Lobby

I fell asleep super early last night. Now I'm awake in my dark and quiet house.

I was thinking about this #hobbbylobby case, moreso about medical coverage. I HATE battling with insurance coverage. It's practically a full time job for me. I live with Epilepsy, a brain tumor or two and a mixed bag of other developing brain glitches. None of this is a secret so if you haven't heard about it you just haven't read my posts for very long. I'm fine by the way. How are you?

Anyhow, I was thinking to back when I was having some major gynecological issues. Uterine fibroids, menorrhagia so extreme that I required blood transfusions. I was in my mid 30s.

I already had my kids. My reproductive system was so far gone that I could not have more kids. I was really really sick.

Prior to ultimately having a hysterectomy, my doctor and I tried a number of birth control methods to battle with my extreme medical issues. I wasn't using the birth control as contraceptives - I was using them to battle major medical conditions.

I could not take generic birth control pills for my medical conditions. My options included pharmaceutical prescriptions for contraceptives similar to those that Hobby Lobby just won the right to not cover in their health plans.

I hate to think of women, really really sick women, that for no other reason than the whim of a corporate employer, being told that they cannot have an IUD or Ella to treat their uterine fibroids.

Instead the next options on the Corporate Approved Formulary of Medications Available for Women Because We Say So are GnRH agonists (horrible side effects including "chemical menopause" and bone thinning ) or a hysterectomy.

It is not good Science. It is not good Medicine. What it is is the inhumane treatment of Women.

*/

RQ