All in a year

I started this blog just a tiny bit over a year ago. Reading my first post I shook my head in disbelief at all that's happened since I wrote that. I had no answers at the time. I just knew that something was very wrong with my body and I was struggling to get the help that I needed. Oh how right I was! And luckily for me that help did come. 

A year ago I said "my body just decided not to be doing so well"  that could have been the biggest understatement of my life. In fact I'm sure it was. What was really going on was: 1) I had a benign meningioma brain tumor growing in my left temporal lobe. 2) I have Rheumatoid Arthritis. 3) I have a genetic disease called Metabolic Myopathy. Soon after that post my muscles would begin failing me and it remained a mystery till November just what was going on. 

Reading over my frustrations, anger, hope, struggles and yes... fears I feel nothing but empathy for myself. Frankly I still can't believe that I went through brain surgery just seven months ago and have metal plates and screws in my skull. It's hard for me to wrap my mind around (pun intended.) Or that I'm technically also a mutant with my mutated genes causing the metabolic myopathy. I mean really? Was the TB just not a big enough of a deal?

I still feel like if people knew the whole story of what I've been through in the last four years they would think I was making it up. It's just too fantastic that someone can go through everything I've been through health wise. I fear they would think I'm faking it or lying. But it's all true. And I'm still here.

That's the best part. I'm honestly happier than I was four years ago. I'm also a better person. I'm less judgemental, more fearless, more forgiving, more patient and more empathetic than I was four years ago. I think great suffering is like that. Either you give in and struggle in the darkness full of fear for your life or you embrace the wonder that is our time here. See the miracles all around and love till your heart just can't love anymore. I chose the second one. 

I have my family, I have my tools, I have my spirit and my body is still here doing the best that it can each day. That's pretty magical really. I'm one lucky woman!

Wheeling through arizona

My husband and I recently took our second trip with my electric wheelchair "Ariel." The first time we took her to Oahu, Hawaii. This time we went to Arizona. Even though my Metabolic Myopathy has improved with the mega dosing of Q10, I still can't walk long distances or for a prolonged period of time. That's where Ariel is super handy. I also have my matching cane for shorter distances, which is a fantastic tool.

I have a travel bag that I bought with my chair. It was worth every penny. It keeps her safe in luggage handling and makes it easier to transport her for the handlers (and my husband.) Here he is putting her in the bag at the gate before pre-boarding. 

Since I am able to get in and out of my wheelchair, with regards to TSA I hand her over to them for a full check while I go through the body scanner with the able bodied people. I found this is easier on me than going through the full check in my chair as I have to get up and down a lot and that's hard. It's also usually faster. That is it's faster IF they don't get some weird chemical reaction from your chair, and then make you go through ANOTHER chair check and a full pat down (true story that happened on the way home.) 

It's great to have my own chair in the airport because no one has to push me and I can handle my own suitcase. So far no damage has happened to my precious chair either. YAY!

In Hawaii (my first chair vacation) My husband bought this plumeria sticker for me and I put it on my chair. The plan is to get a new sticker each place we go!

It was easy to get around our hotel in the chair. Though just like when we went to Hawaii I don't think our room was actually a handicapped room. There were no bars in the shower (which I REALLY MISSED!) And I was glad I was able to walk around our room on or own or there could have been some issues. I think it's best to book on the phone with a real person and request an accessible room vs online. Next time that's what I'll do. But this time we were on the first floor which made a big difference. Elevators are doable, but a pain and who needs pain on vacation?

We more or less staid around our hotel for this visit so I didn't have the issues of getting in and out of shops that I had in Hawaii. What few things we did do in the downtown area were 100% accessible. Things seem nice and roomy in Arizona with very wide sidewalks, wide streets and accessibility in mind. I appreciated that. 

All the hotel staff were very friendly. The lounge chairs by the pool were a bit tricky to get in and out of, but I managed. That's where my cane came in super handy.

And like I said before, I also wore a bikini for the first time since I was about three I think? Never in my adult life have I worn one. Never is too long if you ask me.

Fearless woman that I am (thank you brain tumor) I also got a new tattoo!

PS: We flew Southwest this time and I FAR prefer them over any other airline so far. They were very friendly and it's open seating. They're serious about people with disabilities going first over people with children (who think they should get to go first for some reason.) That means I got a seat right up front (THREE CHEERS FOR SHORT WALKS!!!) With extra leg room which I dearly need when I fly. I highly recommend them.