Monthly Archives: March 2012

Losing Something… Someone You Can’t Replace

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Today, I take a step back from the past 9 months of AS struggles, successes, and frustrations to reflect on losing something… someone you can’t replace.

A week and half ago I was met with the end of an era. My grandmother, 90 years old, and the strongest most amazing woman I have ever known left this world for another. Today I write in remembrance of her- all that she was and everything she stood for. I reflect on how a few days ago, my mom called me into the closet of my grandmother’s apartment to show me a piece of paper with the phonetic spelling of Ankylosing Spondylitis handwritten in my grandmother’s writing. She always cared so much and worried so much about all of us. She was the epitome of love and caring. And today, I share with you my speech from the funeral, in the hopes that if you didn’t know her, you will understand, maybe even a fraction, of how awesome she was.

My brother, myself, my cousins- we are so extremely lucky. We were able to spend a good quarter of our lives with Grandy and Grandmother. When we were younger, we were involved in quite a few activities. Through every event, every concert, every game, every musical, and every play, no matter what, grandmother would be there, alongside grandy. 5:00AM Harvest Breakfast at the HS? No problem. They’d be there at quarter of…. Graduation ceremony in blistering heat? Don’t mention it. There with smiles and bursting with pride. Basketball game with coaches screaming and parents demanding more playing time for their kids? They were there in their element- cheering and yelling, wearing their green and white to support the team. Before every home game I’d be going over plays in my head, and my teammates would say, hey, I just saw grandy and grandmother- they’re sitting in the usual spot! That’s just what they did. My grandmother wasn’t just my grandmother it seemed, she was everyone’s grandmother.

A mere week before she passed away, all of the grand kids were able to spend some time chatting with her. When it was my turn, I walked over and the look on her face was just priceless. There she was, not able to jump up and walk around, but that look. that expression said it all. It summarized every single time I had seen her for the past 28 years. A huge absolutely huge, ear to ear grin. That look of “I was looking for someone to make my day, and here you are.” That feeling as though you were the only person in the world that mattered. She always had the look.

After exclaiming how happy she was that she was able to see all of her grandkids that weekend and asking how my weekend was, she looked at me and said “Meghan, I want you to know that I am completely at peace. I am comfortable, I am happy. and I am ready to see Grandy.” We spent the next two hours talking about life; work, the new house we moved into, traveling, adventures. She told Andrew and I about the days of traveling around the world with Grandy. And still, at 90 years old, she recounted the most intricate details of their travels. The appearance of the “water guard”  outside their door in Thailand. The grandeur of the Taj Mahal. The people they met, the places they visited, and the things they did. My grandmother had the most amazing memory, a trait which I believe my brother has inherited. She was like a walking diary and the stories that she had to share you could just listen to for hours. She experienced so much throughout her life and genuinely loved every second of it.

I could literally stand up here for hours and share with you story after story about the memories of my grandmother like the time and meticulousness that she spent decorating eggs at Easter or the year she made me pie crust for my birthday (just the crust, simply because I loved it). There are stories about the drawers in an old cabinet that she would stuff with little toys for the grandkids to play with while the parents were talking and there are stories about the jars of gumdrops she kept on a shelf that was just too far out of reach- and yet, her step stool always seemed to be stored underneath that cabinet– personally, i think she did on purpose so we grandkids could reach them. These stories will no doubt be shared with not only her great gandchildren but every generation from here on out.

The day my grandmother left this life was a gorgeous day. It was chilly, but the sun was shining and there was hardly a cloud in the sky. It was what some might call, a perfect day. It matched my grandmother to a t- she was always perfect. Perfect in everything she did, everything she said, all the love she showed. She loved with such passion, she listened with such care, and she always gave everything she had. Although we don’t know her exact thoughts as she drew her last breaths, I’d imagine they were something like– I had a wonderful life, I did everything I came to do, my grandchildren are happy, I’ve seen them all grow up into beautiful adults, my daughter Beth is everything and more than what I’d hoped she become. Her final thought was probably, George, I’m coming home.

Despite feeling as though my Grandmother was a gift that was taken away from me, in all actuality, I realized that my grandmother was a gift that was given to me. And when I think about it that way, I find comfort.

I love you more than anything grandmother. You were a beautiful woman, a loving wife, mother, and grandmother, and a true inspiration. Thank you for everything.

The most loving couple you could ever meet

Seizures and Blood

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Yesterday, I had a general check-in with my Rheumatologist to check and see how the Enbrel and Prednisone pack had worked out and in general how I was feeling. I never before arriving that I was going to have to deal with labs. For some folks, having blood drawn is as easy as brushing your teeth. I am NOT one of those people.

You probably remember from some of my previous posts, just how much I dislike  HATE DISDAIN LOATHE being pricked with needles (in fact the post was entitled,I hate needles. seriously.”… which is actually rather humorous considering I have to inject myself once a week (although sure click self injectors ARE MUCH BETTER than syringes, I will say).

I don’t know what it is, but I could never handle watching people have needles stuck into their arms or hands- it makes me queasy, uneasy, and nauseous. In fact, even as I was looking for an image to include in this post, I tried to find one of someone having blood drawn and I started to feel all clammy and nauseous. Thus, you are stuck with an SI joint image- because well, the SI is important to me :0)

So back to my appointment. I checked in and my Rheumy told me that we should keep on the path and see if Enbrel can’t continue to improve my situation. If by the next time I come in, I do not significantly improve, we will look for another method (I am confident that Enbrel will work). I will continue on with my Voltaren gel as well as my Nambumetone. I also talked to him about my stupid cold sore. I got it last weekend and it’s hanging around. He told me that it should go away soon, wrote me a prescription, and told me that prevalence of cold sores is normal (whatever “normal” is). In addition, he inspected a hard lump that I discovered under my right lower jaw and determined that it appears to be an infected lymph node. Bacteria gets into the cold sore and infects your lymph nodes (awesome). Again, it should get better on its own over time, but if it doesn’t, I’m supposed to let him know.

Then he said that phrase that I l.o.a.t.h.e.: Did I get labs last time you were here? No I replied in a very sad quiet voice. He chuckled and said we should get them and go from there. So, I begrudgingly went out to the nurse’s station and sat in my chair and instantly felt the anxiety coming on. I tried to push it out of mind reminding myself that the last two times, I didn’t black out at all. The nurse was super friendly and put the needle in quickly and started talking to me. In an effort to avoid the “black spots”, I looked up at the ceiling. Everything was fine until it wasn’t.

All of the sudden I felt myself passing out. I state such and then what happened next is really hard to explain. I felt a jerky sensation and everything was moving really fast and I couldn’t stop my body from “freaking out.” Then everything went dark. I woke up to smelling salts, 4 nurses, and my doctor standing over me asking me if I was ok and how did I feel, etc. They had my legs hoisted into the air (thank god I wore pants, right?) and brought out orange juice, the blood pressure machine, chocolate, and fluids. They proceeded to get me right side up and seated and then calmly said that I had experienced a mini seizure. That they could be brought on by extreme stress and anxiety. It was one of the scariest moments of my life. I don’t like not having control. Yesterday, I lost controlI would prefer not to have that feeling ever again.

So, a while later, I left the doctor’s office with their consent that I was OK. I went straight to the deli and got a sandwich. Then I felt terrible all day yesterday. Now I don’t ever want to go back to that office again but I know I will and I will freak out the next time I get blood drawn. Ugh. Why hasn’t someone developed a tool that can run over your skin and “scan” your blood and automatically read the test results. I’m going to invent that.

Either that or get a prescription for Valium.