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In Loving Memory

I was going to write about something completely different today. I had been preparing all week to write about some very good news I’ve been wanting to share with you all. 
Oh, how life suddenly throws you a curve ball.

Yesterday my childhood companion passed away from FIV (Feline HIV)

He really was the best kitty cat in the entire world and I can’t tell you how much comfort he gave me during my school years when I suffered from depression and my Arthritis came back with a vengeance. He slept with me every single night and was truly my cat. I’ll never forget the moment he came home for the very first time, rescued by a friend from a bush near the Metro Rail. As soon as my mother walked in the door holding a cardboard box and in it this fuzzy, grey kitten with a missing toe, she said, “He’s ugly.” I, of course, protested, “No he’s not! He’s beautiful!”       It was love at first sight. 
The day I grew up and moved out of my parent’s house and in with my highly-allergic husband, I cried knowing I would have to leave him behind. I hoped he would be watched over and not feel replaced by my new sleeping companion. All those years before of broken hearts and puppy love, I had still always told him that he was “the only man in my life.” 

The night before I took him to get put to sleep, my parents texted me and told me he hadn’t eaten in at least three days and was meowing in excruciating pain. A few weeks earlier, we had taken him to the Veterinarian to get a dental cleaning when the doctor told us he had a severe oral infection caused by his FIV and there was nothing we could do to cure or treat the virus. Even after the doctor attempted to clean out the infection as much as possible he was still having difficulty eating and was losing a lot of weight, but he had never gone this long without eating and I knew it was time. 
The next morning was so strange. Kiki had always been terrified of his faux-fur lined carrier and would meow VERY loudly just being in the parking lot of the Vet’s office. But that morning, he was so quiet, not making a sound. He seemed to be at such peace, and to me, it felt as if he was almost thanking me for ending his suffering and letting him pass on with dignity
In Loving Memory of Kiki Bubba, 4/10/2005 – 5/4/2014

    Because I have Arthritis, I know pain. I can relate to his suffering more than anyone. Sometimes, even I feel like if there was euthanasia for people, I’d want someone who loved me to end my pain and let me die. Not many people know that RA is a potentially life-threatening illness, with complications ranging from increased risk of Cancer to inflammation of the heart muscle leading to congestive heart failure. I can’t tell you how difficult it is living with a chronic illness that lowers the quality of my life as well as the quantity of my life. This isn’t something like Cancer where I’ll suffer through illness and physical pain for a few years and then either succumb to death or become a survivor through remission. Arthritis is something that is a part of me, that is so ingrained in the immune cells of my body that there is not hope of “beating it.” Arthritis is something I have to survive with for the rest of my life and hope there will be a life-long treatment that can control my symptoms. I’m not saying people with Cancer are less than people with Arthritis. They’re not to be compared. It’s like apples and oranges. None is worst than the other. They’re both horrible and I wouldn’t trade either one for the other. Although I can say there is something about death that seems peaceful to me. I guess it’s the thought that I’ll go to heaven and God will make me perfect like Him. Finally being able run and jump without pain. I like to close my eyes and imagine that’s how Kiki is living now, chasing birds and catching lizards like he used to, without pain. And that brings me great comfort, knowing he’s happy and watching over me now. 

The people who say, “Think of those who have a disease worst than you,”
are wrong. All illnesses, all diseases are not to be compared. 
We are all the toughest people I know. 

GROW: A Hobby I’m ABLE to Do

 I am definitely a hobbist! Ever since I was little, I’ve always been one to have several hobbies going at the same time. When I was 5, right before I got diagnosed with Juvenile Rheumatoid Arthritis I was really into gymnastics. Even at that age, I will never forget the disappointment that hit me when my Rheumatologist told me I’d have to quit. I remember protesting, “but I LOVE tumbling around doing cartwheels and round-offs!” 

How cute are these $1 kits from Target?

 That’s when he suggested I take piano lessons instead, knowing it would be good physical therapy and less pressure on my joints. My first day of lessons I learned how to play Mary had a little lamb, and I was SO proud! I kept learning and through the years I ended up taking voice lessons, clarinet lessons, violin lessons, art, drama, scrapbooking, you name it. Anything creative, I loved and by the time I got to high school I was doing as many hobbies and extracurriculars as my school schedule could handle. 
I did All-State Choir, I did Orchestra, I sang in Dinner Theatre, I even did a sculpture at Miami Beach Art Basel. Looking back now, it’s such an A-ha moment because I would’ve never found my love for the Arts if it hadn’t been for Arthritis

Baby booties I made last year
for my dear friend’s first grandchild
 Nowadays, my swollen hands make it impossible to do any of those things. Being disabled, I find it’s easy to get caught up in feelings of inadequacy, not to mention boredom. I mean, just think of the word! DISABLED It feels like it just labels me as “can’t-contribute-to-society.” 
It’s horrible! To me, that’s not living, that’s not thriving, that’s not anything. It’s just existing and what kind of life is that?  That’s why I find it so therapeutic to have a hobby to feel like I have goals and accomplishments! I just set a goal (i.e. I want to learn how to hem pants) and then practice and read and learn how to do it! (i.e. pants now hemmed by me!)
 Since having to sign up for disability, I’ve done crafting, crocheting, sewing, painting, and cooking. Not all my projects have come out amazing (or edible), but a few have come out pretty good. 🙂 Lately, however, with my hands getting worse, even these hobbies have become truly impossible. The joints in my hands just can’t do the movements necessary to do these things and when I try, they end up hugely swollen and painful for a week. 
Left: Tomato, Middle: Basil, Right: Another type of Tomato

But I can’t let that bring me down! I’ll just find a new hobby! Something that I am ABLE to do. So I’m going to try gardening. My in-laws are brilliant chefs and seeing as we spend so much money on herbs and veggies, I thought I’d try to save some money and have fun by planting my own! Hopefully the Florida heatwave doesn’t kill my plants, but if it does, what’s important is that I’m having fun learning something new. 

I’m not going to let being DIS-Abled prevent me from enjoying life. I’ll just find something that I am ABLE to do. Here’s to trying new things! 

Take a Closer Look at Rheumatoid Arthritis with Vectra DA

This test is unbelievable! For so long, people with RA have had to somehow describe to their doctor everything that they’re feeling. This test has changed that for me. Now, my doctor can actually SEE how active my disease is and better understand what I’m going through. It has brought me so much confidence in our doctor-patient relationship as well as helped keep track of what’s working and what’s not. I’m so grateful for this test! It’s truly been a lifesaver!

Pain-o Dreams

It was a beautiful day. Bright and sunny, with not a cloud in sight as only it could be in Florida, my home state. I sat on the green, diamond patterned metal bench admiring the beauty of all that was around me when I felt a slight squeeze in my left hand, bringing me back down to planet Earth.
“Wanna go on Space Mountain?” asked my husband, his face glistening with a slight sweat but thrilled nonetheless. 
“Sure! Let’s go.” I replied, as I flashed him a grin. 
We strolled to the entrance of a very familiar indoor roller coaster without a worry in the world. As we walked through rows of metal line-forming bars, the ground sloped and the lights dimmed. Andres and I giggled as we quickly passed moving images of suns and stars and planets. As the ground continued to incline, my pace slowed. Steeper and steeper the floor angled, we joked about how much further we would have to go. Steeper and steeper- OK now- too steep. The pain came and so did the sweat as I huffed with exertion. He soon disappeared behind a corner as he sifted through the line casually. I grabbed onto the metal bars just in time. My knees, they weren’t working and the pain was too much to handle. I tried so hard to keep going, to reach the summit. I felt as though the weight of the world were crushing my now-swollen joints.
Suddenly, I wasn’t in the darkened tunnel of the line, I was in my bedroom- awake now- but something was off. Why hadn’t the pain gone away? Why were my knees and ankles still hurting as though I had just climbed a steep hill? Oh yeah… I remember now. This is just another symptom of a very familiar condition. More familiar than the entrance to my husband’s favorite ride at a popular theme park. These thoughts and images of what really happened on our Disney World vacation flooded my mind. I never climbed that steep hill. The exertion wasn’t my own, it was my husband’s as he pushed me in my wheelchair through the rows of metal bars. The only two things in common of this dream and my reality is the pain that’s always there and the happiness we shared that week. 
I smiled as I closed my eyes, realizing that even though the pain will always be there, so will the joy and the laughter Andres and I share be. And that is worth everything in the world to me. 
Hubby and I at our hotel, Disney’s Port Orleans Resort French Quarter


—Based on true events—



5. Acceptance

If this isn’t crippled, then I don’t know what is…
The scariest part is realizing I’ve already accepted it. I’m not angry. I’m not sad. I’m not even embarrassed anymore.
           This is me. This is my ‘normal.’

My family and friends have accepted it as well. I don’t get the, “So today’s a bad day, huh?” comments anymore when they see me with my boat (aka: walker). They know. Everyday is a bad day. The pain is at a constant ‘9’ and the swelling means my favorite skinny jeans aren’t even an option anymore. People rarely make fun of me anymore. I guess this “invisible illness” is beginning to be visible. The only thing I had left was the ability to drive and now that’s basically gone too. 


I’m done trying to hide my boat or use it only when the pain gets unbearable. Why? Because its constantly unbearable and I’m exhausted
Exhausted of pushing myself beyond the point of no return just to keep this secret. This secret that I can do more than I really can. That I don’t need you to help me. I can’t carry my dirty clothes to the laundry room. I can’t change my own sheets or cut my own meat or style my own hair. I can barely stand up in the shower for more than 5 minutes! I can’t keep all this a secret any longer and I need be honest

So here I am, being honest:

There’s a lot of things I can’t do on my own. 
Your 65 year old grandmother can probably do more things than me, but that’s OK. 
I love being me and even though I am practically crippled, there is one thing I can still depend on being able to do…
I can still laugh and I can still have fun, no matter what happens to me. Even if I never find a treatment that works and I never gain my independence, I know I will always be able to smile and enjoy my life. 
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