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Reconciliation Part 1

I’ve talked about my rocky relationship with my parents before. Especially when it concerns my Arthritis

I’ve written about the day I got my first cane and my dad’s harsh judgement. 
It’s been really hard, not having my parents’ support or understanding. 
It never made me angry with them. More sad, that they couldn’t be there for me. 
Well, last week my mom had major surgery. A hysterectomy to be exact. 
I knew before what a hysterectomy was, so when my mom called me to tell me she’d be going in for surgery in two days, I knew of the difficult recovery she’d have to face. 
So when she got released from the hospital after a couple days, I drove over to my parents’ house, prepared to take care of her. 
I know she wasn’t expecting it, but to be honest, I knew I’d do it even before she asked. 
Not because it was my job as her daughter– she hadn’t taken care of me when I needed it most. 
Not because she deserved it- because she defintely didn’t.
Not even because I wanted revenge or to make her feel guilty– show her what she could’ve, but didn’t do for me. 
I did it because it’s the right thing to do and I always knew if the roles were reversed- which they now were– I would take care of someone who needed help. 

I’m not a stranger to needing help. Not one bit.
I’m a disabled, sick girl with Rheumatoid Arthritis
There’s so many things I can’t do on my own. There’s so many things I need help with day in and day out. 
So when someone else needs help, when someone is sick. I know. I know the feeling
I know what it feels to be in pain. To not be able to do things you can normally do.
That’s why I did what I did. That’s why I chose to take care of my mother when she was in pain, unable to bend over, unable to take a shower or wash her hair, unable to cook or clean or drive to the pharmacy. 
I did it because I know how it feels and because I know how it feels, I knew I could help her.

Celebrating the victories BIG and small

What do you like to do to celebrate yourself and your victories? 

I think it’s so important to celebrate the victories B I G and small
It makes me feel good about myself. Good about my place in this world. 
It makes me feel like I’ve conquered something I couldn’t do before. 

It’s easy to get caught up in the disappointments of having a Chronic Illness. Especially when you have a family and responsibilities. On days where I’m feeling less pain than normal, I find myself catching up on chores I wasn’t able to do the day before. 
I often spend the “good days” folding laundry, changing the bedding, cleaning the bathroom, grocery shopping, etc. 

“Bad days” aren’t spend relaxing in bed and watching TV as most people would think. They’re spent covered in Ice Packs from head to toe, laying as still as possible as not to aggrevate the joints that are frozen in place. Attempting to sleep, exhausted from the agony my body is experiencing, but unable to get a wink in. Holding my pee till I can work up the nerve to hobble to the bathroom. Making that trip worth the physical exertion by combining my need to empty my bladder, brush my teeth and my hair, put in contacts, shower,  and change into a new set of pjs (ones I can put on by myself) into one trip down the hall to the bathroom. 

Spectacular sunrise over Miami Beach. Photo © William Wetmore: facebook.com/NjordPhoto







But as a wise person once told me, sometimes it’s important to “just sit back and enjoy the good days. Instead of spending my good day doing chores, even if it’s for just a moment, take the time to celebrate it. 
I like to reward myself and my ability to keep moving forward with a chocolate treat or a small gift like a book I’ve been wanting. Sometimes just an experience, an experience not clouded by pain, like laying in the grass, watching the sunset, thinking to myself, “I did it.” 

There’s something so satisfying about dressing up on a day that I feel good. Most days I don’t have a choice but to dress in pajamas. On “Ok” days I take it up a notch by wearing an actual bra and a tee. So when I’m feeling good it’s important to me that I style my hair, put on make-up, and a nice outfit…even if it does take me three hours… 😉 

It’s easy to get caught up in everyday life, especially when you feel like you’re always playing catch up. But for just a minute, an hour, a day, taking the time to paint my nails, watch the Sunset, or take a long, relaxing shower makes me feel not just like the girl with Arthritis, it makes me feel like a woman, a human being- just like everyone else- again. 


And for the “great days,” there’s always skydiving! 😀

Woohoo!! I’m feeling better!

I’m so excited to finally share this news with all of you! At the beginning of this month, I got the results of my Vectra DA. If you look at the graph, you can clearly see that in January of 2013-when I was on Actemra-my score was at 51 (High), six months later it went down to a 34 (Moderate), and almost a year after that-while I’ve been on Orencia-it went down to a 30! My RA is now showing a score of 30, which is bordering the Low and Moderate scale disease activity and the lowest it’s EVER been! Woohoo!!! 😀
Click the Link to learn more about Vectra DA, and exactly how it’s helping thousands of RAers like me!

I’d love to go into scientific detail on exactly how this cool test works on just one vial of blood, but I think what’s more important is how it’s affected me and changed my life
Am I right? So here’s the crazy story… 
In 2009, I was seeing the same Rheumatologist I had been seeing nearly my whole life. I kept telling him that my joints were really bothering me and that it was interfering with my life. It got to the point that I even had to quit school for a short time because I couldn’t walk from one class to another. After a couple months of continued deterioration due to the pain, stiffness, swelling, fatigue, etc my husband, Andres, asked him if he would put me on one of those Biologics you see on TV (Enbrel). He said, “No,” because he felt [my] joints and couldn’t detect substantial swelling.” 
…Mind you, all he did was touch them with his hands…
He told me straight to my face that he believed all my symptoms were “not due to the Arthritis” and that it was “in my head.” He then continued to tell Andres and I that there was nothing that we could do and I would never be able to do things normal people could do or walk without pain again. I was in tears and Andres was just plain angryWe never saw him again after that. 
A week later we found my this amazing Rheumatologist and he told me he believed he could get my Arthritis under control and that same day he started me on Enbrel. It worked great for about a year, but my lovely antibodies decided it was time to to say bye-bye and it stopped working. The appointment right before our wedding, we all decided that when Andres and I came back from Hawaii, I’d be switched to Remicade. I had very high hopes, knowing many of my rheumy friends responded well to this drug, but unfortunately, it didn’t work for a second. 

Then, one day we were in the Infusion Room when Andres saw a pamphlet for this iPhone app called MyRA. We both thought it was kind of genius that someone had thought about making an app to track your symptoms. I had tried tracking my symptoms in the past using various little booklets and journals but really couldn’t get into the swing of it. It was just so hard to know where to start! Plus, I would feel so different from one day to the next that in order to get any reliable data I would have to write a novel of information 
everysingleday.  Not to mention, writing about all the pain, stiffness, swelling, nausea, etc I was feeling each and every day felt more like a chore instead of something I actually looked forward to. It got old quick. So when I downloaded this app and saw how easy it was to use and fun even with the little MyRA cartoon, my hubby, intrigued, looked up the company. He saw that the company, Crescendo Bioscience, had just recently developed this advanced blood test for people with Rheumatoid Arthritis. After reading about the test we immediately talked to my Rheumatologist about it, who thought it was a marvelous idea, and two weeks later we got the score showing High Disease Activity. The results felt so accurate to me, that I was in shock! 

I’m not recommending everyone with RA take this blood test just because it’s the latest technology and the first multi-biomarker blood test for RA. I’m recommending everyone take it because it truly helped me and changed my life. Rheumatoid Arthritis is largely an invisible illness, until its not. You can’t detect that damage is happening until it’s already happened. For me, because I haven’t experienced lots of joint damage, my doctor didn’t believe my symptoms were real! Getting the Vectra DA test done not only saved me a lot of time because I can see if the treatments are working or not, but it also gave me confidence in myself and in my doctor that we are on a path to better health

So now that I’m feeling way better and I have finally found a treatment that has been proven to work, I’m on to the adventures I’ve been planning for years now!
…..Maybe I should rename this blog to: The Adventures of Arthritis Girl.
Whaddaya think?? 

*This testimony is based on my personal experience. I am not a medical professional, but urge anyone interested in taking Vectra DA to seek the advice of their doctor.

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. 
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