To all the kids fighting childhood disease, you’re a HERO!
So, last week was my 23rd birthday and I got the greatest gift I could ask for.
I got Medicare.
I haven’t had health insurance since May and for someone like me, it can be really stressful. Not knowing when I’ll be able to get my Orencia Infusion again.
It is not easy. Especially when the treatments that give me back my ability to walk cost thousands upon thousands of dollars. Cha-ching! I don’t think so…!
Because I’ve been without Health Insurance, and therefore, my medication, I’ve felt my Arthritis slowly rearing its ugly head.
Everyday without these drugs is a little worst than the day before.
Luckily, I’ve still been able to do things I haven’t done in years, but even now, just two months without Orencia, I can’t sit in a chair for long periods of time anymore. I need to get up, move around, lay down, change positions because the stiffness in my spine and hips is so painful. I feel more of a difference in my extremities now, my wrists make it harder to write or even type on the computer. My toes are little swollen, painful sausages that make it difficult to sleep.
Even though I’m experiencing more of the regular ol’ Arthritis symptoms,
I’m still incredibly grateful that I will be able see my Rheumatologis and get my treatments again soon. Without this 23rd birthday gift of Medicare
(health insurance for old people and the Disabled) I wouldn’t be able to afford these treatments that keep me out of my wheelchair.
So, Andres and I went to Coconut Grove Park to get in some exercise and go walking- without my cane– for the first time! I cannot even tell you how amazing it was to see all that I could do. I haven’t been able to walk without some sort of aid, wheelchair, walker, or – most commonly- my cane in YEARS.
|Walking without my cane for the first time! We had to capture the glorious moment. 🙂
My cane was like an extension of my arm and I would use it to open and close doors, get things off the top shelf, and even balance it in a way where I could lean my buttocks against it and get some pressure off my knees. (Yes, I was pretty creative about figuring out different ways to use it. lol)
There were pros and cons to having my cane. On the one hand, I could walk a lot easier, without so much pain and go further. But on the other hand, I could only carry one thing at a time. Just feeding myself was a pain because not only was it extremely difficult to carry a heavy plate, but I couldn’t carry a plate of food and a glass of water at the same time as my right hand was being occupied by my cane. Same things goes for doing laundry, I only had my left hand to carry all these clothes so I’d have to make multiple trips and because walking was excruciating, by the time I made two trips to get the clothes to the washing machine, I’d be down for the count.
| Look at me working out my legs! Haha!
I can only tell you that the first week –at least– without my cane, I felt so outside myself. Like I could carry so many things at once. “So this is how normal people feel,” I thought to myself. Walking to and from places still feels so fast. It’s like when you say, “Pause the movie real quick. Let me get us some popcorn, I’ll be right back,” before, depending on many variables- like the weight of the bowl, the accessibility, my pain level, the swelling in my hands to open the package, etc- it would take me at least 10 minutes to come back. By then, I’ve forgotten what the movie is even about. Now when I say, “Pause it, let me get us some popcorn really quick,” it’s LITERALLY quick and I’m back in three minutes tops. Ha!
It’s unbelievable! Andres is always singing the theme song from Fast and the Furious, because that’s exactly how I feel now. “Too Fast…Too Furious.. Too Fast…Too Furious…”
|Andres and his dad, Joyce. Don’t they look like twins?
It still feels so surreal sometimes, as if I am not myself.
I can only give a million thanks to my friends and my family for helping me and supporting me through thick and thin.
I have no words to express my intense gratitude to all the wonderful people who dedicate their lives to help people they’ve never met, in order to give them a better quality of life. It’s a wonderful thing!
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 angry. We 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
every. single. day. 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.
*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.
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.
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.