There is something so odd about going to my Rheumatologist, Dr. Weitz’s office and seeing all these people, patients, like me, at different stages in their journey with Arthritis.
Last Thursday, as I was walking out of Dr. Weitz’s office I noticed that in the waiting room was this woman that I could easily identify as a New Patient. It was so odd to me, seeing her there. I could tell she had Arthritis and something about her made me want to reach out and touch her shoulder and tell her:
“Everything’s going to be okay. I’m here for you.”
And to think, maybe she’s experiencing these unusual symptoms for the first time. Maybe she doesn’t even know what’s wrong with her and here she is, sitting in a waiting room with all these “sick people” in wheelchairs and with walkers and canes. How terrifying we must all look to her. How scared the woman must be. I know I was.
It felt as if I was having a flashback of when I was the New Patient, anxiously sitting in the waiting room -scared to death of what the future might hold. I had so many unanswered questions. Will I be able to walk again? Is this doctor going to help me? How bad is my RA?
I had had a rheumatologist before, the same one who diagnosed me when I was 5 years old in 1996. But, to be honest, we weren’t getting along. I felt like he wasn’t treating me or at least trying to treat my disease. We disagreed a lot on how well my Arthritis could be controlled. He told me multiple times that I should just accept the fact that I was disabled now. But I wanted to fight back, try any and every treatment available.
Well, finally, one day, my husband and this rheumatologist got into an argument about my prognosis. We told him we weren’t ready to just “accept it and move on.” I was too young for that! I was 19 and still had many more fighting years left in me. If the treatments didn’t work, fine. But I wasn’t going to give up WITHOUT EVEN TRYING!
|Me, at my first-ever infusion.
So, that’s how I ended up in Dr. Weitz’ waiting room -5 years earlier- sitting scared and confused just like the woman. If I could say anything to her and to other new patients, I’d say:
We’re all just like you, waiting, hoping, praying, fighting. We’re here for the same reason. To fight this disease and aim for success in better health. We’re here because we’re fighters.
So, I guess it’s time to be honest about why I haven’t been writing as much.
Don’t get me wrong, I am writing. Journaling on my own, like I always have.
I’ve also been writing articles for different websites as well as essays for school.
But that’s not why I haven’t been writing here, sharing with you all what’s going on with my life like I normally do. I pride myself in being transparent with my description of life with Arthritis.
I don’t hide the nitty-gritty. The jaw-clenching physical pain, as well as the psychic pain I experience on a daily basis.
It’s much easier to do this in writing than it is in person. Overwhelmed by my desire to not let my symptoms overshadow my conversations with loved ones. I smile though my mind is on my knees because I’m genuinely happy to see them. I choose to be in the moment. The result is often me stumbling later from exceeding my boundaries in the hope to “help” wash the dishes. Very few recognize this meager out pour of sacrificial love. It’s all I have to give.
…I think I’ve been delaying exposing the truth by going underground…
I’m struggling with getting my treatments.
They are never on time and the costs are sky-rocketing.
I don’t know if I can keep going this way.
My studies are suffering due to the obscene amount of calls I make daily to the insurance company, the pharmacy, the doctor, various foundations…
Unfortunately I’m not becoming an expert, I’m simply getting sidelined by the lack of valuable information available.
Every truth is contradicted by another agent, another supervisor, another “expert”.
My pocketbook is empty, both by the amount of “minutes” I spend on these calls, as well as the costs of treatment.
It all came to a head yesterday when I received a payment notice of almost $500 for a medication I was previously told was $70. I was ordered to pay within 10 days, as if that were possible. The process of filing an appeal is 60 days.
This is just one on top of the other medical bills that have come through the mail. The amounts owed quickly climbing to $2,000.
If I could just get this, my most important treatment administered on time and at a reasonable price, I’d be relieved. This is the medication that has given me back my ability to walk. This is the medication that I’ve spent five years searching for. Five other treatments failed before trying this one.
This is the only one that works.
For a long time I didn’t see or even speak to my Mother.
Just knowing I was going to see her would bring on the worst feelings in the world.
It was like a combination of anxiety and resentment building up in the pit of my stomach.
My mom had me young. She was 17 and in her first semester of college when she got pregnant with me. Then two days after her 18th birthday, she married my dad, dropped out of college and moved to New York to have me.
So, a few years ago when she decided to go back to college and fulfill her dream of becoming an Accountant, I was supportive. I thought it was a great idea and very brave.
I wasn’t at all jealous of the fact that I- 21 years old at the time- couldn’t go to college because I was too sick from my Rheuamtoid Arthritis. I had always said how I felt my life was “on hold”, my youth “wasting away” while I fought this seemingly “old person’s disease.”
So when she called me one day hysterically crying, I wasn’t just surprised, I was annoyed.
She explained to me how her college had suspended her Financial Aid due to the F grade she received in the class she never finished back in Fall of 1990.
(…The same semester she dropped out upon realizing she was pregnant with me…)
She sobbed, “Now I have to wait one semester, before returning to college because of a mistake I made 21 years ago!”
Slighted, but still with a patient attitude, I explained that even though this was disappointing news that it would be ok and she could return to college NEXT semester. No big deal. She’d only have to wait 5 more months before moving on with accomplishing her dream. I even told her to think of it as a break! Time to prepare and relax before jumping into something new and challenging.
Of course, this meant nothing to her and no matter how hard I tried to reason with her on how they had only suspended her Financial Aid for ONE semester as punishment, she continued to cry and complain.
So… I thought I’d try to relate with her. Make her feel like she wasn’t alone.
I explained my own situation with RA and how disappointed I was that all my friends were graduating with Masters while I was stuck at home, sick, unable to accomplish my own dream.
I explained how even though I did get down about it sometimes, I had hope that one day (..who knows when..) I’d hopefully feel better enough to go back to college and get my degree.
I even told her, “This is only temporary. At least you know that in 5 months, you WILL get your Financial Aid and you’ll be able to go back to school.”
I don’t really remember what happened next. All I remember is that the whole conversation lasted almost 2 hours and by the end I was furious.
I told her she was a brat and that I never wanted to speak to her again before hanging up. And I didn’t speak to her again. Until now.
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.