Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!
Location: Miami, Florida
Diagnosis: RA and COPD
Age at Diagnosis: RA at 17, COPD from birth
How are you currently treating your condition?
I have always had a challenging medical life. From the time of my birth, doctors have been writing prescriptions, agonizing over text results and placing limitations on my life. My lung condition is unique and is currently being treated as Emphysema. Thankfully, I live a very normal life style and do not need oxygen. I was told I would need a lung transplant by the time I was 24, but here I am at 33 and still no transplant has been needed! I can’t attribute any of this to my own lifestyle choices… I am not a great patient. But I have faith that God is the only one that has sustained me all these years.
The tricky part has been that RA and Lung Disease are not a great combo. RA meds suppress my immune system and then I am more prone to catching viruses which immediately affect my lungs. I have tried ALL sorts of RA treatments over the last 15 years (Prosorba [which isn’t even FDA approved anymore], Remicade, Kineret, Enbrel) and they have either not been effective, I’m allergic, or I get sick too often while on it. For the FIRST TIME in 15 years I have found the biologic that is working so so so great that I actually FORGET that I have RA (some days). I’ve been on Rituxan for 2 years now and I’ve never felt better! As I said before, I’m a horrible patient. I’m a little rebellious, which I attribute to being sick my whole life and being so over it that I can’t even. I just choose not to take my medication, even though I know it’ll backfire. I know it’s not smart and I have an internal battle about it, but c’est la vie. This is why Rituxan is working for me… because I only have to take it every SIX months and since it’s an infusion with an appointment, I don’t miss it. I’m finally controlled! I also take Methotrexate (not as strictly as I’m supposed to).
What are the biggest challenges you have faced since your diagnosis?
The first 3 years after my diagnosis were the very worst. I went from being a perfectly normal teenager to feeling like a 90 year old. I couldn’t stand up after sitting on the toilet. I couldn’t stand up onto a curb. I couldn’t wash my hair. I had dreams of moving to NYC to sing, and all of that was stripped away. I knew there was no way I could tackle a big city like that all on my own with this disease. My whole world became limited.
I became destructively angry, so on top of having physical damage, I was self imposing emotional damage as well. It was a dark time… my very own “dark ages”.
I have endured many other challenges and physical limitations since then as well. Daily living is a challenge! Motherhood is a challenge! When my kids were babies, they were walking everywhere as soon as they could… Mama could not carry them around when they were 25 pounds! I don’t get on the floor to play with my kids. I don’t kneel down to get to their level to talk to them. I don’t ride bikes with them or kick around a soccer ball. I don’t go to the zoo. I can’t attend a fun field trip because I know it’ll be an entire day walking and that I’ll pay for it. My children know that I have limitations and it breaks my heart.
What are your favorite tips and tricks for managing everyday tasks?
As moms, wives, and women we have a lot of things that need to get done. Laundry, dishes, cleaning, homework, work. First of all, I have taught my kids to help me. My kids know I am sick… and they know that they have to help me. We are a family and family helps because family loves. I have empowered my kids to do housework from the time they were itty bitty. Now, at 6 & 7, they empty dishwashers, do laundry, pick up around the house, carry in groceries (even the heavy bags), and help dad with home improvement projects. By doing this, I’m not only helping myself, but I’m also training them up to be responsible, helpful and self-sufficient men. Our world needs more of those.
Secondly, I’m honest. I have REAL limitations. I’m not being a big baby. I can’t “suck it up.” I’m not exaggerating. I’m not being a drama queen. When I need help or I’m just done for the day, I say so. I am not going to try to be a martyr and push through the pain when I know it’ll only make things worse tomorrow.
Considering we all have a certain amount of “spoons” available for each day, it’s important for me to prioritize what I really need to spend my spoons on. I weigh all the things on my “to-do list” and determine which are worth spending spoons over. I also try to give myself a day to just chill, kick back, binge on Netflix, and talk on the phone for a few hours. My body needs that, but so does my mind and soul.
How do you manage to keep facing forward every day?
I have been blessed to have the most amazing and supportive husband. He has known me since I was a teenager, so he saw me go through my diagnosis and dark ages. He has seen me at my worst and my best. He understands my limitations and never pushes me or guilts me. He takes such good care of me.
Most importantly my relationship with God keeps me facing forward. I have been angry with Him. I have done the whole “WHY ME, GOD?!” thing. But He keeps teaching me every day that He has great plans for me. That it is because of Him that I am able to do anything at all. He has shown me that He constantly chooses the weak and broken to do His greatest work. He is made known by my weakness. I can only give Him credit for all the good in my life.
If you could go back to diagnosis day and tell your past self one thing, what would it be?
Your life isn’t going to turn out the way you dreamed it would. This will change everything. BUT there is something better waiting. Don’t lose hope.
Do you have a blog you would like to share?
I don’t blog anymore, but when I did, I wrote about my RA journey back in 2012… you can find it here.
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