Name: Michelle
Location: Hamilton, Ontario, Canada
Diagnosis: Rheumatoid Arthritis
Age at Diagnosis: 35
How are you currently treating your condition?
I am treating my condition with methotrexate, Humira,
and also narcotic painkillers when needed. I am a believer in of the
benefit of clean eating which helps my energy. The most important tool I
have besides my medications is meditation. I have been practicing
meditation and as an extension, mindfulness, for about 6-8 months. It
has completely changed my viewpoint of my disease and what it means in
my life. It helps me deal with pain and keeps my emotional state in
balance since I also suffer from depression and anxiety disorders.
What are the biggest challenges you have faced since your diagnosis?
The biggest challenges I have faced since diagnosis would have to be pain first. My RA onset was rapid and severe after my second pregnancy, affecting approx 20 joints in my body. The pain brought me to a very bad mental space. I hated life and I couldn't imagine living with the pain of this disease. I felt guilty and angry about being a mom because it required so much pain from me to do anything and I was so so angry at my husband for anything he did. I had to use a wheelchair to get around at times and couldn't change my baby's diaper. The mental health aspect of being diagnosed and living in pain was extremely difficult, and made my depression and anxiety spiral out of control for a while.
A second big challenge was navigating the health care system. In Canada with universal health care, I am lucky that my doctors visits, monthly bloodwork, and procedures are covered. Drugs are not. So I had to jump through hoops with my insurance company; trying 3-4 standard DMARDS as per their protocol before moving on to a biologic, even though my doctor and I both knew with my prognosis I would need a biologic to get this under control. But given their cost I needed the coverage because I wasn't able to return to working. When I finally got the Humira (thanks to the drug company who covered the cost for several months while my insurance caught up) it was life changing. Finding the right med balance for relief was also a challenge. The first year after diagnosis was a huge challenge in general. Some days I'm amazed I made it through. It seems like a dream now. I still have bad days and parts of each day, but I have tools now. My RA isn't wildly out of control anymore.
Energy is just a huge challenge in general. I struggle with it every day. Brain fog and lack of energy are 2 of my least favorite things in the world.
The biggest challenges I have faced since diagnosis would have to be pain first. My RA onset was rapid and severe after my second pregnancy, affecting approx 20 joints in my body. The pain brought me to a very bad mental space. I hated life and I couldn't imagine living with the pain of this disease. I felt guilty and angry about being a mom because it required so much pain from me to do anything and I was so so angry at my husband for anything he did. I had to use a wheelchair to get around at times and couldn't change my baby's diaper. The mental health aspect of being diagnosed and living in pain was extremely difficult, and made my depression and anxiety spiral out of control for a while.
A second big challenge was navigating the health care system. In Canada with universal health care, I am lucky that my doctors visits, monthly bloodwork, and procedures are covered. Drugs are not. So I had to jump through hoops with my insurance company; trying 3-4 standard DMARDS as per their protocol before moving on to a biologic, even though my doctor and I both knew with my prognosis I would need a biologic to get this under control. But given their cost I needed the coverage because I wasn't able to return to working. When I finally got the Humira (thanks to the drug company who covered the cost for several months while my insurance caught up) it was life changing. Finding the right med balance for relief was also a challenge. The first year after diagnosis was a huge challenge in general. Some days I'm amazed I made it through. It seems like a dream now. I still have bad days and parts of each day, but I have tools now. My RA isn't wildly out of control anymore.
Energy is just a huge challenge in general. I struggle with it every day. Brain fog and lack of energy are 2 of my least favorite things in the world.
What are your favorite tips and tricks for managing everyday tasks?
- Rest every day. Find times in your day to rest your
body and prioritize them. It gives me energy to do the things I need to
do.
- Hot Epsom salt baths are a lifesaver for stiffness and pain. Basically any time I need to do something physical or that requires energy and stamina (like shopping or a theme park) I take a bath first!
- Meditation can help you strengthen your mind and aid your ability to work through pain
- When others are around, like my mom or husband or brother, I let them do the physical tasks. I do as little as I can when I can and conserve my strength for when I need it
- Exercising every day helps so much, mentally and physically. I couldn't do it when I was in the midst of diagnosis and early disease but now that I can I make sure to move my body every day even it's just a walk for 15- 30 minutes.
How do you manage to keep facing forward every day?
- Hot Epsom salt baths are a lifesaver for stiffness and pain. Basically any time I need to do something physical or that requires energy and stamina (like shopping or a theme park) I take a bath first!
- Meditation can help you strengthen your mind and aid your ability to work through pain
- When others are around, like my mom or husband or brother, I let them do the physical tasks. I do as little as I can when I can and conserve my strength for when I need it
- Exercising every day helps so much, mentally and physically. I couldn't do it when I was in the midst of diagnosis and early disease but now that I can I make sure to move my body every day even it's just a walk for 15- 30 minutes.
How do you manage to keep facing forward every day?
I manage to keep facing forward everyday because I know that nothing lasts forever. As odd as that sounds, I know each flare will pass, each challenge will be met. I know the clouds will pass and that the blue sky is always there underneath. So I just try to hold on for the ride and keep facing forward.
I have an amazing family. A husband who is beyond supportive in every way and 2 daughters who are sensitive to my needs and fill me with joy. They keep me facing forward. I also have an excellent support network in my parents, brother, and a few close friends. They help me as often as they can and I love them for it.
If you could go back to diagnosis day and tell your past self one thing, what would it be?
If I could go back to diagnosis day I would tell
myself to not get swallowed up in despair. To believe in my strength,
and believe that I can handle this, that I will find meaning in it and
own it and be better for it somehow. Because I did all of those things
and am proud of who I've become on the other side.
Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.
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