Facing Forward is a series that shares the lives of people living with arthritis and other invisible 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: Northern Minnesota
Age at Diagnosis/Diagnoses: 25 (5 years ago)
How are you currently treating your condition?
I have been getting monthly Remicade infusions for over 2 years (see picture) and have had good to very good results. I am also taking a small dose of Prednisone daily. I stopped taking Methotrexate in June and have also tried Enbrel, Plaquenil, and Sulfasalazine (triple combination therapy).
What are the biggest challenges you have faced since your diagnosis?
When I was first diagnosed, I had a pretty good idea of what my upcoming challenges would be, including limiting and restricting my activities, balancing my demanding work and family responsibilities, and finding a treatment plan that works for me. What I didn’t expect were the challenges I would face with my insurance company (dictating what I can take and when), paying for and receiving medications, overcoming my fear of needles (self-injections and infusions), and the affect the medications/disease would have on my appearance. My self-esteem has taken a detrimental blow. It is a downward spiral of weight gain, moon face, swollen/deformed joints, etc. I wish I could start a hard-core exercise regimen and get back to being fit, but the disease won’t let me. I was taking 60 mg prednisone when I was married – I look at my wedding photos and don’t even recognize myself. I was just joking with a coworker that I hate shopping for jeans… not because it is frustrating to find jeans that fit my hips, butt, etc… but frustrating to find jeans that fit my (swollen) knees!
What are your favorite tips and tricks for managing everyday tasks?
OXO Good Grips kitchen utensils are a life saver. I use heating pads and a lot of pillows to help me sleep. I’ve become an expert at manipulating the pillows (under the elbow, between the knees, under the feet, etc.) to take a little pressure off. I also only buy products that I know I can open/close easily (shampoo, toothpaste, dish soap, etc.).
How do you manage to keep facing forward every day?
First and foremost: my daughter (age 3). This little bundle of joy and energy keeps me going! Humor gets me through when sometimes other things don’t. And, finally, music… this has been a staple in my life for any type of hard time. Music comforts me. It motivates me and gives me hope. If I’m grocery shopping and finding it difficult to keep standing and walking, I think of a good song to get me through and just play it through my head to take my mind off the pain.
If you could go back to diagnosis day and tell your past self one thing, what would it be?
I’m proud of you! And, it is OK to let some things slip. I am still struggling with this today. I have a master’s degree. I work very hard at my job. I always have a clean house. I am a good wife and mother. I look for new recipes and cook dinner most nights. I “Pinterest” activities and projects for my 3-year-old to keep busy. I keep my daughter fed, clean, clothed, and (mostly) happy (of course, there are occasional toddler tantrums that transpire!). I pay the bills, balance checkbooks, and take care of all financials. And… because of this… I’m exhausted. All. The. Time. I very rarely relax or have time for myself. Even during extreme flares, I am still trying to do the dishes, clean the floors, and wash the laundry. I have a problem. I need to let go and ACCEPT the fact that I need to slow down and take care of myself. I also need to start asking for help. Because I keep doing all of these things every day, people assume that I am doing OK and that I don’t need help. I have an entire support system ready and able to jump in and help… I just need to learn to let them.
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