Long Island, NY
Bio: (Who are you? What do you do? Tell me about yourself):
I am 37 years old. Married for 10 years to my college sweetheart. We have a daughter who is 4 years old and an 11 year old cat. I am a school psychologist and own a virtual skincare franchise. After working full time for most of my career, I found a job that offered me part time hours. It was a huge blessing, as with this illness I usually start to fatigue around 1pm. It offered me more time to be home and rest, and less time away from my child. In order to supplement my income I started my online business which allows me to work from anywhere and most importantly, lets me rest (or work with my feet up and a heating pad) when I need to. I live at the beach and enjoy the summertime. I like to read and cook and most of all travel.
Is there anything that helps you to rise above your condition? (Include anything that has worked for you. Examples: conventional medication, supplements, alternative treatments, diet, your faith, religion, healers, spirituality, exercise. Please also include any advice, tips or tricks you may have))
In order to best cope with my illness I have tried a variety of diets, medications and alternative treatments. What has helped me the most is staying consistent with eating a well-balanced diet, traditional medicine (currently on Cosentyx), acupuncture, physical therapy and yoga. I also make sure to rest, although its hard with a toddler, adequate rest has been the biggest help in managing my symptoms. I take frequent Epson salt baths and use tiger balm at night for when I am achy and in bed.
What does life look like at its best with your condition? (Describe a what a good day looks like)
I think the biggest change in my life when I am at my best is that my mood is great. When I have energy and feel good, I’m a better parent and a better person. I know how cranky I can be when I do not feel well and I hate that I take it out on the people I love. I try my best each day to be in the best mindset possible so that I channel positivity even if I do not quite feel that way.
What challenges have you faced in regards to your specific situation?
I think my biggest challenge so far with this illness is asking for help when I do not feel well and acknowledging that I am not able to do certain things because I am feeling terrible. It is hard saying no to events and special occasions because you’re too tired or your legs don’t work. Unfortunately, it has become a necessary part of my life.
“Not looking sick” has been a huge challenge since my appearance definitely deceives me. I actually was in the Emergency Room for a scan on a swollen leg when the resident rheumatologist asked why I was even there since I looked fine and healthy. Its hard to explain to people who have no idea about autoimmune diseases. Even people that are with me on a regular basis don’t know how bad it can get because most of the pain is internal, its only when my legs swell up that others actually notice. That’s hard in and of itself.
They say our life experiences shape who we are. How has your condition molded you to the person you are today? How has it inspired you and what strengths have you gained from your health journey?
There was a time before my daughter was born where I was in the best health I had been in since my diagnosis. I could do most of the things I missed and felt amazing. I find myself resentful of that time now that I am sick again and searching for ways to heal. I think that the disease has shown me that I can do more than I thought possible. There are times when I feel so bad that I do not think I can even get out of bed but somehow I manage. I always attempt to put my best foot forward and show the people around me that I can do anything. At my job, people are surprised to hear that I am fighting an illness or I do not feel well, because I am always trying to “not be sick” I think it forces me to be a happier brighter version of myself for those around me. Its only when I get home and sit down at night that my husband can see how hard the day was on me. I think that it’s important to take care of yourself, which is a hard lesson to learn as a parent. I has always tried my best to treat my illness as something I was working on, then once I had a child all of that was put on the back burner and it showed. I’ve learned that I have to try to find time to take care of myself and get to treatments because it’s the only way I’m going to be the best version of myself.
What is the one life motto or mantra that helps you to keep fighting/going on with your condition and why?
I may be sick but I am still healthy.
Just to explain the sick but healthy mantra, there are times when I get down on myself for having this illness; recently, a friend’s sister went into hospice for breast cancer. This girl I knew as a healthy, hearty athlete. When I thought of her, sick, never came to mind. Even when she was diagnosed, I didn’t think of her as having cancer because she was so strong physically. She recently passed away and while I was praying for her it occurred to me that yes, I am fighting a battle and I am sick but I am not dying. I am healthy and I can do better.
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Instagram : @dmcphly
Facebook : Danielle Macpherson