This is my first of a monthly series of guest posters who will share their diseases and conditions and how they affect their lives. I met Alecia when we participated in a Mama Kat’s Writer’s Workshop when we discovered we had a lot in common. I will let Alecia tell you all about it.
The sun rises to greet a new day. My son, who is 5, comes in to wake me up for the day and is already asking if we can “go somewhere fun”. I rise up out of the bed; make my way downstairs, and then I do an assessment of my health. Does anything hurt? Am I fatigued still? I try to anticipate what might hurt as I go through the day and whether I can answer “yes” or “no” to my son’s request. This is my life as a Mom with Rheumatoid Arthritis.
I never expected the diagnosis of Rheumatoid Arthritis (RA) when I went to the doctor for the first time with pain in my hands, wrists, and knees. At first, I was told it was carpal tunnel. However, the pain would move around to other joints: shoulders, elbows, feet, and hips. My diagnosis came in January of 2013. I had already been experiencing pain on a daily basis and fatigue so the diagnosis just confirmed the reason. I couldn’t imagine at that time, how my job as a Mom would change due to my RA.
Rheumatoid Arthritis is an auto-immune disease where your body attacks your joints. It is different than osteoarthritis, which is due to age and wear and tear on the joints. There is no cure for Rheumatoid Arthritis and the progression of the disease can vary from person to person. Often times, looking at a person who has RA you wouldn’t be able to tell they are sick. Along with severe pain in the joints, which can move around from joint to joint, RA causes fatigue and oftentimes, the side effects of medicines can be harsh as well.
My daughter, who is 7, has said a lot that she “hates RA”. When I ask her why she hates RA, her response is always because it has kept me from taking them places and having fun with them. It is very hard to not be able to chaperone a particular field trip because of the amount of walking involved. To not be able to participate in Field Day like other parents because you are having a flare and need to rest. All of these things are hard for my children to understand. The words “no fair” and “I miss the old you”, tend to be said frequently to me by my children.
It has changed how I am as a Mother in that I have to limit what I do and what I can participate in. I may have to bail last minute on plans because I can’t keep my eyes open due to fatigue. It breaks my heart to not be able to do and go like I could before and to feel like I’m letting my children down. I should be holding my son’s hand when we walk through a parking lot to keep him safe. Instead, he holds my hand and arm so that he can “help” me get through the parking lot to the store when I’m having a rough day.
On a positive though, on the days when I am able, I do as much as I can to make memories and have fun with my children without overdoing it. I don’t want their entire childhood to be focused on their Mom’s RA. As they get older, I’m hoping they will understand a bit more but it is hard at this age to see your Mom hurting and battling this disease.
Life often puts us on detours that we didn’t expect; I’m learning how to enjoy the scenery on the latest detour in my life. I am Alecia and I’m a Mom to two children, 7 and 5, who loves to cook, create, learn, and see the beauty in life. I share my thoughts as well as my favorite recipes and crafts at Detours in Life – Enjoying the Scenery Along the Way.