I’m Walking to End Lupus. Join Me?
Imagine a day when doctors can say, “There is a cure for lupus.” Until that day though, there is work to be done. That’s why I’m taking action in the fight against lupus. Join me as I participate in Lupus Foundation of America’s Walk to End Lupus Now™ in Des Moines on AUGUST 29th, 2020 at 9 am to raise critical funds for the estimated 1.5 million people living with lupus in the United States.
Will you make a donation to help me reach my personal fundraising goal and support the Foundation's efforts to improve the quality of life for all people (including myself) affected by lupus? A generous contribution of $25 or $55 can make a definite impact. What’s more, if your employer offers a Matching Gift Program to employees, you may be able to double your contribution with just a little bit of paperwork. Trust me, it’s worth the effort! Every single dollar counts.
A little about me and why I am walking!
- I am walking to end lupus because My Lupus journey “officially” started back in October 2011. I was 21 years old living up in the Twin Cities. I had just recently graduated from Le Cordon Bleu Culinary School, working at my dream job as a pastry chef! I had it all together (or what I thought was together). I had an amazing boyfriend, that is now my husband, but truthfully this journey really started shortly after I turned 15!!
There are so many unknowns to this chronic disease that us “LUPIES” are left with a lot of unanswered questions.
For example: The day in the life of Samantha on a bad Lupus day. My alarm goes off at 6:00 am.. I open my eyes only for them to be super dry. My whole body hurts even though I have been resting for a good 8 hours. My neck is stiff, my head hurts, my joints are aching. I sit up in bed and extend my legs out to touch the floor. I feel like an 80 year old woman (even though my Grandmother just turned 80 and she is a freaking rock star!). I stand up and my feet hurt. All my body weight is on my feet, so it makes sense that they hurt. I have my happy dogs to push me through because they need to go outside and go potty. I hold the railing going down the stairs and take it one step at a time. Once my body loosens up a little I can walk normal.
Okay.. so some people at this point in the post will say “Oh, now I think she is exaggerating”. Sad part is I’m not at all. Some days it takes all my life and energy just to motivate my self to get out of bed. – back to my story-
I let the dogs out. The fresh air feels good on my face. As I’m standing there waiting on the dogs to do their business I get dizzy, so I have to squat down on the floor in the spot I’m in or I might black out. I sit down for a while and think to myself “why me”. Then I tell myself, “Stop the pitty party.” I let the dogs in and go upstairs to take a shower. As I get in the shower the hot water feels amazing on my joints. I wash my hair do my thang… I get out to go do my makeup / hair. I have to sit on my floor with a hand held mirror to do my makeup because again, I’m dizzy again and can’t hold my arms up to do my makeup. My arms feel like noodles.. heavy noodles.
A lot of people would ask – if you are feeling that crappy, why even go through the steps of putting on makeup and doing your hair.
Well, for me that makeup is what makes me feel better in the morning. It’s what make me look in the mirror and tell myself that I’m not sick. It tells me that I can concur this day. This day is MINE. My husband has watched me many times and asked the same questions. He always tells me I’m beautiful without my makeup and that even if I wore a garbage bag as a dress I would look pretty. Once I’m done doing my hair / makeup I get my clothes out. Get dressed and sit down on my bed to catch my breath and rest. This will usually last 5 – 10 minutes. I then get up – tell myself “you can do this” and go make myself some breakfast. I eat, take my meds, brush my teeth, and head to work.
Once I leave the comforts of my own home my fake smile goes on my face. People that look at me see Samantha, not a highly sick person that is screaming on the inside. Biting her tongue to get through the pain she is going through even when it’s just simply walking. As much as I love my job, the day drags on. I joke around with my awesome co-workers and it gets me through the day. I go home, cook dinner, take my meds again and go to bed. All I can hope for is tomorrow is a better day.
What frustrates me the most is that Doctors don’t know what causes Lupus or how to cure it. All they can do is manage my symptoms and get me to the next day. To read more about my story feel free to visit my blog https://skomylupusstory.wordpress.com/
It would mean the world to me if you are able to dontate or JOIN MY TEAM and walk with me to END Lupus!