How Do You Do Everything With A Chronic Illness?
Updated: Mar 2, 2021
Hey Friends! Hope your enjoying the fall season coming along- cooler temps, leaves falling, arrays of oranges, burgundy and browns are spread everywhere. Fall and Winter have always been my favorite seasons since I was a child. I looked forward to the cooler temps, sweaters, boots and of course SNOW!
Fast forwarding to a thirty- two year old Momma, that works full time, has a home decor business on the side while managing a chronic illness. Having a chronic illness makes enjoying the colder seasons almost unbearable, instead of looking forward to it, I now dread it.
In the Spring of 2017 I woke up in the worst body ache of my life, I assumed it was nothing and took a ibuprofen and went on about my day. This body ache continued to last for several days to the point where getting up and out of the bed was impossible and extremely painful. I truthfully thought I had the flu or illness as I had cold symptoms as well. I went to the see my PCP, she tested me for the flu and it came back negative, she then said the same thing I thought, that I must just have a sinus cold and will feel better in a couple of days.
However, I never got better, if anything I started feeling worse- the pain was more intense and felt as if I had weight bearing on my shoulders, knees and elbows. My fingers were so stiff, and bending over was not an option, I started crying in the mornings as I would crawl on the floor to the bathroom in pain. I was constantly fatigued and had no energy to do a simple task. Not knowing was the worst part of it all, your mind can play tricks on you and spiral you into a world of darkness when you do not understand something. My positivity shifted along with my spiritual focus - I forced myself to smile through pain, act like everything was okay and push through and appear perfect. When I expressed to people my body changes many would say, "Perhaps you need to just stretch." or "Maybe you need to work out and don't consume bread." Everyone had different suggestions and I started to try all of them- when I thought I had figured it out and it went away, it returned with even more intense pain.
After several doctor appointments, and opinions from my PCP she sent me to see a Rheumatologist in the Fall of 2017. The doctor asks several questions, and squeezed every painful joint I had on my body, she then sent for 75 x ray scans and 13 biles of blood for a series of labs I couldn't even pronounce. I was shocked and even more in fear now, why would someone need so many labs ordered. Did I have cancer, was I dying? Sitting in that hospital that day shook me to the core with the unknown and uncertainty, I cried daily. She prescribed me steroids for assistance with the pain as she would review all the labs and x rays and get back to me. The steroids were amazing and worked miraculously but when I read the long term side effects I instantly shuddered.
January 2018 I had a tonsillectomy as my tonsils were so large they "kissed," it was while recovering from that brutal procedure I got the call finally from the Rheumatologist that she wanted to see me. I went in to see her a few days later, and she showed me my labs and what was called a rheumatoid factor - she explained my was too high by medical standards and that typically is a sign of Rheumatoid Arthritis or Sjorgen's Disease. She explained how rheumatoid proteins get into the blood stream and attack the body back and in my case it attacks the joints and healthy tissues in the body. She also explained all the other correlating labs she requested to confirm if it truly was RA, I sat confused as she spoke. She showed me diagrams of joints with RA, treatments, and what it essentially does over time and how it can be treated, but when the words fell out of her, "it is not curable." I looked up and thought she had slapped me.
I went home trying to wrap my mind around this Autoimmune Disease and thought, "Me?" Why would I have arthritis, like isn't this something elderly individuals deal with, I was only 28 at the time. The words, "it is not curable," continued to wrap around my thoughts because the fear of being in this pain for the rest of my life angered me and caused me to throw great accusations to things around me especially spiritually.
2019- I have managed this chronic illness now for almost two years, and the biggest thing I learned from those who have it, those who suffer in silence or too ashamed to say what they are dealing with is to speak up and speak out. Don't let what you are diagnosed with become you, I went into a dark depression with the illness and allowed it to consume my life but I couldn't keep lying there. I researched all kinds of organic ways to manage the pain, I eliminated several foods from my diet, but I occasionally indulge still- I keep my thoughts positive and refuse to stop doing tasks that are deemed, a NO NO for a individual with this disease. I found doctors telling me what I couldn't or shouldn't do and I refused to allow myself to just cripple up and give up.
I continued painting, I continued building and restoring furniture and items- it wasn't easy and perhaps took longer but with every completed project it humbles me. I joined several online support groups with those battling this disease and share my experiences and uplift the newly diagnosed. I refuse to let outsiders tell me what I am doing is wrong, or if I take this or if I walk more I will be cured. I know MY body and I know what it needs, and the next individual knows there's. The best advice I can give someone who doesn't understand the disease is to not suggest what they think is best when they have no clue. Its not about weight, height, gender or race- any one of any size, shape, sex, age can get it and they will know what their body needs and how to maintain.
So to answer a question I am asked by friends, family and many followers of my decor pages is, "How do you do everything you do?"
How do you make and build furniture or even have the time to paint decor signs?
How do you have the time to stay so busy and involved with your daughter's dance and taking random road trips with friends?
How do you have the energy to work full time, and battle this disease?
How do you have time to attend college and get you Master's?
How do you not just lay in bed all day and just rest, or how do you keep going through a flare and act like everything is okay?
You dislocated your wrist twice and sprained your ankle three times but yet your still dong the same things. how?
Because I refuse not to, I refuse to let a disease become of me, I refuse it to let it rob me of my happiness, I will smile and appear so fine and be crying and screaming inside. I will limp and walk slow but I will get it done. You have two ways you can look at a situation and I chose to look at it in a manner of you only live once and yes it's hard I will not lie. If I make it look easy that's the POINT, but again not everyone can manage the same. I do not give out brochures or opinions on how to do what I do, I will not say you just need to do this or that. No - because we all manage differently- I will however motivate you, cheer you one, cry with you, paint with you, relax with you, build with you, travel with you but its possible you just need to ask yourself, "How do I do everything I want to do..."
