Most days are fairly normal living with autoimmune diseases. Ok, maybe not. Unless you consider multiple trips to the doctor, waking up with visible joint swelling (when your 35 mind you), constant fatigue, hoarseness, shortness of breath, headaches, depression and an all-over feeling of soreness — kinda like your skin has bruises all over it — if you call that normal, then yes. Living with autoimmune diseases is normal.
Today was just one of those battle-to-get-out-of-bed kind of days. The ones where I feel like I would have done my body good to turn off all the lights, shut off the alarm clock and climb underneath the covers for the next 12 hours. I feel beyond exhausted today, yet here I am. At work — headed to take photos of cute kids planting flowers in a butterfly garden. Then it’s off to school for an hour of lectures. And let’s not forget the four hours of commuting I will do today.
All of this would be tiring for even the healthiest person. Try managing it all when you have six autoimmune diseases working against your body. To top it off — I have two boys (14 and 11) who also keep me busy – as a newly divorced and now pretty much single mom.
Not sure how to overcome the exhaustion today. My wrists are visibly swollen this morning, making typing an extra chore. My fingers are also sore. I spent yesterday at the Rheumatologist’s office. She is concerned that my recent asthma diagnosis — well, there may be more to it.
The way she put it, people with MCTD often have problems with the right side of their heart. They also often end up with severe and sometimes fatal lung issues. She wants to rule these issues out. I should receive a phone call today or tomorrow about my next appointment — where they plan to run a myriad of tests including: an echocardiogram (basically a sonogram of my heart), a high-res ct scan of my lungs and several different blood tests to see my level of inflammation. Basically – if my immune system is attacking my heart or lungs, then my next step is a cardiologist or a lung specialist.
So — with that news — I continue to just keep going. My rheumy doc said that people who have autoimmune diseases should rest more. That my schedule doesn’t seem to allow me to fully heal, so I keep going in circles.
So, all you people out there who also suffer with autoimmune disorders, what do you do all day? Do you work? Do you go to school? Or do you all rest and sleep and take it easy while I’m out here kickin my own ass to survive? I guess doctor’s don’t realize that some of us — sick or not — have no choice but to work. That would be me. I have to feed my kiddos. I have to pay my car note. I have to pay rent. And most of all — I have to have money to pay for the doctor’s bills and weekly prescriptions at the pharmacy.
I have been to the doctor seven times in two months. And have had prescriptons to pick up at least six out of those seven times. And I’m still not better. It’s expensive being sick. And exhausting.
So, I keep telling myself “one day at a time.” I accomplished something already because I got out of bed this morning. I will smile as I take those kids’ photos this morning — not because I feel good, but because they do (which rubs off on me). And I will do my best to be strong for my kids, be the best student I can — and do my job well.
But this afternoon, when I can finally go home — I will climb into my cave and pretend that I have nothing better to do than hibernate.