It's never too late. Don't focus on what was taken away. Find something to replace it, and acknowledge the blessing you have.
Never did I think I'd be grieving my health at twenty four. You see chronic illness is a never ending cycle of good and bad days. That's the thing though, its chronic. No matter how good I feel today, tomorrow could be a whole different battle. There's days when my pain is too high to get out of bed, or I've passed out three times and it's not safe for me to be left alone. For a while this really got me down in the dumps.To be told I was crazy, it was" all in my head." To not be taken seriously. It gave me a poor outlook on the healthcare system that I have provided care for. I've had my time to grieve and that time has shown me the silver lining full of blessings through chronic illness.
Be Intentional
A few weeks back I packed away clothing that no longer fit (thanks to you Prednisone.) Suddenly I felt a wave of grief. How silly to be upset over something as trivial as clothes. These clothes hold memories. Memories of working EMS, and being there in someone moment of need. Memories of theatre productions and shenanigans til the wee hours. Memories of nights out with friends, even if that night out was on someone else's couch. I found this moment of breakdown to be a blessing in disguise. You see being ill has taught me to not take time for granted. I used to have an unlimited amount of time and energy to do things. Now that isn't the case. My time has become a commodity that I don't always get use the way I'd like to. My best usage of this time now is to cherish every good moment I have to spend with family and friends to make new memories to hold.
Bridge the Gap
There is such a gap between health care workers and patients. There isn't any middle ground. In this adventure I play the patient. A complex patient. This means I need I need some explanation on my procedures and diagnosis like any other patients. But I'm also a medical professional. I know a wee bit more than I should regarding health and treatment.This allows me a special walk. I feel like there is a lack of compassion and exploration at times for chronic illness.
In EMS we are taught to treat the acute and the nonce I became a patient and the script flipped I realized how often patients are dismissed. Is this due to shitty doctors? Perhaps. I believe more times than not it's a lack of educations. I was told time after time it "was my anxiety and it was all in my head.". I have never had anxiety. I was dismissed. I was told I couldn't have any of my diagnosis because I" was heavy. It's because you're not taking care of your weight problem." Dismissed. I was told in one week that I had " Chrons,Colitis, cancer. We just can't figure it out. Go see psych." Dismissed. I was told I couldn't actually experience certain symptoms because they were rare... Yup. You guessed it. Dismissed.
I fought to where I am now. I didn't give up. I had to be my own advocate . I almost gave up. Seeing this in myself as a health care professional is heart breaking. We all took oaths to do no harm. Here I was five years in a row with no resolve. I was never emergent enough for anyone. I was treated as a nut job in the end. It took 14 doctors in countless specialties to figure out what in the hell was going on with me. After struggling for my diagnosis I take the extra time to educate and bridge the gap between healthcare and patient in any setting I can.
Be Still
When I say "be still" it's not a metaphor. I literally mean be still. Don't move.I have times I can barely function, nausea, syncope, pain, you name it. So I'm still. You're probably asking yourself how being still is a blessing. Being still has given me time to rekindle relationships, even if it's a simple message or phone call. In the moments I need to be still I have learned self care. I have realized it's okay to take time to rest or soak in a bath. It has given me the time to do what I love, write. Being still has given me the opportunity to think and just be present.
Fining my Tribe
Not everyone has a great support system. Having a non supportive tribe makes this already difficult road even harder. I am not only blessed to have phenomenal family but also the most supportive friends I could find. Don't let me lie to you. I have had some friends bolt toward the highest hill. I get it. Chronic illness is hard to handle. Trust me I live it. Do I hold it against them? Not at all. Being ill has shown me the ones who are really here for me though, through the thick and thin. It has taught me that the ones who get closer the tougher it goes are your forever tribe. To those of you reading this who were my for now friend, I SO appreciate you. You were there in a season of my life where you helped me flourish and experience life. THANK YOU from the bottom of my heart for pouring into me when times get rough. Thank you for not leaving me. Thank you for showing me I can do this. Thank you for living this with me. You are all blessings. To those of you who I don't have photos of below but have been here through it all ( you know who you are) don't think I have discounted you, I simply haven't had a photo op with you since ill. You still mean the world to me .
Being Fierce
It's no secret I'm overweight. I have been since I was a kiddo. Being on a delicious dose of steroids more often than not, mixed with my regularly scheduled cocktails, has increased that wretched number. From the gain my confidence plummeted. I have always made jokes at myself so when comments were made they didn't hurt. Hence Fat Patricia coming alive. ( For those of you unaware shes my bitchy, usually drunk, alter ego.) Then came the scars from procedures. The tubes sticking out of various body parts connected to various medications. This wasn't so easy to hide. I became vulnerable. Something had to change . Being open and bridging the gap between the chronically ill and the world made me realize . I AM FIERCE. My confidence that once was dwindled down to next to nothing now soared. I felt strong. These tubs indicate my warrior fight. My scars and marks are tiger stripes from not giving up. Its all proof that I am a
Chronic Badass.
