Finding the Light on my Darkest of Days…
I am two days post Remicade infusion. Two days from my 32nd birthday. And yet I am having the worst week ever.
Having an autoimmune disease is more than having chronic pain, continuous hospital visits, and fatigue are only a portion of having the disease. I’ve said it before and I will say it again, mental health is a HUGE part of the disease. Post Traumatic Stress Disorder, Anxiety, Depression all brought on my facing death, financial ruin and dissolution of relationships and/or careers. In my time battling Inflammatory Bowel Disease I have gained other autoimmune diseases, loss relationships & friendships, lost my home, my career buried and a rollercoaster of financial stability. The word “cure” keeps me in constant battle with my insurance company as to who pays for my medications and care. It’s just…exhausting.
Today…today is just one of those flipping days. The treatment has left me jittery and exhausted. Unexpected costs have come up again because…well, apparently I’m cured from IBD and any other disease that has left me disabled (according to my doctors and social security). The pain from my car accident has subsided, but it left a lasting affect on my IBD with the weeks I went sleepless in pain and anxiety of driving my car with a broken tail light. I miss my kid and every time he tells me he “misses me so much” my heart literally breaks. I’ve gained…well, let’s just say I’ve gained enough weight to grow hips, a butt and enough boobs to finally look like I’ve gone through puberty. But I can’t fit into my jeans. But who can afford new jeans when we have new soccer & baseball gear to buy, sports registration, afterschool coding classes to pay for, new school clothes, new brakes & tires on the Batmobile, and a new bottle of VSL3? Did I mention I am turning 32 on Friday?
At 22 years old, things looked fantastic. I landed an excellent internship at HBO, my second internship in my entire college career. I just knew that at 32 I would be anywhere but where I am. Someone who has had their Jpouch a lot longer than I’ve had mine, told me to give it some time. This week, I can’t really find the silver lining in things. The smell of latex gloves and alcohol wipes still makes me break out into a sweat. Catching my mom watching me like a hawk and worrying about me is just giving me a pressure that I can’t handle right now. I’m tired of being sick and tired. Annoyed with being a burden. Frustrated with being alone. Wishing I don’t envy people who get to go to work. Trying to stop my brain from thinking that July 17th is not necessarily a day I need to celebrate. I have this overwhelming urge to just sleep the day away and wake up on the 18th as a 32 year old without fanfare, pomp & circumstance.
My mother would be horrified. She doesn’t want me to be sad. She wants me to celebrate my life. As a mother I can totally understand that. As a patient, I want her to go concentrate on her other kids and just leave me alone to wallow in my despair. I remember looking at myself when I was 100lbs thinking, “you look awful!” and now at 163lbs I’m thinking, “you look awful!”. Even though every single member of my family swears I need not lose a pound. They’re creole, guys…I was considered unhealthy at 145lbs! LOL! ah, yes, all hope isn’t lost. I can find laughter or laughter finds me. Maybe I should take that and hold on to it, ride it all the way up to the light using my Batmom cape.
*on a sidenote: If you have an autoimmune disease and find that you are suffering from anxiety, ptsd and/or depression, seek help. If you don’t think you have symptoms, you should still talk to someone. You may be suffering from a form of depression without even knowing it.