Disclaimer: Erica C. is a Speak Your Migraine Ambassador and all writings on this blog are her opinion.
I made a very important, but also devastating phone call today. Devastating because I made a decision to say good-bye to the woman I was before the long list of diagnoses made their presence known. Usually, I try to write positive and encouraging blog posts, but I also want to be real. I am trying to be my own cheerleader, but also mourn my old life. It feesl like two people narrowing things down to one. While it’s sad and depressing, it’s also freeing and exciting.
Finding Financial Stability within a Chronic Migraine Diagnosis
At the encouragement of my doctors and psychologist, it is in my best interest to apply for social security disability. I cried on my husband’s shoulder after the attorney approved my case. I spoke with an intake agent today, gave her my health history and my employment history. She told me she’d discuss all of it with the lawyer and call me back if they decide to take my case. While I know I need the stability financially, I also had a hope that they’d feel I wasn’t disabled enough. Obviously, that wasn’t the case, because I now have one.
I think the best word to describe how I’m feeling today is heartbroken. Completely. I know I’ll get past it, but for now it’s strong and festering. I’m saying goodbye to who I am, was. I had childhood dreams of being who I became. I am an intelligent woman, but we all know that with neurological symptoms, that smart woman falls away. Like petals of a wilting flower. I know I’m still intelligent and strong, but not every day anymore. I find parts of my old self sometime and it feels fantastic to see her again. The difficult part is watching her fade away until who knows when.
A New Purpose Through Migraine Advocacy
I am becoming a different woman these days through migraine advocacy. Excited and encouragement is what I feel because of so many of you. I receive your messages of thankfulness and they keep me going. What I love is sending out messages on Facebook, Instagram and Twitter about how we’re strong warriors. Because we are. We are not alone in our fight to be heard. Migraine is a misjudged and misrepresented disease. Most people who don’t understand and use migraine and headache as a joke to serve their own selfish purposes.
A lot of migraineur’s are left to feel judged and belittled by people they most respect, like employers, close friends and family members. I’ve even been made fun of for standing up for people with migraine. I’ve been called a “cry-baby” in a few comments of the featured videos I’ve been on at the Speak Your Migraine Facebook page. I’m ok with that, because there are even more comments of empathy and understanding from family and friends of migraineur’s.
Opening Up
I know I’m doing the right thing by opening up my life, my family’s life, and sharing the ugly truths of what life is like with migraine. I even talk about the woman I was. My husband, myself, and my kids sat down and discussed what this means for us. The type of advocacy I participate in involves opening wounds and sharing embarrassing stories. Not all advocacy is like this. But we decided that if we were going to going to fight for migraine, we were going to get ugly about it. Migraine is ugly. Life with migraine is ugly. That’s why we look for the beautiful parts of life with migraine.
Finding Peace with Disability
I know I kind of went through a little rant, there, about migraine advocacy! I’m ok with that. It’s what helps me accept my journey to disability. Chronic anything is quite the journey. We all go through the phases of mourning. I’ve been putting it off 5 years now. I’ve done everything in my power to try to hold a job, find parts of the woman I was. Even going back to school as a full-time student. I worked part-time and had to leave because, well, hemiplegic migraine, and I could no longer function as a student half-way through my degree and I had made peace with leaving school. But instead, I felt like I had to quit one more thing. I did that alone though. It was just me. I’m not alone anymore. My husband is now my caregiver and he and I travel for migraine advocacy. He is an advocate himself these days. I don’t know that I could do it alone, logistically.
It’s Time to Let Go and Nurture the New Me
Because of my symptoms, triggers, and hemiplegic migraine being a rare and disabling condition, I have difficult time navigating airports. We usually book wheelchair service to get us through in order to prevent a migraine attack. Power walking or running usually trigger a hemiplegic migraine. I don’t drive, so I depend on Stephen to get me where I need to go. If I am unable to speak due to aphasia, he’s my voice. If I am unable to see, he’s my eyes. He’s my advocate through and through.
I don’t just have migraine, I have a few other comorbidities. So, life is high strung and takes a lot of management and planning. I think by applying for disability I will finally be able to leave the stress, depression and anxiety of not working…if I win. I had an amazing career in a high paying field and it paid handsomely. I was the breadwinner in our family and we were happy with that. Stephen is now in school full-time and is a disabled veteran.
He has his own medical problems to deal with in addition to managing mine. Our daughter has had migraine since she was 8, so there’s two of us. Our son has his own medical diagnoses. It’s overwhelming, but we get through it. It’s on Stephen’s shoulders to provide for our family. Without a career, he has struggled to provide.
Thankfully, with the help of his military service, Stephen is now a full-time student. We don’t bring home much income, but I know when he graduates and he’s doing what he loves, things will turn for the better. I just want to be able to help. If that means filing for disability and letting go, then that’s what I’m going to do. Negative pride is no longer allowed a room if it brings negativity into my life. I want to have pride that I did the right thing. Pride shouldn’t hold people back from moving forward.
Learn More
15 Things to Consider in the Morning with Hemiplegic Migraine
5 Worst Migraine Symptoms You Experience
Disclaimer: Erica C. is a Speak Your Migraine Ambassador and all writings on this blog are her opinion.
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