Not the journey I planned


This is a day to reflect.
For the WEGO Health family, we reflect on the inspiring and tireless work Health Activists do every day.
Reflect on your journey today. What are your thoughts and hopes for the future?


This wasn’t my first option.

© Lehmanphotos | Dreamstime Stock Photos & Stock Free Images. Used with permission.
© Lehmanphotos | Dreamstime Stock Photos & Stock Free Images. Used with permission.

Eight years ago I started this journey with a dream to finish graduate school, get my license, and work as a therapist until the day I retired. It had been my dream for so many years that I couldn’t imagine a life in which I wasn’t a therapist. I fought so hard to get there and even harder to stay. I accepted one of the most flexible jobs I could think of in an effort to keep working.

Health problems derailed my dream.

No matter what I tried, I kept getting sick. Over time I got sicker and sicker. I tried working part-time as an independent therapist, but even that proved impossible. The attacks were too frequent and unpredictable. I had to cancel or reschedule so many appointments. It wasn’t fair to my clients. As much as I loved my work, they deserved the consistency and stability I simply could not provide.

Applying for disability

ssa_logoBy late 2012, I accepted that applying for Social Security Disability was my best next step. I remember the first day I spoke to someone from the Social Security office. It was a routine screening call to verify two things:

  1. That I had worked enough to qualify to apply for Social Security Disability Income, and
  2. That I was not earning more than the Substantially Gainful Activity (SGA) limits.

The man was very kind, expressing his understanding of Migraine as a serious disease. He mentioned that his wife was totally disabled by Migraine whenever she experienced an attack. I felt validated and reassured that my claim would be taken seriously.

It helped a lot that the local office knew me personally. In a previous job, I had accompanied clients to that office for help with their disability claims. Also, my husband had volunteered as a Representative  Payee for a few years. Thanks to my previous experiences with that office, the biggest hurdle was passed with ease: I was a credible applicant.

All that paperwork!

I didn’t have time to worry about if I was approved. It simply took all of my resources just to get the paperwork completed by the deadline. Only when the forms were complete and returned to Social Security did I begin to worry. For three months I tried to distract myself from thinking about the possibilities. The closer I got to the deadline, the more I prepared myself for a denial. I just kept thinking out loud, “Nobody gets approved the first time.” to which my husband would gently remind me, “…except that your clients did, every time you helped them.” He was right. I was just too scared to risk being confident.

Finally the answer came on the 4th month after application. I had been approved, but only for one year. I would be subjected to a review sometime after the end of the first year. It was better than nothing and at least it wasn’t a denial.

Doing it all over again

About 18 months later, the request for review arrived. I was asked to complete a Migraine Headache Questionnaire and find someone to complete the Third Party Adult Function Report once again. In writing this post, I ran across my copy of the Questionnaire.  At the bottom of the form, I wrote, “In short – I am doing everything right and I still get so many attacks that I can barely function to care for myself, let alone try to work in even the most flexible environment.” That’s an accurate assessment of my health status even today.

Sweet relief

Once again, the decision was favorable.  Only this time, the response did not include any mandatory reviews. I stared at the letter, letting it all soak in. My disability status was permanent. A few months later, my Medicare card arrived in the mail with instructions for open enrollment. In addition, I was approved for a Total and Permanent Disability Discharge of my insanely large student loan. That was such a relief for my family!

Keeping myself busy

Blogging started out as a way to document my journey. In the beginning, my posts were simply updates on my progress. Over time, I realized that I had a lot more to say. As people started asking me questions, it occurred to me that there was more to this blogging thing than just telling a story. I had a responsibility to share what I had learned.

A pleasant surprise

migrainedotcomLast March I got the surprise of my life. Health Union was looking for a moderator for My friend Nancy suggested they talk to me. I was floored. Someone noticed me. Then in June, they gave me the opportunity to write a few features for Migraine and Headache Disorders Awareness Month. I’ve been writing features for ever since.

Just a few months ago I discovered some big names in headache medicine were following my Twitter feed.

How in the world did that happen?

I felt surprised, honored, and humbled.

I know I have a big mouth, but seriously…most of the time I end up pissing people off. I had no idea anyone actually read what I wrote, let alone catch the attention of some big names. Now the pressure is on to maintain a certain quality.

Can I keep it up?

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