By Sara Batchelder, Guest Columnist
I have had migraine disease since I was 22. My first migraine was in 1992, the year I graduated from college.
I am now 45, and my migraines have become chronic and daily. I have lost two jobs, many friendships, my social life, and my relationship of eleven years. This year, I also lost my ability to work full-time at a regular job. The only reason I can still work part-time is that my ex employs me and allows me to work whenever I am able. Thank goodness for that. Working gives me a purpose and makes me feel like a productive member of society. It is an extreme struggle to work twenty hours a week though.
I also have thyroid disease (my thyroid gland was removed when I was 29), celiac disease (I have been 100% gluten free for a year), depression, anxiety, infertility, and extreme allergies to many things, such as food, pollen, dust, cats, you name it.
I now have a multi-pronged approach to my treatment. For migraine, I have botox injections every three months, I see a “natural MD” for various treatments, and I take Relpax (a triptan) and opioids (Norco and morphine).
I am still learning a lot about celiac disease, but I stay ever vigilant that I do not ingest any gluten whatsoever, even one molecule. It’s a learning experience and constantly challenging. For instance, I will visit a restaurant that I consider safe, get “glutened” and cross that restaurant off the list. I am down to four restaurants that I can eat at.
Since I am too sick to cook for myself most of the time, I graze on various packaged food - some good, some not so good. I eat protein bars when traveling, although I do not travel often anymore. It’s a lot of work to make sure all the food I eat is gluten-free and free of all of my other food allergies.
I’ve been dealing with allergies for all of my 45 years. My “natural MD” (my voodoo doctor, as I jokingly call him) gives me small doses of LDA shots, which are helping a bit. He also believes that I have a lyme-like disease called Bartonella, which he is treating me for. I am on so many vitamins that I won’t even go there. I take Wellbutrin for depression, nothing for anxiety, and since I am now 45, the infertility has played itself out.
Deep breath. That’s a lot of illness and treatment.
Even with all of this, my scariest problem today is the government’s war on pain patients who take opioids. After the DEA stormed one of my doctors’ offices in bulletproof vests with guns drawn (to request appointments with two doctors -- couldn't that have been done by phone?), all of my doctors, but one, have withdrawn ALL narcotic treatments for ALL migraineurs.
It baffles me why this policy exists. This is discrimination plain and simple. I want to sue, but no lawyer will take the case. I know that many addicts lie and tell doctors that they are migraine patients, since migraine is an invisible disease that cannot be diagnosed with blood tests, MRI’s, or anything else, but these are doctors whom I have a 10 year relationship with!
They are either petrified of the DEA or always thought that I was an addict, and didn’t care enough to deal with that. Either way, what the heck I am supposed to do? Without my weekly pain shots, I can no longer work full-time. If I still didn’t have one doctor on my side, I’m pretty sure I would have committed suicide.
My private disability was denied due to some technicality. SSI pays less than I can make part-time and SSI doesn’t allow the disabled to work part-time anyway (don’t get me started on that).
I am very, very fortunate to work in California, where I have been on part-time disability. But it will only last for one year, so I will be on my own again soon anyway. I don’t know about other people, but there is no way I can survive in California on half-pay. I was barely making ends meet while working full-time. Now that I am single again, I cannot rely on someone else to support me. It is terrifying!!!
I have met and will soon meet again with members of Congress to discuss more funding for migraine and headache research through an organization called Headache on the Hill. That organization does not support opioid treatment for migraine at this time, but I still want to address the opioid issue with other pain patients. Who will join me?
Sara Batchelder lives in California, where she received an MBA with honors from the University of San Francisco and works as a controller for small architecture firm. Sara volunteers at her local credit union and tries to advocate for migraineurs as much as she can.
Pain News Network invites other readers to share their stories with us.
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The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.