Sunday, June 1, 2014

Migraine and Headache Awareness Month Blog Challenge 1 – If Things Were Normal

I’ve been told, doctors consider it very important that patients are able to imagine their lives beyond their chronic illnesses such as Migraine. A patient’s ability to do this can help to determine their success in better management.

Keeping my eye on the prize is super easy for me. I don’t know if it’s because I lost so much when I got sick, and had so many plans from the early stages of my life, or because I’m just normally a *think forward* person. 

  • If God granted me freedom from my chronic conditions – Migraine, dystonia, chronic pain and spinal disease, hyper-mobility, autoimmunity (lupus, Sjogren’s Syndrome, Graves’ Disease and ?) I would pick my life up from whence it was left. 
  • I would dust off and clean out my enormous stained glass studio and start designing and making beautiful windows again. I would renew my love of art shows and begin attending them again because interacting with my clients and the other artists there was such a joy to me, it’s difficult to tell you how it felt. People have always had trouble remembering my name, but everyone knew me as “The Angel Lady”, and I’d finally be able to get all these creative designs out of my head and into the real world for me to personally enjoy and pass on to others. I used to make my living as an artist and designer and I really miss it.
  • I would begin spending time and riding my beautiful horses again. Believe it or not, our farm was reasonably successful in breeding, training and teaching riding. I LOVED working with kids and the horses, and was very proud of the very young national level teams I took to compete in knowledge competitions as well as riding shows. I had nine year olds nearly acing the state college horse production final, which was amazing to watch! I have an unused room full of trophies, with walls covered in plaques my own horses won, most with my daughter astride. I don’t go there because it reminds me of what I’ve lost. I sold nearly all my horses, including the deep golden stallion who was well-known in our breed and had beaten horses from all over the world; the little mare that helped my daughter win six national high point titles in a single year; and Nicole - the only daughter of a very famous exported, deceased stallion, still producing beautiful foals. My stallion was abused and is now deceased, so if I could, I would dream him back to life and back home with us, as it was before his suffering. I would buy back Nicole and Ali, the two mares that were such a big part of our everyday lives, as well as Nicole’s foal it took me years to produce, that I never got to see. I would ride my gentle old horses through green fields and forests, and watch deer grazing in the tree lines, and I wouldn’t have to worry about the sun making me sick.
  • I would get a normal job, probably as an emergency dispatcher again. 
  • I would go to church every Sunday again. It’s been many months since I could make it to a Sunday service, and I miss it so very much.
  • I would start taking Emergency Medical Responder calls again – something I only recently have had to stop doing.
  • I would go back to school. I had my kids early, because we were told that was our only chance of ever having them at all. I was a full-time mom, choosing to work jobs that allowed me to be with them 24/7. It also meant putting off finishing school, something I have always regretted because I got sick before that could happen. I dreamed of a terminal degree. Not having the right letters after my name often means that I receive little respect and few opportunities, despite my experience, intelligence and knowledge. 
  • We would become foster parents. This is something I’ve dreamed of doing since meeting my lifelong best friend whose family suffered through the foster care system. I am bursting with love for kids, and for some reason, work well with troubled kids, often utilizing the horses and animals that can often change their lives. 
  • I would finish my house. I have a background in restoring and remodeling homes, but when I got sick I had to stop. About 7 years ago we hired a contractor to remodel this home. We demolished much of it to the studs and began to rebuild, but one day our contractor left and never returned. Instead of a peaceful space to live, our home is filled with boxes, an un-finished particle board floor (replete with slivers when I’m not careful) and no doors, trim, and minimal paint. One room still needs more drywall work, having been left more unfinished than the other rooms, and the new siding was left nearly finished. Even the custom cabinets we had made were never finished. Surrounded by an unfinished home in chaos makes me feel that my life is unfinished and chaotic. There is nowhere to go for peace. The basement is filled with the supplies to finish the project, and it’s impossible to use our garage for the cars that are being weathered outdoors. Even the yard is a problem. Nearly 2 years ago we hired a firm to re-grade and redo our yard. They’ve never showed up to do the project despite multiple meetings. I have still not even seen drawings to tell me what it is going to look like. So, arriving at our home means walking through mud and weeds through the back yard, where once there was a nice front yard and front entry porch. Having friends over is not an option for my family, and this often makes me feel quite lost. Living in the country is isolating, even when inviting others over is an option.
  • I would travel. Now that the kids are grown and married on their own, I want to do things and go places. Simple things like a trip to the zoo can only be a dream right now due to light sensitivity. A day in the car leaves me sick and in pain, and the fluorescent lights of a simple museum will also make me sick. I have a bucket list of places I want to visit, such as Petra, the sphinx and the great pyramids. I want to take my kids to see Italy and Greece someday, and swim in the beautiful blue waters there.
  • Which brings me to the last thing I would do: I would fix our below-ground swimming pool. I grew up swimming competitively, practicing sometimes twice each day, since I was seven years old. Water was my second home, and having a pool that needs repair makes me sad. I can’t swim during the day anyway due to light problems, but if those were gone, instead of filling it with dirt as we are currently planning, I’d fix it up, get it going, and again, use it every single day!

My list is long, because I’m not done with this life yet. These are the things that are important to me beyond my family. I pray every day to be freed from symptoms, and doctors, and insurance companies, and monopolizing my husband’s days. I don’t know what the future holds, but I guarantee you that I’m giving it everything I have right now to get better so some of these things might someday be a reality! I’m also doing my part to help find answers for other patients someday we won’t have to ask about life lists like this.

Today is the first day of Migraine and Headache Awareness Month (MHAM), which means that it's also the first day of the Migraine and Headache Awareness Month Blog Challenge. Every day this month, a new challenge prompt will be posted on the American Headache and Migraine Association blog. We bloggers then write on these prompts to help raise awareness and support and to reduce stigma. - See more at:
Today is the first day of Migraine and Headache Awareness Month (MHAM), which means that it's also the first day of the Migraine and Headache Awareness Month Blog Challenge. Every day this month, a new challenge prompt will be posted on the American Headache and Migraine Association blog. We bloggers then write on these prompts to help raise awareness and support and to reduce stigma. - See more at:
Today is the first day of Migraine and Headache Awareness Month (#MHAM), and the day #1 of our Migraine and Headache Awareness Month Blog Challenge (#MHAMBC). - See more at:

Today is the first day of the National Migraine and Headache Awareness Month Blog Challenge. Today's theme is: 

Today is the first day of Migraine and Headache Awareness Month (MHAM), which means that it's also the first day of the Migraine and Headache Awareness Month Blog Challenge. Every day this month, a new challenge prompt will be posted on the American Headache and Migraine Association blog. We bloggers then write on these prompts to help raise awareness and support and to reduce stigma. - See more at:

#MHAMBC  #MHAM  Find me on twitter at @ESchnak

Live your best life,

Ellen Schnakenberg

Friday, May 30, 2014

Migraine and a Medical Cannabis Update

Migraine and other conditions that lead to chronic pain and nausea can sometimes benefit from the use of medical cannabis (marijuana). As is the case for most treatments, what works for one, won't for another. I wish there was more research on the use of medical cannabis and the potentially helpful chemicals it contains, because of the extreme need for more new treatments and fewer side effects, however, I don't really know where I stand on its use for Migraine specifically. There simply isn't enough helpful research. Coming from a law enforcement family and background, I have very definite feelings about its recreational use in states where it is legal or illegal. That said, there is an update on the medical use of cannabis that hit my email today, so I thought I would share it for those interested in the ongoing medical cannabis saga.

NIH Cannabis Plant Chart

Cannabis for medical use is legal in a few states with varying results. It is still illegal on a federal level however, and this can cause problems for those providing cannabis to patients in states where it is legal. In a nutshell, the federal government currently has the right to ignore the state's legalization and interfere with cannabis production, sales and use.

Public opinion on medicinal cannabis legalization is shifting. By a 219-89 vote, the House of Representatives passed legislation that would have blocked federal government interference with individual states' enactment of medical cannabis laws. The bill has been added to another bill related to the Justice Department's budget, and still requires Senate approval.

As a patient advocate, I wish there were a way to convey to readers how distraught I am at the loss of so many Migraine and chronic pain patients for lack of a treatment that helps them. There are many treatment options which give the illusion there's no reason for suffering, but none work for everyone. The fact remains that many of us live lives struggling just to breathe. The cannabis and psilocybin issues need to be considered and discussed so we stop seeing patients die over the misunderstanding between a chemical misused for *fun* and the same one used in an appropriate medical setting, to save lives. 

And, the debate continues...

How do you feel about the medical use of cannabis?

How do you feel about this new legislation?

Thursday, January 2, 2014

Quit Micromanaging My Health, It's My Business!

Trigeminal neuralgia is severe facial pain known to doctors as the Suicide Disease, and for good reason. Not only is this type of pain agonizing, it is difficult, often impossible to treat. I need treatment for my trigeminal and glossopharyngeal neuralgia, but the day I walked in to start things off, I was told the government has denied me the beginning to my treatment: a shingles vaccine.

Nope, didn't ask a government agency to pay for it or even to administer it. They however, without being a physician who has examined me, or knowing me or my illness, have created a blanket law that states that no one will be allowed to give me the vaccine until I am 50, even with my doctor's orders and written prescription. Not in the USA anyway.

I am 49.

My neuralgia is suspected to come from my autoimmune disease, Sjogren's syndrome. It began many years ago in my right ear, and has slowly spread. A few years ago, it showed up on my left side too, and lately has spread like wildfire. Without quick treatment, my neuralgia may become worse, and permanent. Since I cannot safely take the oral meds needed to try to control it, I am in trouble. My rheumatologist has prescribed a biologic drug to modify my errant immune system, which we're praying will help to control the inflammation and crazy nerve impulses that control my life. We've been slowly working up to this treatment over the last year and a half.

I now have what feel like knitting needles stabbing my eyeballs, bee stings in my eyelids, and scissors stabbing my jaws, ears, throat and tonsils as well as the base of the right side of my tongue. Some days I can neither eat nor drink, and talking is impossible without indescribeable pain. Add a Migraine, and I am frantic with pain that isn't controllable in any way.

My doctors feel that the biologic may be helpful, but I need a shingle's vaccine first, to make sure that, after we tank my immune system, I don't make the nerve problem worse by getting shingles (a nerve condition) on top of everything else. 

The government thinks I am too young. It hasn't taken into consideration that this immune system treatment will be lifelong, and dangerous. It hasn't taken my disease into consideration at all. That's what my doctors are for. My doctors insist this is vital and I agree with them. Simply said, neuralgia worse than this is not compatible with life. 

I don't know what I can do at this point, but pray and make phone calls. Starting today, that's the plan. Right now, I get by, moment to moment, day by day. I haven't blogged much lately, due to the medications, the intense pain, the brain fog and bad eyesight, and I am so very sorry.  I hope you'll hang in here with me. 

This girl could use a few friends on her team :D