Headache | A Pioneer's Journey

Nurse uniform in the 1900’s. (Photo credit: Wikipedia)

Yesterday a phone call from an endocrinologist’s office left me seething. An administrator — she didn’t offer a name or title — indicated in a polite but vaguely superior manner that I was not requesting services at the correct clinic. There was an icy undertone, as if the fact that she had to contact me to explain all this was putting a huge strain on the clinic’s resources. It took me a good ten minutes of cajoling, conniving, convincing, and just plain bullshitting to get her to understand that it wouldn’t be a complete waste of the endocrinologist’s precious time for me to come in, but it wasn’t until I uttered the magic word ‘fibromyalgia’ that she granted me status as a legitimate patient. What is this place, anyway? Am I creating such an inconvenience that I cannot be seen by this doctor unless I successfully pass vetting by a bureaucratic toady with a list of secret code words?

I was not surprised that the doctor at this clinic was reluctant to take me on as a patient. My referral, sent weeks ago from my PA at Fort Riley, had been rejected on the grounds that my “specific” needs did not “encompass” the doctor’s specialty. It was a possibly a coding error made by the insurance company making the authorization for services. The nurse from my referring clinic spent several days making phone calls to the clinic as well as my insurance company on my behalf, smoothing over the misunderstanding and pleading my case. I don’t know if that is even part of her job, but she knows that I am sick. She has seen me too many times over the last few months to not want to help. And she must have deduced from the cryptic, noncommittal responses coming from the endocrinology clinic that I would need a champion.

It’s been difficult to get good medical care in Kansas. My tiny local Veterans Affairs clinic seems to always be bogged down and overwhelmed; I can’t get in but once or twice a year, and that is just for routine blood tests or ‘Well Woman’ visits. God forbid anything goes wrong in between! When I lived in the Black Hills, I had the best VA care. If a non-emergent matter arose, chances were I could get a same day walk-in appointment, and the staff listened to my needs. Here the story is different. During a non emergency episode when I needed immediate advice (which happened in between my allotted visits), the local VA staff either misunderstood or misjudged my situation, leaving me to seek medical attention elsewhere. After the incident I plan not to return to the clinic. Luckily I can still turn to the clinic at Fort Riley, where I trust my physician and nurse. The problems arise when they have to refer me to specialists.

I realize that it’s a Me Problem. It’s not the world that’s strange, it’s me. I’m the misfit. I take supplements of turmeric and holy basil and treat hormonal breakouts on my face with a salve made from an old Native American recipe. I use cabbage poultices and rub herbal oils on my forehead to fight off migraines. I am treating my current ailments using natural remedies instead of chemicals and drugs. I abhor drugs. I am probably a traditional doctor’s worst nightmare. So if/when I go to a specialist and invariably open my big fat mouth to spout things like “I am researching home remedies and the use of ethnobotany for possibly treating my migraines and hormonal imbalance” or “I really don’t want to take any more pills” I run the risk of being written off as a crazy jackass. Even the mere mention that I take herbal supplements and seek chiropractic care results in odd looks, as if I am lapsing into an unknown language during the dialogue.

Yet my specialists don’t seem to take the time to actually read the medical records my referring clinic is required to fax to them. Instead I am interrogated with rapid-fire questions, in a patronizing tone. If they had read the records, they wouldn’t have to ask me the questions, and we would have time to discuss the most important part of a visit to any doctor: what type of treatment is truly best for the patient? I am sure these specialists are brilliant, and with limited amounts of time in their work days they have to make quick decisions based on what information they gather from patients. I probably don’t help with my rambling history of odd symptoms intermingled with home remedies and Native American medicines. But damn it! They are supposed to be highly educated professionals with vast stores of knowledge about various types of treatment. Why are they so single-minded about ramming more pills down my throat? And when did practicing medicine medicine come to include treating patients, and potential patients, like children, or worse yet, like criminals who have to prove their validity before receiving care?

Maybe I am wasting their time with my herbal supplements and quackery treatments. But it’s my body. I don’t think it’s unreasonable to want better quality than the living death sentence my very first neurologist prescribed, something to the effect of “take these pills every day for the rest of your life and pray for early menopause to ease the pain of your migraines”. The nerve! Certainly that can’t be the best option, for anyone. If the care I am receiving here is so laughable, there is at least one thing that I have taken from my experience, and I do consider it a blessing. I, and only I, am completely and unequivocally responsible for my health. Doctors don’t know everything. Medical professionals can and will do their best (I hope) for me, but it is ultimately up to me to take care of myself. I can make decisions about my body and my health, because sometimes there will be no one else willing to take the steps to ensure my health. If it takes being a medical misfit, then so be it.

I am my own best doctor, nurse, and patient!

— G

I took a short break from blogging — and life — due to severe illness (and panic attacks/hysteria). During that time I thought about what has been missed, and what is important in life. This is the story.

At the end of February a friend from my childhood approached asked if I would be interested in joining a fitness group on Facebook. Over the last six months I had lost around twenty pounds, but I am not what you would call “in shape” unless that shape is defined as “floppy”. So, thinking this might be a great way to reevaluate some old habits and improve myself, I said “Sure!”. The rules were simple: since we are all geographically scattered and have various weight loss and fitness goals, we could check in throughout March with ideas, thoughts, milestones, and even complaints. I liked the concept because I needed a reason to start taking better care of myself.

At the beginning of the month, we were encouraged to take a “before picture” to motivate ourselves to firm up those muscles and shed those extra pounds. I wasn’t thrilled about the idea, but I figured what the hell, why not be honest about myself? So I took a selfie showing my abs, or lack thereof. Ironically, this is one of my better selfies.

So after my “before” pic was out of the way, it was time to get the ball rolling on other fitness goals. I started making homemade smoothies chock full of spinach, kale, frozen fruits, ground flax and chia seeds, and almond milk. I planned meals for the family so we were all eating better, and I made sure I was sleeping exactly eight hours each night. I started to think about an exercise plan — maybe Insanity again…I was feeling motivated and ready to roll!

And then, the unthinkable happened. My migraines started to take over my life. Before I knew it, March whizzed by in a blur of ice packs, Ibuprofen bottles, and fragmented memories that may not have actually happened. My brain became so poisoned from the kindling (a term for repeated attacks of migraine that are not adequately controlled or treated) that I started to lose cognitive function. After several weeks of torture, the migraines broke me. On Tuesday, crumpled up on a chair and in tears, I voiced to my husband my resentment and fear that my migraines were shutting down my life. I would have to quit my job (the one I just started) and live out the rest of my days on the couch, in my bathrobe. Tears streamed down my cheeks as I fumed that I didn’t understand why a disease so brutal could exist, why so much time had been robbed from my life for no good reason. As I cried, I felt better for releasing guilt and anguish, but worse wasting what little energy I had left.

Exhausted and dejected, I cried all the way to the clinic, absolutely certain there was nothing that could be done. My husband had warned me that there wouldn’t be a magic pill waiting there to fix everything. But I have got to stop doubting my physician! After all, the man cut a skin tag off of my armpit so that I could shave it, he entertained my food sensitivity ideas (when they seemed to be keeping the migraines at bay) and he has never dismissed my concerns with condescending remarks about “women’s issues” like some male specialists I’ve dealt with. So when I showed up in his office with smeared makeup and a bitchy/dopey expression on my face, he said “Those are some nice shoes. Let’s talk about the headaches.”

Okay, I still made a point to photograph my fabulous Zara shoes while hanging out in the doctor’s office.

I will spare you all the gory details because you don’t need to know everything, but: hormonal imbalance was (mostly) blamed, so we implemented a simple solution without a trip to the Army hospital (why I love my physician). Also, a shot of high potency anti-inflammatory in my right butt cheek killed most of the pain in my head, once the drug traveled through my system. I did squeal like a five year old getting immunizations, just for the record. By the time I left the clinic, I was still a bit loopy, but feeling better, and so grateful to have been taken seriously and offered a solution that was not invasive to my body or degrading to my sense of self respect.

I stopped at the mailbox on the way home and that turned out to be a brilliant decision. Van had ordered a special device for me from the Canadian company Cefaly, and it had finally arrived. I couldn’t wait to try it out before picking up the kids from school! I read the instructions and carefully placed the electrode on my forehead. Yes, you read that correctly. The Cefaly uses an electrode to send electric impulses into nerves that transmit pain sensation, particularly during a migraine. While using the device I thought about things. What had I been missing in life? What was important? What had I moved away from and traded for thing that weren’t as important? What did I want back? And what was I willing to work for, and even fight to regain?

Using my Cefaly for the first time! This picture is ridiculously huge, sorry! Seriously, WordPress…

Having chronic migraines is infuriating. When I get sick from them, I get really sick, and I feel like I become a super paranoid, slightly psychotic version of me. For the last few weeks the headaches were so bad that I couldn’t turn on my computer and type, or even read another blogger’s post. I missed you Jamie Ray, and can’t wait to read about Gracie’s adventures (got the e-mail and saved it)! I struggled to get dinner on the table for my very patient and loving family. You guys are awesome for caring and being kind to me while I was a basket case, and I owe you strawberry rhubarb pie. The Facebook fitness group really didn’t know about my struggle, but was just there as a motivating and supportive force of nature, so thank you! I wish you all the best and hope to see you all accomplish your goals. And a big hug to Ross the Dog, who never left my side the whole time I felt ill; love that furry buddy!

Ross the Dog, snuggling against my legs when I didn’t feel well.

Because of how my illness has affected my life just recently, I have had time to think (and do little else) about what I want out of life. If my migraines have taught me anything, it is to never take for granted the time I am given. I must take advantage of the life that I have and live it as best I can! Oh, how I have missed so many things, but there is still so much to do!

— G