Updated: Sep 4, 2019
Migraine is still such a touchy subject for me right now. Why do you ask? I feel guilty. I feel guilty living with my parents, I feel guilty not working as a full time nurse. I feel guilty being a part time daughter, sister, friend, aunt and girlfriend. I feel so guilty when all I can manage to do is binge watch Netflix all day. Sometimes I can only listen to the TV with ice or an eye mask on.
It is incredibly hard to explain that I am in a mega ton of pain when I look totally normal. And some days I have a medium amount of pain might which means a pretty decent day, and I can do some things.
I think in terms of migraine now. I don't go anywhere without my meds - and they are copious, THC, ice packs, cold wrap, Biofreeze, pain salve, sunglasses, water bottle, essential oils, and amethyst roller. It is ridiculously hard to plan anything.
If the weather is going haywire, I wake up when the is migraine greater than 8/10 and/or moderate nausea, I know it's a pajama day - and not the fun kind. And if I can plan, and migraine happens I just have to do my best medicate and roll with it. And the days where I MUST do a thing are usually my worst days.
It all began when I was a pre-teen and possibly even earlier, I had been having tension, "sinus", and just general headaches. I learned that a cola, 800mg of ibuprofen, and rest usually did the job. I could usually bounce back after a few hours. I thought they were just really bad headaches because the pain was mostly random (all over, on the left or right side of my head - never the same), and I've never had anything remotely resembling an aura.
They started getting progressively worse, so when I was about twenty-seven, I finally saw a neurologist who diagnosed with me migraine. The neurologist gave me some triptans to try, and that was the extent of her help. Later, my primary doctor put my on propranolol as a preventative and Phenergan for nausea. Phenergan is my best friend when it comes to nausea. If the pain was bad, the nausea was worse. All of that seemed to help for a while, though I was still getting migraines on the regular, these medications plus my usual ibuprofen and cola were at least keeping me mostly functional.
Of course the migraine exacerbated when I was going through a divorce at about thirty years old. After it was all said and done, I moved back to Wisconsin, closer to family. I had started a nursing job in a Milwaukee NICU, but wasn't happy with it, so I decided to start travel nursing.
I worked all over the country as a neonatal (babies) ICU nurse pulling twelve hour night shifts. It was awesome and intense. Although I loved my career and even night shifts, but it was taking a serious toll on my health. I called in sick because of migraine way to many times. There were some hospitals I wasn't asked back to, some that cancelled my assignments, not that I wasn't a fantastic nurse, but because - just because I couldn't make my shifts with a horrid raging migraine.
When my body was worn out and needed to be done traveling, packing, and moving every three months, and settled down in beautiful Denver, Colorado. I landed an excellent job working at the children's hospital in the NICU working twelve hour nights. I loved it. It was an amazing place to learn. I gained so many skills, helped so many babies and their families, and my coworkers became my friends. But still, I struggled with migraines and, unfortunately, missed a lot of work.
In January of 2016, at thirty-five years old, I began having severe intractable daily migraine or basically a migraine all of the time. Every minute of every day, I was in constant throbbing pounding pain, pressure, nausea, dizziness, light/heat/smell/and sometimes sound intolerance and/or fatigue. Many times my whole body just shakes from the pain. I think my body had just had enough of my other complex medical problems, long twelve hour night shifts, and helping others without helping myself.
I was blessed to receive short term disability for about four months. I tried to go back to work, but the most I could do were four hour day shifts. My boss, who was so incredibly patient and helpful with me, told me the hard truth. I hadn't yet been there a year, and human resources was pushing for termination. So I resigned. That was incredibly devastating to me.
I loved my job and career as a NICU nurse. Thoughts flew through my head. How was I going to support myself now? Will I ever be able to work as a RN again?
I was extremely blessed to find a neurologist in Colorado that was kind, caring, and looked at the big picture. She was the first doctor to really listen. She gave me so much hope. My very first appointment was two and a half hours, and every appointment after that was at least forty-five minutes with her. I was happily amazed. She put me on gabapentin and gave me breakthrough medications as well. She sent me for a multitude of tests to try to find the cause of the migraine. Of course, I am the complicated patient, and there was no cause to be found… yet. So we decided botox would be great to try. She coordinated with the pain department for botox.
Things were finally on a roll. And, I was able to feel like half a human on these meds and botox. With this intractable migraine diagnosis, as with everything in my life, cried, laughed, cried some more, and used all of my tumor humor. I just accepted it the best I could, trying to do my best to care for myself.
I ended up cashing in all of my IRAs, and taking a few months off while I looked for an easy day job. I found a part time position giving flu shots that fall and then fell head over heels into pediatric home care nursing.
Home care nursing was exactly what I was looking for, I just didn't know it yet! I absolute loved it! Fantastic patients and families to work with, more flexibility in my schedule, I could wear regular street clothes (which often consisted of flip flops, leggings, and the t-shirt of the day), and no fluorescent lights! Plus, I got to go outside taking my patients on walks, school, museums, meals, and of course doctor visits. In home care, the term katebrain was coined. I am in a perpetual state of brain fog from the migraine, always forgetting things, or running behind, so the family that I was working with called it katebrain! Thankfully they loved my crazy special brain!
Unfortunately I was still only able to work one to two, maybe three eight hour shifts per week, and that was just not enough to sustain my life in Colorado. My lease was up in January of 2018, and I made the extremely difficult decision, but necessary (and now the biggest plot twist of my life) to move in with my parents in Illinois.
Besides the migraine (which was bad enough), I felt like I lost my independence. I had lost a city that I loved, and even more devastating a job that I loved dearly. I was grieving for a life that might have been normal and of my choosing. And that triggered a huge amount of depression. I felt so alone despite having family around me. It took me almost a year to find purpose and joy again.
The medical side of things in Illinois was extremely frustrating and complicated. I was fortunate enough to receive social security disability about April 2018, so I was able to afford to get back to chiropractic, acupuncture, and psychotherapy. I finally got medicaid last June, and began the tedious search for a great neurologist.
The first neurologist belittled me because I take so many medications, and told me she couldn't help because she was not a headache specialist. She literally made me cry at that appointment. So, I went back on the hunt for a headache specialist that takes medicaid. I finally found a mediocre doc in June, and got on the schedule for botox. He ended up being very curt and contrary, so I decided I needed yet another neurologist. I had an appointment in April with her. She seemed more compassionate and understanding, but not really what I was hoping for. She didn't seem to have any suggestions on how to break this cycle, and told me to keep doing what I've been doing.
During all of that time, I applied for my medical marijuana card. It was about a four month process with immense paperwork and a good sum of money involved, but it was so worth it. I'm currently using marijuana to try my best wean off medication. It is proving difficult and will be a very long process, but I feel about 40% better on THC/CBD which is so huge for me! My goal is to get off all of the meds, and to use CBD as a preventative and THC only for breakthrough pain. Dr Diamond of the Diamond Headache Clinic has recently become my new neurologist. What a breath of fresh air! She spent a lot of time listening and talking with us. Right after the appointment, I was admitted to the hospital for two goals: one to get off the medication Fiorcet, and two to break the cycle of the migraine. I'm working on a second posting about my hospital admissions; stay tuned!
I also decided that I was worth dating, my circumstances are far less than ideal, but I am so much more than those circumstances. And, apparently Chris (my boyfriend) thought so too. We've been together for nine months, and it has been so wonderful. He is incredibly positive, compassionate and is such a beacon of hope for me. Hope for a pain-less future. And I hope, one that includes Chris.
I will continue to keep y'all updated on the med weaning, migraine progress, and girlfriend status. ❤
Do you have a chronic illness? How does it effect your life? Do you struggle with the guilt, depression or anxiety? Do you have anyone in your life that help you keep your chin up and keep moving forward?
"Appreciate where you are on a journey. Even if it's not where you want to be. Every season serves a purpose.” - @daretocultivate