I’m sad that some are too young to remember that ad campaign. 🙂
About a month ago, I had the strangest dream, and I woke up with it lingering for so long that the feeling of it was real to me for several minutes. In my dream, I was no longer sick with these migraines. My body was completely well and healthy. While I laid in bed, with that feeling of normalcy, I daydreamed of all the things I could do. I was immediately going to put my shoes on and go for a run. I was going to get my hair highlighted, because it was no longer falling out from the meds. I could get a JOB!! In the surreal state of wellness, I was whole again, we were going to get pregnant! We were going to host parties again! Play with Blake! No more pain, fatigue, ER visits, side effects (dear God, the side effects!), sitting on the sidelines, smiling when I didn’t mean it, sunglasses, hats, trying to remember my next pill, NO MORE MEDS! As reality crept back in, I realized just how much this illness has affected my life. OUR lives. And I had myself a good cry. But just like everyday, I got up. Because I HATE laying in bed. You can know that if I am still in bed, it is BAD, really bad. Never assume that me being out of bed means I am out of pain. But NEVER assume someone laying in bed is weak! Refusing to lay down may just make me the dumbest person on the planet. 🙂
So many people ask what is happening, because to simply share that I have headaches brings confusion. Everyone gets headaches. And many get migraines, too. In some ways, this is nice, because most can relate to what I’m going through, and in other ways, it’s not so nice, because, I’ve had some of the meanest things said to/about me because they are “just” headaches. I’m “not dying”. “At least it’s not cancer”. “Why so dramatic?” Ouch. I am so very grateful to have my life. I have never, and would never compare myself to another illness or disease. I believe that illness or trials of ANY sort do amazing things to your compassion level. You learn to be very careful not to judge people’s circumstances, as so many of us are carrying are our own sets of baggage through this life. Some people’s trials are easy to see, therefore easy to understand and relate to, but some suffer more silently. We must be so careful not to make our baggage seem more important that someone else’s.
I have always had migraines, since my freshman year of college. It wasn’t out of control then, but I do remember always carrying around Excedrin Migraine like it was candy. The neurologists, MRIs, and meds began then. Things became completely out of control in summer of 2012, as my neck injuries started becoming apparent and ramped up. The disc injury in my neck was probably aggrevating my headaches from summer, until my emergency sugery in December of 2012. My botched procedures in November, 2012 completely ruined my neck muscles, and was akin to having a severe whiplash injury (I lost most of the use of my neck muscles at that point). It took around 9 months after my December surgery to fully regain the use of my neck, and it is still my weakness. You can imagine why that would cause a person with chronic migraines to spiral. However, as my neurologist puts it, a person with a disposition for migraines usually has many triggers (foods, injuries, tension, hormones, allergies, sun, wind, lack of sleep, exercise, alcohol, dehydration, lack of exercise, stress, etc.), so it is nearly impossible to try to nail them all down and manage them. We do our best, but her job is to find ways to alleviate the actual headache and help manage the pain. It’s my job to help manage the triggers. And that, my friends, has become a full-time job. I do not exaggerate.
I don’t get headaches. I have headaches. 24 hours a day, 7 days a week, my head hurts. Since around early 2011, this has been the case. The severity of the headache is all I can manage. I try to help Stu understand where we are by using the same number system that the doctors ask of me, which is to gauge my pain on a scale of 1-10. The best I ever get these days is about a 3, which is really great. I live at about a 5 now (on average), without pain meds. Before the hospital (in March 2014), it was about a 6-7 without pain meds. Before Jefferson’s (the hospital) intervention, I was in the ER very frequently, too. A zero is nearly impossible without the intervention of narcotics. After my neck surgery, the headaches and neck pain were completely unmanageable. I was unable to function without the help of pain meds and muscle relaxers. Even once my neck pain healed and I weaned off the meds, we could not get my headaches to calm down. After over a year of unsuccessful experiments with acupuncture, PT, massage, other meds (blood pressure med, anti epilepsy, anti-depressant-we had already been down SO many other headache avenues), we went back to the pain meds for blessed relief. Thank God for them, but they offered their own set of issues, as does every med I try. The worst, though, is that I eventually am faced with the fact that my body builds up a tolerance and rebound headaches when taking narcotics.
Out of desperation, my neurologist referred me to the Jefferson Headache Clinic in Philadelphia, PA. I spent a week hospitalized there in March of 2014 as a part of their very intensive inpatient program. There, I was taken off all pain meds and put on a litocaine drip to try to end the horrible non-stop headache I was experiencing, while they also experimented with other migraine meds to see how my body/head/heart responded under observation.
They’ve tried me on several of these medications after the hospitalization, now that they know that my heart and body are stable enough to handle them (including a heart anti-arrhythmic, an anti-clotting med, stomach meds, and back on the anti-epileptic, and some anti-psychotics). I’m going to let you have fun imagining what kind of side effects I’ve been dealing with. The hospitalization was absolute torture. Visitors were not allowed to stay overnight, so even if DH had been able, he couldn’t. It was too difficult, with childcare arrangements, distance, and work to figure out more than a couple of visits. The nights were truly the worst as, for some reason, that litocaine caused some really horrible hallucinations. My body just never handled, even the smallest doses, of it very well. It did finally alleviate my headache though, after about 6 days. I’m not positive it was worth the trouble, but at that point I wasn’t exactly going to give up. 🙂 I will say this, though: While I was in the midst of having a week that felt like pure misery, God was there with me. He was holding me. And that Sunday, I decided that the other wards of Jefferson and I were going to have church. We had met for a few educational courses during the week. We had been a sight each day, dragging our IVs (dragging ourslves!) to those classes. The meds were doing crazy things to ALL of us. Some were falling asleep at the table. Once, one poor girl just leaned over and threw up everywhere. We all looked completely stoned. No one could stop peeing, and no one could get their IVs to stop beeping so the noise was just crazy. Ridiculous and hilarious and awful. It’s something you bond over.
(My sweet friend up there with the shower cap had complained that her hair was falling out so fast that she had to wear it-because of a medication we were taking. It’s the same reason I’ve cut my long hair.)
But I’m pretty sure not many knew what to do when I dropped off fliers in hospital rooms saying that on Sunday morning we were meeting in that same room for “church”. The nurses already, honest to goodness, thought I was off my freaking rocker, so this confirmed it for them (did I mention my hallucinations?). We even saw one standing outside the door, eavesdropping. 🙂 What a sweet, sweet time with our precious Comforter it was, though. God will always, always bring beauty from ashes, my friends. He brought us there, that day, as reminders to one another that day that we are not forgotten in our daily hurting. He brought us there so that we could remember that our lives still serve great purpose if we would only remember that we were made to be friends with the one who made us. Otherwise…what, then? God brought to mind that day, the simplicity of our story of why we were made…because God wanted us. Plan A. To be with God in this perfect world. But sin came, which caused death and separation. There must be payment for sin, just payment. Jesus has paid it for all of us, so that, if we accept HIM, upon our death we can see God’s whole plan fulfilled!! We will be restored and WHOLE!! These bodies, these dying, decaying bodies will no longer ail. We, the few headache patients at Jefferson that day, sat and laughed and cried at the fact that this was not how our story would end! That our bodies WOULD, in fact, find healing eventually. And in the meantime, our lives would serve great and awesome purposes! So, even though I hated my time at that awful, awful hospital, I can say with no doubt that every single second was worth it for that one tiny little church service spent in Philly.
We ended that service with this song, if you feel like taking a listen…
My favorite lyrics from it are here:
When life before is only a memory
I wonder why God lets me walk through this place
And though I can’t understand why this happened
I know that I will when I look back someday
And see how you’ve brought beauty from ashes
And made me as gold purified through these flames
I hope you know that it took me a long time to share. It wasn’t until I sat in the same room as these women from Jeff that I realized 1. I’m not alone. 2. This is a real thing, I’m sick. and 3. It’s ok to say so. This illness has stolen so much from me and my family, and dealing with it silently is painful. I don’t want pity though. Please. I don’t want headache remedies. I just think that life is easier when we understand each other. I love knowing about my friends. Love it. But, sometimes I hold back because, in all honesty, I’m scared that people can’t bear my burdens. I don’t want them to. This isn’t fair to him, but sometimes I’m not even sure my perfect (wink) husband can. I hold back because I don’t want to be criticized. I hold back because…who wants to be the friend who always has a headache? It sucks. I’m not who I used to be and it sucks. I hold back because I am scared that if people know how badly I’m hurting, they won’t trust me to do things, they won’t ask me to go places, they wont…give me a baby. I don’t trust anyone with all of the information because I can hardly handle it. How can I expect you to? I share now, openly, what I’m going through so that people know one very, very important thing: God gives me strength to get through every single, painful day in this weak body. His grace is sufficient for me, and for you, and He is working out a beautiful purpose to be glorified in my life through my pain. I know that He has beautiful, wonderful plans for our family, and they will be carried out despite my illness, in fact, they will be all the more awesomely because I will have had nothing to do with them!
So many are struggling with these same issuses and find that this is a fine line to walk. I want to be open about my life without whining about my life, which may be the number one reason that has kept me from fully sharing the details of my illness. Whining must be checked. Negativity must be checked. I promise you that I am doing my best to find that balance between honesty and positivity, and ask you to do the same. It’s done, I find, by focusing outwardly- by not always looking at myself, but by looking at God, at others, and at all the goodness around me. There is so much good. You need only look.