I Will Never, Ever Give Up

Some days are hard. The stress of life, jobs, relationships, pain, and an uncertain future can be enough to make me want to curl up in a ball and cry. These feelings are real. The issues in life are real. My pain is real. 

Sometimes I'm in a bad place that I can't talk myself out of, where I can't find it in myself to be positive. These moments don't usually last longer than a day. I don't know exactly what it is that snaps me out of it... a good night's rest, my pain getting under control, the dopamine in my brain resetting, the hope of a new day, God's grace and His amazing and perfect timing. 

You see, I'm not a quitter. My parent didn't raise me that way. I saw them work through tough times whether they wanted to or not. I saw them stand up and fight for what they needed and for what was right. So I will not give up. I've had to endure things that I did not choose for my life. But I am not defined by it. And I have the strength and hope to keep going. To not give up and to keep fighting for the joy in my life. 

I will never, ever give up. 

My Heart is Exploding

Do you ever feel like your heart might explode?

-a wise husband and consequently security with savings at uncertain times
-a niece replying 'I love you more' when I told her I love her
-a full time job
-the opportunity to love others through my job
-health insurance
-warm drinks providing me comfort
-quiet tea parties in bed with nieces
-'safe places': online migraine community, friends who listen and don't judge
-love from furry pups
-a husband who makes me laugh, a lot

Interesting Facts

Since becoming a chronic migraineur, I have learned many interesting things about migraines. Since I feel there are lots of misconceptions and a need for education about migraines, let me share some facts that I feel you should know. Some general information and some quirky facts.

• Migraine is a genetic, neurological disease for which there is no cure.
• 19% of Americans will experience a migraine attack of some kind sometime this year.
• 4% of Americans become chronic, experiencing at least 4 hours of headache per day for 15 days per month (wow, to think of only being in pain half the time and for only 4 hours a day, although I would still be considered chronic, sounds amazing!).
• 9 out of 10 people who self-diagnose a 'sinus headache' most likely have a migraine. Here's why.
• Botox is FDA approved for the treatment of chronic migraine. (Unfortunately, not an effective treatment for me.)
• One of my migraine symptoms is blurred vision where everything is just a little fuzzy. I spent months going back to my eye doctor convinced I had the wrong eye prescription until my neurologist told me this was part of my migraine.
• I get a weird symptom (not as often since I went to the hospital in Michigan in December) where I feel like my hands are ginormous. Like club hands or monster hands. They feel so fat. And I'll be looking at them and watching them typing on the computer, for example, but I have the feeling like they should not be able to type and fit on the keys. This is such a weird feeling! Turns out it's a legitimate migraine with aura symptom: Alice in Wonderland syndrome.
• Migraine disease increases your risk for stroke.
• Over the counter meds (ibuprofen, tylonel, excedrin migraine) cause rebound headache, so don't take them consistently.

Letting Go

Living in chronic pain has made me incredibly grateful when I have moments that I can do things. And it has made me even more grateful when I can do these things in the rare moments of no/low pain. I do not take for granted:

• Going grocery shopping
• Doing the dishes
• Talking on the phone
• Curling my hair
• Driving myself
• Typing on the computer
• Singing in church
• Exercising at the gym

When I have a migraine, which is much of my life, all of these activities are very hard. Sometimes I cannot do them. So when the pain allows me to experience them, I am so grateful.

Last week in church, I realized during worship that I wasn't distracted. For the first time in weeks or months (I can't remember), I didn't have pain on a Sunday morning and I was able to focus on worshipping God instead of how much pain I was in. I treasured that moment. It was such a gem.

It's so frustrating though when all I want to do is sing and worship God and let go of everything. Let go of the pain. But I can't. I can let go of life's stresses, but not the pain. Does that mean I'm not really letting everything go? You're not supposed to be distracted during worship. Right? I don't have any biblical references to back this, but this is what I think. For some reason that I may not know this side of heaven, this pain is what God has given me. For now. There have been lessons and blessings through the pain. God knows if all I had to do was 'let go' and be pain free, I would be. If I'm in so much pain that I can't forget about it while worshipping God, is that okay? Yes. Because I still see God through my pain.

I don't think it's a coincidence that on the morning that I was able to sing pain-free, we sang this song....

You are here, You are here,

In Your presence I'm made whole.

You are God, You are God,

Of all else I'm letting go.

How's Chad Doing?

People have often asked, "So how's Chad doing?" I don't think anything of it, and usually answer, "he's fine", because he is. He's always fine. Come on, it's Chad. Laid back, even-keeled Chad.

Then I realized that my friends were asking a serious, heavy question. These friends are showing they care and understand on a deeper level than those who just ask me how I'm doing. They know that chronic pain can be a huge stressor on a relationship. They understand that chronic pain changes things. They figure that if I'm not always doing well then it can't be easy on Chad.

I'm sure it's difficult to see someone you love in pain, all the time. It has to be frustrating to see the effects of the pain: me being spacey, not being able to think of words, forgetting things, having a wife at your side that looks pissed off (but is really in pain), missing activities because of the pain. And then there's the way it directly effects him: me being much more irritable when I'm in pain.

Yet through all this, Chad's love hasn't changed. He is patient. He is kind. He is not easily angered. He doesn't hold my irritability against me. He never complains. He supports me. He takes me seriously. It makes me smile when I overhear him in a conversation educating others about my condition and what I've been through.

I wouldn't say that this hasn't effected Chad, because I'm sure it has. I mean, how could it not? But I'm not sure how it has, because his love remains unconditional. I don't have a perfect husband, because those don't exist. But it warms my heart that Chad takes his marriage to me seriously as a reflection of Jesus' unconditional love to the church. I'm so undeserving but so grateful.

Dear Chiropractor #1

(I wanted to focus on the positive, so I wrote a "Dear Chiropractor #2" letter. But I just can't help myself. I need to get this out.)

Dear Chiropractor #1,

I came to you very early-on in my headache/migraine journey. In fact, it was well before I knew they were actually migraines. After my doctor sent me to physical therapy for tension headaches and that didn't work, I came to you. You were confidant and passionate about what you do. You said you were 99.5% (or was it 99.9%?) sure you could make my headaches go away, and asked me to stick with it for a few weeks. Heck, why wouldn't I, because you helped me meet my deductible (by only charging me $50 per visit for the few first visits, and then not making me pay my co-insurance later. I wonder why? Because you knew you were charging too much? Because you knew no one will continue to come to you if they had to pay that additional amount?) Whatever, I appreciated that at the time.

What I did not appreciate was your borderline inappropriate comments. I mean, come on, it's already a vulnerable position to be in when you're adjusting my back in a bear hug position and adjusting my skull or neck by cradling my head in your hands. Incorporating a little more professionalism would be nice. Or maybe you could just benefit from having a filter.

Doc: How tall are you?

Me: 5'10''

Doc: I like tall women.

Doc: You really look like one of my ex-girlfriends. She was hot.

Doc: I was thinking about you the other night in bed.... (and proceeded to talk about treatment).

Doc: Did you eat garlic?

Me: Oh yeah, sorry, I had some black bean soup before I came.

Doc: I can tell. Garlic breath is such a turn on.

Me: *eyes wide in disbelief*

Doc: When I met my wife she had garlic breath and I knew I was going to marry her.

And perhaps the most uncomfortable one...

Doc: Can I ask you a personal question?

Me: Um... I guess.

Doc: Do your headaches go away when you orgasm?

Me: Um...

I'm giving you the benefit of the doubt and saying that you probably just had no awareness how you were coming across. You are a married man with 3 kids, after all.

Now, I must admit that you did provide me with relief. But it wasn't lasting relief. It seemed to bother you that you couldn't 'cure' me. Are you so egotistical that it bothers you when you cannot fix someone? Let me break it to you: you aren't God. No human on this earth is going to cure me. What I didn't know at the time was that I have migraines, for which there is no cure because it is a genetic, neurological disease. Why did I not know they were migraines? Because you said they weren't. And I believed you. I was so uneducated and ignorant. You were convinced they weren't migraines because they are not one-sided and I do not get nauseus. Heck, I went with it and thought the same thing. Now I know you are wrong. There are many other symptoms to migraine. They do not have to be one-sided, and my other symptoms include inability to concentrate, word-finding problems, blurry vision, and intense pain across my forehead. I even sometimes get this weird Alice in Wonderland symptom, where I feel like my hands are huge, like giant hands. These are all true symptoms of migraines. When the pain is bad it goes to the base of my skull and also makes my neck and shoulders tight. I also know it's migraine because of specific triggers that cause the migraine, such as barometric pressure changes, fragrances, florescent lights, and loud noises. 

There's no doubt that you are passionate about what you do. And I do think that you deeply care about helping your patients and about them becoming well. You had been a big part of my journey, so I contacted you to let you know about my upcoming inpatient treatment. Three weeks later you asked me how it went. And you still had the nerve to recommend something else to check out when "your treatments fail you". You wanted me to check out this doctor who does miracle work with hormones. You said you would be "happy to arrange a visit with him so you could be examined". When questioned what expertise he brought to the table concerning hormone work, you didn't have an answer. Just said "get to a point when you aren't cured or have reached a wall, then let's talk". That was the last straw. To recommend this after I told you all that I've been through is arrogant and very invalidating. Did you not get the point that I went to the experts in migraine treatment? That I'm so sick with these things that I had to be hospitalized and treated with IV drugs? And you think my hormones are off and causing this. Ultimately you had to be in control and would not give me the doctor's information. It is very unlikely that his work would cure me. I HAVE MIGRAINES! They're incurable. I'm not saying hormones aren't a part of it, but I have reasons to think they aren't, which you knew about (going off of birth control for 6 months and on a new one later, with no change in my migraines). So no, I will not be 'cured'. Yes, I will probably reach a wall at some point. Because I'm in the 4% of migraine sufferers who get into a chronic cycle and are difficult to treat.

Doc, I think you are very good at what you do. Which is treating soft tissue ailments with Active Release Technique (how did it go when you were invited to treat Sporting KC for a game, by the way?). Your expertise does not lie in treating patients with migraines. Next time, please admit you cannot do it all and refer to a headache specialist. 

Wishing you the best (and that another chronic migraine patient never steps foot in your door),

Caylyn

Dear Chiropractor #2

(I had an idea to write a letter to Physical Therapist #1, Chiropractor #1, and Physical Therapist #2, because this blog is for me, to get my feelings and thoughts out, and I have some things to share with them. Instead, for now, I decided to focus on the positive and write to Chiropractor #2.

Dear Chiropractor #2,

Out of all (14) healthcare professionals I have gone to for my migraine, you are my favorite. This is because, from the beginning, you accepted me how I was, did not judge me, listened, and validated the reality I felt of my chronic pain. When I initially came to you, guarded and emotional about starting a new treatment, you gently shared what you could do to help me from your expertise with headaches. You weren't offended when I requested (demanded?) you share with me what you could do, and said I needed to hear how you would help me before I decided to start treatment. You did not promise it would cure me, and that in itself is so valuable to me. I realize I am probably not the easiest patient to deal with. Most of the times you see me, I'm not doing well. Sometimes it's because of the pain and sometimes it's because of circumstances in my life. Lots of times, both. Either you do a really good job of acting like you unconditionally accept your patients, or you really unconditionally accept them. I believe it's the latter. I have never felt like you were frustrated by me, my questions, my pain, or my emotions. When you say "you're fine!" when I apologize for being.... how I am... I believe you. You listen to me and incorporate that into my treatment with you (i.e. I dislike laying on my stomach). Your adjustments of my neck are clean and you always get it right the first time. I wouldn't trust anyone else with my precious head! Thank you for being my favorite healthcare professional and for everything that makes you my favorite. I am truly grateful that you are part of my journey.

A Very Satisfied Patient,

Caylyn

(Let me know if you want a referral to an amazing chiropractor in Overland Park.)