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.)

Is My Life Falling Apart?

When you live with chronic pain, lots of things change. You can no longer do the things you used to do or the way you used to. You have to make accommodations in your life. You find yourself saying no when you want to say yes. Some might feel like their life is falling apart.

I thought about this idea of my life falling apart and wondered what is actually falling apart. I really had to think about it. I realized it was things like my plans/dreams for having a baby that are halted (and likely won't be as easy with the pain and needing to be off medications), my everyday plans and social events that get pushed aside because I'm in pain and need to rest, not feeling like I can do my job well (and the unknown of whether the migraine will ultimately take my job from me), gaining weight and not being able to work out like I used to.

I realized that all of these things were about me. It's what I wanted. They were my (selfish) plans. What has not changed and what has not fallen apart is God's faithfulness. He has always been there and will always be here. So how can I say my life is falling apart? It was never my life to begin with.

When the oceans rise and thunders roar,

I will soar with You above the storm.

Father, you are King over the flood,

I will be still and know You are God.

Patience

I wouldn't consider myself a patient person. Instead of calling myself impatient I'd just like to say that I'm proactive and like to get things done. I just don't want to wait around when there can be something done.

For the past 3 days (since I returned to work- coincidence?), the daily migraines have returned. When I left the treatment at Michigan Head Pain and Neurological Institute, my daily pain was at a lower level than when I was admitted and when it did spike it was due to noticeable triggers. I had medication to decrease the pain, and it was controllable. It hasn't been like that the last 3 days. But up until the past few days, I've been on winter break just relaxing. It will be a matter of time to see how I continue to adjust to work and real life and how my pain level is. I have to wait, even though I don't want to. There are some things I can change and some things I cannot. And I'm trying to process what all this means. Trying to be an advocate for myself and change what I can, work on what I can, and accept what I cannot.

It's a very vulnerable position to be in. I've already been through a lot. And now the pain is back? So many things are going through my head that I don't want to be there. Will I have a migraine today? Will I get better? Will I get worse this year and be just where I was before I went to MHNI? What if I find out (the stress from) my job is exacerbating my migraines and I can no longer stay at my job? I thought I was on the road to recovery, and I don't know if I can handle more 'trials', God. What if I get well and then have to go off all the drugs anyway when we want to have a baby? Should I just not have a baby, biologically, because of migraines? I'm only human, and these thoughts are hard to battle.

But here's the truth. I will get better. I've had 3 bad days in a row since being home. These bad days have also fallen during my menstrual cycle (I haven't noticed them worse during this time of the month before, but I can make note and track it). There was no reason to change my preventive medication regimen given that I was improved after returning from Michigan. I will be tracking how I'm doing and then adjustments can be made if needed. But, it's a process, and not a fast one. So I must be patient.

And here's the even bigger truth. There has been no doubt that God has had his hand in this journey all along. It was clear that He was leading us to MHNI. And I want to remain faithful to Him. He is holding me in the palm of his hand. And he has a plan for me. When you think about that, everything else doesn't seem so scary.

I'm not saying this is easy, but...

Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. 

James 1:2-3

*Update: Later after I posted this, I checked the barometric pressure changes for the past 3 days, and it has been fluctuating a lot which could be a factor in my increased migraine pain.

I'm An Advocate

Through this journey of dealing with my migraines, I would say I am a much better advocate than I was before I became sick with chronic daily migraines. I used to go to my doctors appointments, hoping they would have answers, listening to what they had to say, wishing they would cure me. But that didn't happen! Along the way, I have changed into an advocate for my own health. 

I'm in charge. I'm the one with the pain, I know my body best, and I'm the one paying the bills, so I am in charge. I would say, for the most part, I have had excellent care by my healthcare professionals. However, if I don't see results, or you don't listen to me, or you don't treat me with the respect I deserve (hasn't happened yet), or I think you are way off base and I don't understand your treatment, then I fire you and move on.

I'm persistent. Being an advocate means you don't wait around. Sometimes I have to be patient and wait for the drugs to work (or see if they're going to work... I hated this!), but when I needed a response and wasn't getting them, I've learned the best way to get what you need was to show up in the waiting room so you cannot be ignored.

I'm educated. I know so much more about headaches and migraines than I did before, and I have so much more to learn. Knowledge is empowering and makes this disease not so scary.

I ask questions. You can't become educated if you don't ask questions. 

I educate others. I feel it's just as important to educate the general population about migraine and how it affects me. This will help them understand me better, help them interact with me better, and maybe help them someday in the future with a loved one who may have migraines. An important point that I try to add into conversation when someone asks me how I'm doing: migraines are a genetic neurological disease for which there is no cure.

I have no idea why God has chosen that I have been dealing with chronic migraines. And I may not ever know that answer this side of heaven. But one blessing out of this is I have become a better advocate for myself which can generalize to advocating for myself in other areas of my life. Also, I am much better equipped to advocate for family members' health care needs. 

In other news, how are my headaches doing? The past week has been better than I was before. Which means I'm still improving! I'm not waking up with bad headaches. And when my pain is spiking, it is because of noticeable triggers, as opposed to an unknown reason to me. I have medications I can take that will bring the pain down, but I have also laid down and slept twice to eliminate a migraine, which is amazing! This past week I only had to use 3 abortives and the week before I used 6. I felt so good on Christmas day, that Chad and I helped his cousin's wife do chores on her family farm. It was a fun experience for this city girl! We fed and watered the cows, steer, pigs, and chickens.

Wearing Chad's Uncle Jerry's size 15 boots!

Chad's make-shift farm clothes, including moose pajama pants
he received in the guy gift exchange.

Headache Advocacy Petition

From The Alliance for Headache Disorders Advocacy

HELP END THE FEDERAL NEGLECT OF CHRONIC DISABLING HEADACHE DISORDERS. SIGN THE PETITION

Migraine, cluster, and other chronic headache disorders cause tremendous suffering, disability, and economic costs in the US.

Federal research funding agencies, such as the National Institutes of Health, have neglected this burden partly because the Members of Congress with oversight of these agencies are unaware of the huge scope of the problem.

A US congressional hearing has never been devoted to headache disorders. We seek to educate your Members of Congress. But we need your help.

Right now, we ask you to please sign an on-line petition urging congressional hearings to be held on the impact of headache disorders.

Go to: headacheadvocacy.org/petition Please sign as soon as possible. It takes only a minute.

We will deliver the signed petition directly to Congress.

Also, please ask everyone and anyone you know that cares about someone suffering with a disabling headache disorder to sign as well.

Together, we can ensure that our lawmakers in Washington, DC appreciate the urgent need to reduce the enormous burden of headache disorders.

Thank you very much.

Sometimes I Feel Sad

When I started this blog, I committed to myself for it to be positive, or rather, not a place I would complain or always be negative. That's not to say I'm always in a good mood or always have a good attitude. The truth is, sometimes I'm overwhelmed by what this illness does to me. I can become upset by the compromises I have to make. But, at times when I'm emotional and overwhelmed by the pain and the implications of the pain in my life, I appreciate my husband just giving me a hug and saying, "I'm sorry you don't feel well".

The Spoon Theory

From butyoudontlooksick.com

When I was in the hospital for my headache, the recreational therapist lead a class where she presented us with The Spoon Theory. Click on the link to read for yourself. Christine Miserandino developed the spoon theory when a close friend asked her what it is really like to live with her chronic illness. She gathered up spoons and gave them to her friend and told her friend, "you have lupus". She went on to say that a healthy person has an endless supply of spoons. But when you are sick, you need to know how many spoons you have because you have to choose to use them carefully. She asked her friend to list tasks for the day. For each thing (anything that takes extra energy), Christine took a spoon from her friend, showing that she was being robbed of something and running out of 'spoons'. By the time the friend theoretically got to work in her pretend day, she had far less spoons to use during her day. By the time she got home on her pretend day, she had 1 left. One spoon left to be able to make dinner and clean up.

I think this article is a great demonstration to help others without a chronic illness understand what it's like for us. For me, sometimes I wake up with 5 spoons because I already woke up with a bad headache. And I don't have much to work with that day. Other days, I might have many more spoons to work with that day. Not only can activities use spoons (shopping, cooking, cleaning, working), but so can talking to people who are emotionally draining or dealing with a stressful situation. On the other hand, there are things that can give me back spoons. Such as when medication works to make me feel better or activities that give me energy or make me feel better (going to the dog park or swimming).

This article was also good for me because it helped me realize the importance of pacing so that I don't expend all of my 'spoons' at once. I used to just go, go, go no matter what level was pain was at, and I'm realizing that I need to be more intentional and careful about pacing myself for the sake of my health, as it will be better for my pain level. Hopefully I can figure that out!

My Head Pain

Photo by jennaream / BY-NC-SA 2.0

Everybody's head pain is so different. I met people who had pain behind their eye or pain on one side of their neck. I feel my headache in my forehead. When it's really bad, it extends down through my whole head and I feel it at the base of my skull. In addition, I might feel pain in my neck, tightness in my shoulders, soreness in my jaw, and pressure where my sinuses in my face are. I learned through going to MHNI, that jaw pain, stuffed up nose, and pain in the sinuses can be from migraine pain, and that is definitely true in my case. Up until then I thought I had TMJ issues and sinus issues (so much for that $600 mouth guard, huh?). I am now becoming more aware that right before my head pain increases, my nose starts to get stuffed up. Interesting, huh? My headache is a dull ache. When it's not bad, it feels like pressure. When it's bad, it's an intense ache and it feels tight, like someone is squeezing a cloth around the inside of my forehead. When it's really, really bad it feels like that piece of cloth has millions of tiny pins and needles on it.


MHNI had a helpful pain scale, with objective descriptions. Pretty much each time the nurse asked me "what is your head pain level" (the annoying question multiple times a day at the hospital) I had to refer to this scale.

0 = No Pain

1 = Mild Pain

      Low-level pain, which only enters awareness when you think about it.

2 = Moderate Pain

      Pain level that can be ignored at times.

3 = Severe Pain

      Painful all the time but you could do your job.

4 = Very Severe Pain

      Very severe pain that makes thinking difficult but you could perform simple tasks. You could not do your job.

5 = Worse Possible Pain

      Worst pain imaginable; intense and incapacitating. This pain makes you unable to rest, think, or do simple tasks. It is totally controlling.

Before I went in the hospital, my daily pain was at a 3 or 4. Usually it would gradually increase throughout the day so that it was eventually at a 4. It was very hard to do my job at a 4, and I laughed at their description that a 4 means you cannot do your job. I did! But that's not something I wanted to keep up, which is why I ended up hospitalized, seeking an extreme treatment and evaluating what I can change in my life to make coping and living with pain easier. 

I left the hospital with a new baseline headache of 1 and 2. I am on a new preventative regimen to hopefully keep the pain under control as well as abortive medications to take as needed when the pain spikes. Up until this point, I have had no abortive medication that works at all, and not any preventative medication that were significantly effective. I pray that this treatment plan is effective at keeping my pain at a tolerable level so that I can work and function and have a good quality of life. 

For those of you interested, I take .4 mg of methergine 4 times a day, 100 mg of neurontin 2 times a day and 300 mg at night, 10 mg of atarax 3 times a day, and 50 mg of topamax at night as preventative medications. For abortives I have 10 mg of bacolfen, 10 mg of flexeril, and DHE injections. I am only allowed to take the first two abortives 3 times a week, and the DHE 2 times a week. 

I'm not proud of the fact that I'm pushing this many chemicals into my body. I definitely would have liked to of found a treatment that was non-drug based. Believe me, I tried. Right now, this is my reality. My brain is biologically predisposed to migraine and I have a medical condition that makes me non-responsive to traditional treatment for migraine. These drugs are necessary to change my brain chemistry and decrease the pain. I'm praying they work. I'm just thankful God is bigger than migraines, pain, and drugs.

Parallels Between the Head Pain Unit and the Pysch Ward

As I've been hospitalized for my migraine, I've realized there are many parallels between an inpatient head pain unit and an inpatient psychiatric unit. For a year and a half, I had the joy of working at a psychiatric hospital where I used music to address treatment goals such as coping skills, social skills, reality orientation, and leisure skills. It has been a humbling experience on the head pain unit to realize that the same skills I taught my patients are the same skills that I have not been and need to incorporate into my life (mostly talking about coping skills. I'd like to think I'm oriented to reality).

In a Head Pain and Psyc Unit...

Patients go to classes on coping skills

Patients do crafts for distraction

Patients take the same medications  (anti-depressants and anti-seizure among many others are used off-label for migraine)

Patients meet with a treatment team (and the patient often feels differently than what the team recommends)

Patients are drugged and in a fog

Patients' conversations and interactions are very entertaining to outsiders (either due to drugs and spacey-ness side effects or mental illness)

Staff heavily validate patients' feelings and past experiences

Patients do yoga for relaxation

Patients participate in mindfulness class

Staff take patients for walks outside

Patients are excited to get discharged and get back home, yet anxious about leaving the safety and comfort of the treatment program.

I'm getting discharged today!

The plan is to leave for Iowa today and stay with friends, and then continue home on Tuesday.

Please continue to pray for my recovery and health. This journey has just begun.

Update

I realized I haven't done an update on the blog, even though I've sent out an email to most who check the blog for updates. The team is pleased with my progress (as am I), and since I'm from so far away, they planned to keep me over the weekend and discharge me Monday so that the weekend doctor (who was my admitting doc at the outpatient clinic) could monitor and play with the preventative drugs). Typically people who are local follow up within a week at the clinic. If I had been doing that, they likely would have discharged me Friday. I do not plan to return here. My treatment plan and recommendations will be forwarded on to my neurologist in Kansas City for him to follow and monitor me.

They tapered me off of the IV drug DHE and switched me to its oral form, methergine yestesrday. It seems as if the DHE is what was helping me improve during my stay here, because unfortunately my headache has escalated with the timing of it being tapered off. Three abortives (thorazine, lyrica, and toradol) have done nothing to knock it down. I'm up at a 4/5 pain level, which I have not been at during my hospital stay here. I do not know what that means for my discharge tomorrow. It's possible that the methergine pills just haven't had a chance to start working. It's also possible that they don't work as well as the DHE, or at all. So please pray for an effective preventative regimen as I leave here.

I have hope that I will get better.

A New Family

Before I left for Michigan, I asked my friends and family to specifically pray for: 

My heart and attitude to be open and willing to their treatment. I'm very much looking forward to this opportunity. But being hospitalized, sharing a room and a bathroom with a stranger for 7-10 days, Chad staying at a hotel... this doesn't sound fun.

I look at that request and the treatment I am receiving and think that I have such an amazing God who has taken care of me. And not only has he taken care of me, but done so in a way that blows me away. That is more than I could have even asked for. The head pain unit is a special place full of unique individuals all in the same situation. We all have severe, daily head pain that has been unresponsive to treatment. And we have tried everything out there. We are such different people from each other. Yet we get each other. We have an instant bond, and it is unique and amazing. In a way, I wish I wasn't separated geographically from them. And it's weird to think I may never see them again. But they hold a special place in my heart, and I will think about them and pray for them so often.

I got to see the third therapy dog that visits regularly. Meet Cali:

Peaches the Therapy Dog

Meet Peaches, the therapy dog:

Last night was the first night I finally got up and around the unit because my terrible spinal headache was gone. I thought I was going in for a nerve block, but the pain anesthesiologist recommended a blood patch to alleviate my positional headache from the spinal tap. Except that procedure made my back incredibly sore, feeling like I had thrown it out! There's always something.

Last night I ate in the dining room, which all the patients are encouraged to do. I figured Chad and I would sit together, instead of sitting in our room like we have for the past 5 days. I walked in, and all the other patients were sitting together with 2 tables pushed together. One welcomed me with a warm smile and said "oh come here, we have a chair for you!". I didn't realize or expect the patients to be so connected and friendly. I had been such a hermit from the spinal headache. After dinner, there was group with the therapy dog. And it was supposed to be game night, which Chad brought games to. But I had found out that another patient played guitar, but was too shy to play for others. I figured anyone who brings their guitar to a hospital has to be good, right? As in, better than me. So I asked the rec therapist if this patient could bring his guitar to group. He was real reluctant to play for everyone, so I told him I'd open for him with kids songs. Ha. That made him feel comfortable enough, and he didn't even let me play. Probably because he had such a nice guitar he didn't want anyone else touching it. So it turned into a nice evening with sweet Peaches and great music.

Many Things To Be Thankful For

I feel overwhelmed with  gratitude by circumstances and caring individuals in my situation while in the hospital.

I am thankful for...

• Chad being here with me and his care and patience.
• The flexibility that Chad's job provides for him to work from wherever he is, including my hospital room.
• Sick time at my job so that I can be away from work to get the help I need.
• My sister for watching my pup.
• FaceTime to be able to talk to my sister, nieces, and parents.
• Mail to brighten my day!
• All of the friends who have flooded me with messages and support and prayers.
• A friend who called and prayed for me.
• Insurance. I don't even want to know how much this program costs. (Actually I do, but because of insurance, and me being $200 away from my out of pocket max, I will pay  no more than $200... I think.)
• The nice, nice, nice staff here. Did I mention they're nice?
• Back-up meals and food options from the cafeteria food that is getting old, fast.
• The 'kitchen' on the unit with pop and ice cream (and Chad always finds chocolate milk in there).
• Drugs that work to decrease pain and change my brain chemistry.
• My neurologist not being proud and referring me here (so many others are frustrated by their neurologists not telling them about this place, and they had to research and find out about it on their own).
• Prayers from my 4-year old niece, "Dear God, please help Caylyn never feel the way she feels now again. Amen." 

Hospitalized: What's It Like?

So I've had a few questions from friends about what it's like in the hospital, and figured it might be worth giving a detailed post. No, I don't wear a gown that's open in the back, and no I'm not bothered every 2 hours with vitals.


I am at Chelsea Community Hospital in Chelsea, Michigan on their head pain unit, which is the inpatient program of the Michigan Head Pain and Neurological Institute. So I am at a regular hospital, which means regular hospital room, regular hospital bed, regular hospital food, etc. But I wear my normal clothes. I have my own TV in my room with cable, and obviously my computer with internet. The room is 'semi-private', with just a curtain separating me from my roommate. We share a bathroom in our room, which is a decent size with a shower. Currently I do not have a roommate. There are 20 beds on the unit and right now there are 12 on the unit. They're getting 2 admits tonight and 2 are supposed to be discharged tomorrow. For meals, they prepare your food tray and put it outside the dining hall and you are supposed to go get it. I have yet to do that since I haven't felt well enough. Either Chad goes and gets it for me or the nursing staff brings it to me. They want you to get up as much as possible, so you can eat in the dining room, or bring it back to your room.


I am on IV drugs every 8 hours, which they call your protocol. Currently I am hooked up to a constant saline drip to help with my spinal headache from the lumbar puncture. Between the protocol, you can request an abortive drug, up to 3 a day.

Every weekday, they have 'rounds' (which is more like treatment team at my old job at the psychiatric hospital), where you go in and meet with the treatment team. But you mostly talk to Dr. Saper, the attending physician and director of the program. He started this program in 1978, as the first hospital specialty program for headache patients in the world. Also in rounds are the Physician's Assistant is in there, along with the psychologist, anesthesiologist, nurse, and other people that I don't know who they are. On the weekend, the doctor doing rounds comes to your room. During the week, they offer groups throughout the day, around three a day, lead by psychologists, nutritionists, and recreational therapist. Some class titles are Nutrition, Relaxation Techniques, Spiritual Wellness, Living With Pain, Pain and Mood, Coping with Pain, Relationships and Pain, Taking Charge: About Exercise, Care of the Neck, Yoga, and visits with a therapy dog!

Chad is here with me, and it is great having him here. He is staying at an inn on the hospital campus, so he walks through the woods on a trail for 5 minutes to get here. The security is really laid back (or non-existant?), because he can just wander in, go get me my food tray and more water in the unit kitchen.

Let me know if you have any other questions about what I'm doing here. It's a great program, and I am under great care. I'm grateful to be here and know I'm on the road to recovery. 

Laying in bed getting my IV treatment.