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.

The Good News and The Bad News

The good news is my cerebral spinal fluid is normal and has no infection. And my pressures were normal. The bad news is, I have a terrible spinal headache whenever I am upright. They gave me a 'binder' to wear, which is like a huge elastic band around my waist, which is supposed to keep the CSF from dropping with gravity. The good news is, this 'binder' sucks in all my fat. I'm supposed to drink caffeine to help my body replenish CSF. The bad news is, one of my drugs makes pop taste like metal and I don't like the taste of coffee.  The good news is, adding hot chocolate and cream to coffee is actually not that bad.

MRI of my spine/neck is still on for this morning. Nerve block is postponed until Monday.

Harpo, the therapy dog came to my room. What a sweet pup. He was a cross between a poodle and a lhasa opso. Wish I had gotten a picture for you guys.

Is This Real Life?!

So I've been at Chelsea Community Hospital in Michigan at their inpatient headache unit for 24 hours. So far I've been pretty busy. I've had 3 IV treatments (zofran, benedryl, and DHE), my nightly meds (topamax and doxepin), and one abortive (I chose toradol, and my other choices are thorazine, flexeril, keppra, skelaxin, and baclofen). I also had a lumbar puncture so they could check my spinal fluid pressures (which were normal) and they will send the fluid to be tested for infection. I've met with the team (Dr. Saper is such a nice guy, and my meeting with them seemed more like a pitch for music therapy (which he seemed interested in hiring) than discussing my treatment goals. And he knows my neurologist at home... "Any friend of Charles is a friend of mine."), met with the physicians assistant at length, the anesthesiologist, and psychologist. Phew!

Tomorrow, I will have an MRI of my neck because they want to see the spine, and then they will do a nerve block.

I've been pleased with their responsiveness to my needs and questions. I ask for something, I get it.

So, how am I doing? Well, it's still pretty early. But, I have responded to the meds. My headache will decrease one pain level after the meds (on a scale of 0-5). This last dose of DHE 2 hours ago was finally a full dose. We'll be working to find some IV drugs that work, and then likely switch them to orals. And they also want me to try as many abortives, since now is the time to do it, and to see what does/doesn't work. Then hopefully I can go home with at least 3 abortives (to take on an as-needed basis when I have a bad headache). At this point, I don't have any successful abortives to use.

All the meds are making me feel.... weird. I think David depicts it pretty well:

 

Got a Bed!

For those not privy to my Facebook status updates, I will be going into the headache hospital today! 

I was feeling nervous about calling between 11-12 to see if they had a bed available for me, because I know other people would be calling at the same time. I was feeling nervous about the race... who would get the bed first?! But I didn't have to call. They called me at 10:48 and said they have a bed for me today! What a blessing. I will be admitted from 4-6.

I have two specific prayer requests (aside from their treatment being successful in significantly reducing my intense daily headaches).

• My insurance has just authorized the first day and will authorize each day after that. Just pray there will be no issues with that and I will get the full treatment I need.
• I will be having a lumbar puncture (spinal tap) to measure spinal pressure and test for infection. I'm not really that excited about this, so I'm not really thinking about it so I won't get freaked out or worried about it. I know I'm with the experts, so I'm just trusting in that.

In the meantime, I'm enjoying the beautiful snowfall...

Perspective

78% of the patients who receive treatment at the inpatient headache unit through MHNI experience a 50% decrease in pain.

There is no cure for migraine. Coming up to the headache clinic, I have expected to get significant relief and support for my intense chronic headaches, but not to be 'fixed' when I leave.

The Big Appointment

I had a full-day today at the Michigan Head Pain and Neurologic Institute. I had blood drawn for extensive lab work, met with the nurse go to over my headache history, had an educational seminar on headaches/migraines (which I felt like I could have taught), had an EEG and an EKG, met with the neurologist, and met with a psychologist.

After the EEG. Unfortunately I had nasty goop in my hair for the rest of the day! I asked the lady to take my picture, and she said she gets that question all the time. I asked her if people do it to put it on their blog, and she said that was a new one! :)

Source: MHNI Staff

Dr. Prestegaard was my neurologist. She was very nice. Anyone who first-thing asks me what I do and genuinely seems interested in music therapy wins me over in my book. She went on to say that they see a large number of special education teachers. Hmm. After my evaluation with her, she diagnosed me with 1. post-viral headache, 2. migraine with aura, and 3. myofacial spasm (something to do with my neck/shoulders having tension). So, nothing really ground-breaking here, but finally someone giving light to the fact that the headache was significantly worse with mono, even though I had headaches before mono. She said it's common for a viral infection to bring out a headache and have a migrainous component.

So, now what? I will be going to their inpatient program to be treated. That means I will be hospitalized for the headache, which I was expecting. They will use intravenous drugs to break the cycle. I think she rattled off DHE, zofran, magnesium, benedryl, and something that started with a T that she said was like ibuprofen. She said how the IV drugs are much more effective at breaking the cycle, and once my headache is under control the drugs will have a better chance to be more effective. With a chronic migraine, my pain has been so high that it hasn't really given the oral medications a chance to do their job well. At the hospital, they will also let me have access to lots of other drugs as abortive drugs to see what is effective and could possibly be used in the future as a preventative meds. I got the impression that they want me to try as many drugs as possible to see what does/doesn't work. Oh my! I will also have a lumbar puncture to measure the cerebral spinal fluid and look for infection.

They instructed me to call tomorrow between 11-12 to see if a bed is available. If it is, then they will contact my insurance, and I can be admitted between 4-6. So I'm praying a bed is available so I can get this process started! In the meantime I'm hanging out with Chad at his 'inn'. It's a nice, funny little place. It feels like a bed and breakfast. There were cookies sitting out, and there is a full kitchen he has access to, along with multiple living areas. I'm glad I don't have to be here by myself while I'm here for treatment, and I'm glad Chad has a nice, cozy place to stay.

I'm going to go wash this goop out of my hair. Still can't believe I haven't done that yet, but I wanted to update you! Then I'll get cozy in the inn and get ready for the predicted 3-5 inches of snow to fall.

Welcome to our room!

Made It To Ann Arbor

After 8 hours from Iowa to Michigan today and 4 hours from Kansas to Iowa yesterday, we have made it to our hotel in Ann Arbor! I am so thankful for our friends in Iowa that opened up their home to us last night! It really helped us a lot in this trip.

I am also thankful for my husband taking me to this appointment in Michigan. I know that this whole journey would be much harder if he weren't by my side. I am grateful that he can bring his work with him and be by my side during my appointments and treatment.

And it wouldn't truly show Chad's character without a picture of him goofing off.

Me: Smile, look nice, so I can have a handsome picture of you for my blog.

This is the picture I got.

We are hanging out in the hotel room. Chad is catching up on work. Now that I'm here, I'm not really nervous. I'm ready for my appointment tomorrow at MHNI. It should be exciting!

Overwhelmed by Support

I am overwhelmed by the thoughtfulness, care, and support by my friends and family. It's humbling to know others care that deeply about my well-being and are praying for me through this journey.

This morning as I was getting gas in the car to get ready for the trip, I saw a bag in the backseat of my car and was very confused because I knew I didn't have a box of wheat thins and Woman's Day magazine. I thought my mom had left it in my car. Upon further inspection, I found more goodies and a card from my sister and her family. I hope to someday be able to repay the immense support she provides me with.

Raw, Last-Minute Apprehensions

As I'm preparing to leave for our trip to Michigan (Iowa tomorrow, Michigan on Monday), I'm overwhelmed by an excited nervousness. But mostly nervousness.


I can't believe I'm doing this. This is a big deal.
I'm not that sick with migraines.
There are people much, much sicker than me (like the girl who had 2 strokes and didn't survive her second one).
What if they don't find anything 'wrong' with me?
What if all they tell me is to change my diet, and I go all the way up there just for that?
What are they going to do to me when I'm up there? Yes an EEG, but.... what else? 
What is involved in a 7-10 day stay at an inpatient headache unit? What sort of treatment? Intravenous drugs? Spinal tap for diagnostic testing? Therapy groups? What will my roommate be like?


This is scary.

But I need it.

Lessons From a Migraineur

Since it's Thanksgiving, today should be the day that I write about what I'm grateful for. No doubt I'm incredibly blessed. But today I have something going on in my head. I'm realizing through this process of having migraines and dealing with migraines I have learned a lot, and that those lessons can help me in dealing with other areas of my life.

For what it's worth, these are the lessons I've learned.

Never give up. As much pain and hurt you have to go through, it's worth the fight. When you feel like your physical and emotional energy tank is empty, God gives you a new day to keep going.
No regrets. Own your decisions. Own your mistakes. Don't look back. Everything has happened for a reason. Believe and know that you did everything you could at the time with the best information you were given at the time, believing it was the best thing for you at the time. There was no way to tell how it would affect the future or if it would be a good or bad choice. So don't look back.
Stand up for what's right and best for you. Doctors may be the medical experts, but they aren't the experts of your body and your pain.
Be nice. Even though you stand up and assert yourself, I feel that others are more responsive when you are nice about it.
You are the one with the pain, so YOU are the one that has to make the decisions. Personally, I'm a very indecisive, fickle person. Add chronic pain to that where my processing is slowed, and I have a hard time making decisions. As much support as I have from others giving me advice, ultimately it is my life and my choice of what to do.
As an advocate for yourself, You are in control. When it comes to your healthcare, you are in complete control. Granted, the doctors have the medical knowledge, and you can do everything you can to learn more and become educated. But you have the control to continue treatment with the healthcare professionals, or to 'fire' them. Out of all of these lessons, this one probably does not generalize as well to other areas of life. Unfortunately, in other areas of your life, when you're unhappy with something/someone you don't always get the luxury of 'firing' them and moving onto something/someone that works better for you.
You can't worry about the unknown. In my personal situation, I haven't known when I will become well. I have always held onto hope that it will happen, just not sure when. God has given me this situation and I have accepted it. Even though it may mean that I do not know what happens in the future. It would have been easy for me to think, "what if it gets worse, what if it gets to *this* point, what if I can't do *this*..." and believe me, I was there for a short, dark time. But I got out, and realized that I can't worry about it. I can't worry about what may or may not happen. I have to keep living in the moment.

Pick Me Up

Yesterday at work God gave me multiple encouraging situations. Isn't it awesome when He does that right when you need it?

I entered a high school classroom, who had actually forgot I was coming so both the students and staff were pleasantly surprised to see me. One student greeted me enthusiastically with, "I am so glad to see you! I love fresh music on a Wednesday!"

Later that day I was leaving an elementary classroom and telling one student to have a happy Thanksgiving. He's a smart little guy and sadly asked, "Why won't I see you next Wednesday?" I told him that we didn't have school on Wednesday for Thanksgiving break. He grabbed my hand and tenderly said, "I will miss you, Miss Caylyn." I almost teared up. I didn't have the heart to tell him I wouldn't be back for the next two Wednesdays after that.

I go to one very large classroom with kids with a wide variety of needs. Consequently I do two groups. The paras' schedules changed plus yesterday was a weird day due to an assembly. So one para was in the second music therapy group when she is normally with kids in the first. When another para found this out, thinking the other's schedule had changed to make it such that she would be in both music therapy groups on a weekly basis, she said disgustingly, "Nuh uh! You don't get to be in both!" I told them it made me happy that they were arguing over spending time with me.

At this same school, we had just finished singing goodbye when one student, who probably has the most oppositional behaviors, looked straight at me and said 'go to McDonald's with me'. I didn't know what was going on. I thought maybe they were going on a trip to McDonald's and he was inviting me so I asked the staff. And the paras said, "He really likes McDonald's so it means he likes you". Ha. So sweet that he wanted me to join him.

I Can't Wait...

• I can't wait until it's been less than 71 days since I had a headache free day.
• I can't wait until I can make dinner and not be a space cadet and put a plastic utensil on a hot burner.
• I can't wait until I have the pain-free energy to care about exercising again.
• I can't wait until I go to my chiropractor for an adjustment and he can see the joy in my face that is really who I am, instead of the end-of-the-day exhaustion/migraine that is my normal.
• I can't wait until I can bring in the groceries without having to ask for help (although receiving help to receive help would be nice, but not because I feel terrible).
• I can't wait until I can attend my church small group without my headache intensifying and being super uncomfortable.
• I can't wait until I can sing and worship God in church without pain. Letting go of that distraction while worshipping is hard.

I'm not looking for a cure, but I am looking for significant relief. I know it will happen. I'm not giving up hope.

Preparing For The Specialists

I have an appointment on Tuesday, November 29 at Michigan Head Pain and Neurological Institute. They have sent me some paperwork to have ready when I come, and I have a bit of information (lab work, doctors notes, MRI) ready for them as well. I've compiled what I have so far in a folder so I'm organized and prepared.

I am to arrive at 7:15 AM the morning of the 29th. And they told me to plan to be there until 5:00 PM. I'm supposed to come in fasting so they can do blood work. There was information sent to me about how they might do an EEG and ECG, and there was also information online about the possibility of a spinal (ha, I first typed spinach) tap to test for additional medical conditions. At this full-day appointment there will be an educational seminar about migraines and I will also meet with a clinical psychologist. The multi-disciplinary team will discuss my case and then give me their findings and recommendations for treatment. The doctor(s) will have the final say that day, however someone from the clinical staff has told me that based on my history that I am appropriate for their inpatient program. The average stay is 7-10 days. Typically, treatment will start the day after the full-day appointment, however they cannot guarantee a bed will be immediately available (I asked, they have 20 beds). My husband is coming with me, so we are prepared to stay in a hotel and wait it out. Either way, Chad will be chilling at a local hotel while I make myself at home at Chelsea Community Hospital. I don't exactly know what will be involved in the inpatient program (click the previous link for some info), other than doing everything they can to get my headache under control and break the cycle. I suppose it will depend on what they find after their evaluation at that full-day appointment.

I'm going into this appointment and treatment cautiously optimistic. I believe that the staff at MHNI are the experts for treating what is wrong with me. I know that I will not leave cured. I know that I will still have headaches, maybe even bad ones. But here is what I hope to gain from going to MHNI:

• A better understanding of the migraine cycle and how it causes pain in my body (and mimics so many other symptoms.... or does it?)
• A better understanding of what the headaches are or are not tied to/caused by (infection, hormones, stress, etc.)
• A significant decrease in the intensity of my daily headache, and/or a decrease in the amount of intense days per month
• Ways to cope with the guilt I feel from missing out on life due to the pain and and feeling like I am not doing enough at work because of the pain
• Something (drug or non-drug) that will help me when I have a bad migraine

I'm grateful for this opportunity and I'm looking forward to it.

Grateful

Since it's November, many are taking the extra time to count their blessings. I see it on my friends' Facebook statuses and it makes me smile.

I just read a blog post that prompted me to realize the depth of how good the care I have received in my migraine treatment. Living with a constant headache for 22 months seems like a long time, but since I have become more involved in reading online about others' journeys, it has become very apparent to me that others are in the same boat as me, and many are worse! I have come across so many who have been through the same things as me, plus more things, and for a much longer period of time. And when I read those peoples' blogs, I close their page and do not return. It's not a matter of living in ignorance, but wanting to have positive, encouraging influences in my life. I know my reality has been that my pain has not gone away, but even though I have not known how to make it go away, I have never given up the hope that I will some day be pain free, even if that means a month from now, 10 years from now, or the day I meet Jesus face to face. And, unfortunately, I have come across some people out there who have seemed to have given up. Those people bring me down, so I choose to not be influenced by them.

Looking back on what I've been through, I truly am grateful for my migraine care. I've been through a lot and to a lot of healthcare professionals. I tried a lot. And when it didn't work, I moved on. It was frustrating, failing something, and feeling like I was losing a small piece of me and my hope. But the truth is, what was really happening was I was being pushed to where I am now. God knew what he was doing all along. I went to a primary care doc that I didn't like, so I moved on and went to a neurologist. And along the way I dabbled in alternative treatments, not lingering when they didn't bring relief. Since then I have found a primary care doc I really like as well as a chiropractor who comes across as the most understanding and non-judgemental healthcare professional I have been to. And now my neurologist has referred me to a specialty headache clinic that treats individuals with refractory headaches like me. Living in pain isn't acceptable, and I don't want to put up with it, so I will do everything I can to get better. God knows I have accepted the chronic pain and changed my attitude on life to live with chronic pain. But sometimes I wonder if all those individuals I read about online had a great doctor like mine, where they would be? If these individuals in so much pain were to visit a headache clinic with a team of experts, would they still feel like giving up and giving in to their pain? Would they still be living in such horrible pain?

I am grateful for the position I am in. And none of it is really because of anything I have done, other than not giving up. I am grateful for my friend who was concerned about my headaches and told me to call her mom who referred me to Dr. Weinstein, my neurologist. I am grateful for my neurologist laying this headache clinic in my lap as opposed to me having to search for a second opinion. I am grateful for insurance. I am grateful for Michigan Head Pain and Neurological Institute for providing care and hope to patients like me. I am grateful for my family understanding that my pain is real and doing everything they can to help me. I am grateful for my husband and the position he is in that he can go with me to my treatment in Michigan. I am grateful for God providing the financial resources to travel to this appointment. I am grateful for caring and understanding co-workers when I need to take off work and be away from my kids. Even through the pain, I have so much to be grateful for.

In Sickness and in Health

Five and a half years ago I married Chad Krizan. It was a remarkable day. We exchanged these vows:

I take you Chad to be my husband. I promise before God to love and respect you, to care for you and to console you, to forgive you and strengthen you, to share with you the sorrows and the joys that lie ahead. I promise to be faithful to you and honest with you. I will look to serve God and seek His direction and guidance for our lives. 

So, I guess we didn't vow to love each other in sickness and in health. Weird. Probably because we meshed a bunch of wedding vows together and had the preacher give his approval. But I think the same principle applies, which is the whole point of me writing this post. When you get married, you are so in love.... well I won't speak for you. When I got married I was so in love that all I thought about was how I wanted to become Chad's wife so I could spend the rest of my life with him happily ever after. Maybe I was young and naive to think that it would be that easy.

Sometimes I think it's harder for the spouse who does not have the chronic illness.  After all, they have to put up with the spouse who is ill and who has changed.  Because of this I always thought the well-known phrase of loving in sickness and in health only applied to the spouse who was caring for the sick spouse. God has definitely blessed me with a husband who loves me no matter how I feel or act with my migraines.

Lately I have been feeling more like I am the one that needs to love in sickness. I'm the one that's sick. Maybe God is telling me that even though I'm sick, that doesn't give me an excuse to act crazy or mean (Caylyn would never do that, would she?). These headaches do change me. And what I'm realizing and trying to do is that even though I feel terrible, I want to intentionally show love instead of letting the mean/crazy headache take over.

Lyric Analysis: Fix You

Music is powerful. It is also an incredibly powerful tool. A tool that I use everyday in my job as a music therapist. When I worked at an inpatient psychiatric hospital, I used music a a non-threatening modality to create an environment for the patients to express their emotions. It was amazing how they would engage in and relate to the music. I didn't even have to do the work! A strategy I would use is called lyric analysis. I would present a song that I believed had some therapeutic value, and I would have some pre-determined questions for the patients to guide discussion. I would also usually have a point I would like to drive home about the song that I wanted the patients to identify with. However, in psyc things don't always go as planned, and that was okay! The patients were always so insightful and wise in what they had to offer, it was exciting to see where things would lead.

Lately, I've been addicted to Javier Colon's recording of "Fix You".


If I were still working in psyc, I would likely bring this song in as a lyric analysis. These are some questions I would present to the group. Since I identify with this song in a way that's personal to my headache journey, I'm going to give my answers as well.


(I wrote the questions one day and answered them another, so it's almost as if this is an accurate lyric analysis.)


What did you try your best at? Finding and searching for answers for the headache. But you know that feeling when you try your best, and it's not good enough? That's how I feel.
If you didn't succeed, does that mean you failed? I don't believe I failed. I'm just not done trying.
Are what you want and what you need in life the same? No, but it would be nice if they both came true.
What do you want? To be pain free
What do you need? To be able to deal with the pain
What have you lost in your life? Relating to the headache: my ability to focus, my ability to smile and not feel like I'm faking it, my ability to run/exercise without a headache coming on, the feeling that it's easy to do things, I have temporarily quit going to our church small group because the extra noise makes my headaches intense, my patience and tolerance has significantly decreased.
What are your "lights" that guide you? (this would sure be an interesting question to ask in a psyc hospital, haha) Many people guide me and give me strength. First of all, I don't know how anyone lives with chronic pain and does not have the perspective of Jesus dying for them and one day going home to live with Him where there will be no pain and suffering. Pillars of strength on this earth are my husband and sister and family and friends. There are many co-workers that are so kind and gracious to me, even though I don't know them well, they still ask how I'm doing. I have found chronic pain blogs and communities online that provide great support and encouragement. All of these things/people give me hope and encouragement.
What does this phrase mean in your life? 
     "But if you never try you'll never know just what you're worth"
I will be going to the headache center in Michigan, which I think is exactly what I need. However, I still second guess myself and feel guilty about how expensive it will be and about how I will miss work and my kids won't get music therapy and how I will miss some other obligations through an organization I am an officer in. But the truth is, I am worth it. My health is worth it. And God has provided us with more than we will ever need. The reality of this as I type right now is so overwhelming. So, I have to try. I have to go even though it'll be scary, even though it will be emotionally exhausting. And by going, it proves to myself that I AM worth it. I need this.

What mistakes did you learn from? I'm not one to look back and regret, but I definitely do have mistakes to learn from. There are so many things I would have done differently had I known differently, or I would have advocated for myself more. But, at the time, I was doing the best I could with the information I had at the time. So, I know I wrote this question, but I'm choosing not to answer it. As it relates to my headache journey, I'm choosing to believe that nothing has been a mistake up until this point. Everything has fallen into place just as it should, so that I am landing in the situation I am right now.

Can someone else "fix" you? No, I do not believe that anyone on this earth can cure any other human on this earth, because only God is the ultimate healer.

In this song, who do you feel is singing to you "I will try to fix you?" All of the doctors and healthcare professionals who have made an attempt to help me. Like I said, I do not believe that they alone can fix or cure me. But I believe that if I allow myself to be vulnerable and have enough hope, then they can do their work and help me. And I believe that I will be well and live in significantly less pain.

Latest Migraine Treatment

Dr. Charles Weinstein

This is my neurologist, Dr. Charles Weinstein (a very old picture of him) from Neurological Consultants of Kansas City. He's a nice guy. Great bedside manner. And I think he knows headaches. I went to him because a friend's mom had a great experience with him and the treatment of her migraines. According to my primary care physician, Dr. Weinstein was treating me with the standard, research-based medical treatment. When one didn't work, we'd try another. Well, I've been going to Dr. Weinstein for a year and I am basically the same, if not worse, than I was a year ago. Today I was prepared to advocate for myself due to the intensity of my pain and say that this is not acceptable. I was prepared to inform him that I am considering a second opinion so I need to know from him what other treatment options he will consider. I was nervous about this even though I don't know why. I'm in charge of my care, but for some reason it took lots of guts and prayer to work up the emotional energy for this appointment. Turns out I didn't need it. God answered my prayers, because Dr. Weinstein brought up on his own how I am not getting better.  Then he said:

Have we talked about going to a headache center? I think it might be a reasonable thing to do.

Dr. Joel Saper

He talked about several headache centers across the US, but unfortunately there are none in the midwest. He eventually recommended the Michigan Headache and Neurological Institute, run by Dr. Joel Saper, who was the first person to establish a dedicated headache treatment center. Dr. Weinstein went on to tell me....

everybody they see is just like you, chronic daily headache, resistant to everything. It's a very comprehensive program. They have an inpatient headache unit. They work very diligently to come up with something that works better for you than what I'm doing. I mean, we've tried this, we've tried that, we've tried various things, we're not making any progress. And I think it would be a good thing to do. I think it would be a place that can offer you something that I can't.


They approach the psychological aspects of chronic pain, the effects of stress on headache and pain, diet, biofeedback. It's not just 'oh here take this drug and keep your calendar', it is a multi-specialty approach to treating this.


It's a very well-oiled machine. They're very efficient.


Dr. Weinstein said he would make the initial referral to MHNI and they would contact me to discuss the program and treatment costs and insurance. I left my neurologist appointment at 11:00 AM and at 3:45 MHNI had already called me. And they were ready to set up my appointment next week! Oh my. I need more time. I had talked to my husband briefly about what the neurologist had said, but gosh, we hadn't even talked about traveling and I needed way more processing time.

What I learned from that phone call was that everyone comes in for a full day appointment/evaluation, with all previous medical records. The doctor(s) will meet with you, do tests, and I will meet with a psychologist. Then by the end of the day they will confirm their findings and tell me their plan of treatment and recommendations, whether that is outpatient or inpatient. And I go from there.

At this point I've decided to give myself a day or two to process all of this and wait for some informational brochures in the mail. We are seriously considering setting up an appointment at the end of November, but we will see what works best for my situation. God's timing is perfect in all of this and I am so grateful.

Migraine

From Free My Brain From the Migraine Pain

Why I'm Like My Students

Don't get me wrong, I love my students. And I have the most respect and compassion for them. So this post, in no way, is written to make fun of them or take their disability lightly.

Through dealing with chronic migraines, I have realized that I share lots of similarities with my students.

• Having to work at social skills. Lots of times I don't feel well and my husband tells me it looks like I'm pissed off. But I'm not. I don't think I do a good job of trying to hide it, because I'm not aware of how my facial expression is coming off. I don't feel mad, I feel like my head hurts real bad. 
• I heard you, but it did not process in my brain. I cannot describe this embarrassing reality to you, but it's a harsh truth that comes with the bad headaches. 
• I need visual supports. I went to a drumming continuing education course, and the instructor was giving a rhythm for us to play. It was somewhat complex, but nothing more than I have done in the past in my musical training. But I Could. Not. Get. It. Seriously. I was watching his hands, and hearing his mouth say the rhythm, and I knew I had the ability, but it was not working. I felt like if I could read the rhythm, and slow it down without everyone else playing, maybe it would work. It was an incredibly frustrating experience. And at that moment, it gave me a tiny glimpse into what emotions my students might feel. I don't know if they ever feel like that. But it made me realize the importance of giving them all the supports they needed (and as a professional, made me realize how important visual and auditory cues are).
• You want life to go how you want it, but sometimes it just can't. Last week I was in a high school classroom for students with cognitive disabilities. We had done some great things through music, attention training, social skills, choice-making. So when a student started singing "He's Got the Whole World..." I placated him (and the staff) and sang it along with him. It might have made his day. But, you see, Miss Caylyn does not know all of the verses to this song. Or at least not all of the verses that another student with autism did. I ended the song, and this other student became anxious and upset because not all of the verses had been sung. So, he continued to sing the last verse himself. Which you know, maybe that's not so bad when I think about it. I could turn that into my last point....
• You gotta do what you gotta do for yourself. That student has a history of needing to be in control and getting upset when things don't go his way. But, he was fine when he sang the last verse himself. Others probably think I'm crazy or don't understand my invisible illness when I need to advocate for my needs. But that's okay. Because that's what I have to do for myself.

If You Want Me To

How Did Ginny Owens get inside my head and put my thoughts to music?

If You Want Me To
The pathway is broken 
And the signs are unclear 
And I don't know the reason why You brought me here 
But just because You love me the way that You do 
I'm gonna walk through the valley 
If You want me to 

Chorus: 
Cause I'm not who I was 
When I took my first step 
And I'm clinging to the promise You're not through with me yet 
so if all of these trials bring me closer to you 
Then I will walk through the fire 
If You want me to 

It may not be the way I would have chosen 
When you lead me through a world that's not my home 
But You never said it would be easy 
You only said I'd never go alone 

So when the whole world turns against me 
And I'm all by myself 
And I can't hear You answer my cries for help 
I'll remember the suffering Your love put You through 
And I will go through the darkness If You want me to 


When I cross over Jordan, I'm gonna sing and I'm gonna shout
Well look into Your eyes, and see You never let me down
So take me on the pathway that leads me home to You
And I will walk through the valley if You want me to
Yes, I will walk through the valley if You want me to