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.