// Thank you.//

I want to say a thank you to all of you who have reached out to me over the past week or so. Whether it was words of comfort, liking of a text post, or some encouragement, I really appreciate it.

I know myself, and I don’t think that I’m through the worst of my grieving just yet.

On Thursday, I’ll head out to camp, and I’m sure that I’ll have some spare moments where I’ll get to thinking. It will be a nice break.

Fr. Rosco was also the camp administrator for three years, albeit when I was VERY young (like, he was there from `88-`90. I was born in `89) so I know that being there will dredge up some memories. I watched camp videos and home movies last week and just kind of let it sink in.

Monday was really tough for me, as well as for most people, but it was the first time that I was able to walk up to the coffin and actually say a final goodbye and give a final kiss goodbye. It’s difficult, but something I knew I needed to do.

I had a lot of people making sure I was okay, and I appreciated that, and it made me value my friends even more.

In light of everything going on though, I’ve really stepped back to evaluate some things in my life. There are so many things that I’ve said “If I had the time, I’d love to…” but the time is now, and if I don’t make the effort to make the time to take care of myself, do mission work, travel, volunteer, or whatever that ellipsis may be followed by, then I’m not living fully.

So I will continue to write about my health, and I think I can expect to write a bit more frequently. It’ll be difficult at camp (I have to be in the main lodge to get the internet), but I’ll make the effort, because I know it’s something I have and will continue to benefit from.

So than you all for your patience, your kind words, your thoughts, and your prayers. I’m not fully back together yet, but I’m working on it. I’m a work in progress and will draw strength from those around me and by living my life the way that Fr. Michael lived his, in Christ and in a way that benefited as many people as possible.

As our Bishop said during the eulogy, Fr. Michael touched “not tens, not hundreds, but thousands of lives” with his humanitarian efforts and his constant outreach. I want to live my life in that way.

Sorry that this post is once again, non-migraine related and reflective and all, but it’s something that I wanted to share with anyone who cares to read it. I appreciate you all and thank you for being there for me <3

// Grief.//

“There really is no catch-all defined way for people to grieve, is there?”

As most of you know, I’ve been dealing with the death of a close family friend. And grief manifests itself in many ways. In my case, it takes a long time to manifest itself. I’m not an overly emotional person; that’s not to say that I’m cold, it’s just that being raised a Priest’s Daughter, I was always taught to be strong for other people, so my emotions tend to take a backseat.

I’ve been sleeping on the couch and have a sore neck. I haven’t cried, save for two random, intense 10-second spurts of crying. They were over nearly as quickly as they started. I keep looking at pictures and seeing the words “Eternal Memory!” or “Blessed Repose” or even “the driver died” but none of it is registering.

I’m not sitting here trying to deny that the accident happened, and I’m certainly not trying to convince myself that when I walk into the Perth Amboy church, Fr. Michael will be there. However, my brain just can’t rectify the information that I’m receiving with everything I know. Nothing is processing. I’ve become numb.

And I’ve been numb since about 8:30 yesterday morning.

Do you ever get a headache because you need to cry, but can’t? It’s not like I can just sit down and make myself cry. I have to feel the pain and the grief of my loss, but I just can’t. And it’s not because I’m sitting here and denying that it happened.

Yes, I know that Fr. Michael is with God and is looking down on everyone he loves and that loves him from up in heaven. I know that he is reaping the rewards of his years working as a priest and as a humanitarian in this world. And that provides comfort.

However, so does grief. I think that experiencing the full grieving process is important, and I haven’t yet been able to do that.

I’ve been talking to my friend Will about this at length. He’s out at the Seminary, so he’s in Johnstown, where the accident was. He knows that our families were very close, and he also knows that I emotionally shut down at the drop of a hat. So he’s been trying to just be there for me, and I appreciate that more than I can express.

Fr. Rosco and my dad were classmates at Seminary for 3 years. Fr. Rosco was in my dad’s wedding. His wife is my Godmother. He baptized me. My dad recommended Fr. Rosco for the position as camp director during the 80s. When my dad was the National ACRY Business Manager, Fr. Rosco was the National ACRY Editor. They worked together. They both organized activities for the NJ Deanery together.

When the choir was out of town, Fr. Rosco would call me up and ask me to cantor. He liked to hear me sing. Whenever I would answer the church line (“Saint Nicholas Rectory, May I help you?”) He never hesitated to say “Rachel! How are you?” My sisters and I all have very similar voices, so it was actually always a big deal that he recognized my voice.

I will miss him with every fiber of my being.

However, part of me still hasn’t accepted that he’s gone. And this is a part of the way that I’ve learned that I grieve.

And that’s okay, because - like Will said - there’s no defined way for people to grieve.

Eventually I’ll be able to cry. But until then, I’m stuck in this kind of limbo where I can’t really feel much of anything at all. I just made myself eat a Nutri-Grain bar because my appetite is completely non-existent.

Please continue to keep Pani Susan and Vlad Rosco and their family in your prayers.

I know this isn’t migraine related, but it’s personal and is just something that I needed to get out in order to process some information. Thanks to all of you who have reached out to me in my time of need. I appreciate the love that you’ve shown me.

“Really. I guess if you’re gonna have faith, you can’t just have it when the miracles happen. You have to have it when they don’t.”

// So I got back the results of my allergy panel.//

And guess who doesn’t have allergies?

That’s right. The girl who has been on prescription allergy medication for her seasonal allergies for as long as she can remember apparently has no allergies.

Now I know that this wouldn’t have tested EVERY single thing that I could be allergic to (e.g. I’m allergic to pineapples. There’s no way around it. I cannot eat fresh pineapple without my mouth being attacked by tiny ninjas who have acid tipped swords. And they’re just swinging them around aaaaaaaaalll over.) but it hopefully eliminated a lot of things.

Tomorrow I’ll be able to get access to what exactly the panel tested and have a clearer picture of what I fully know.

I DO know however, that I AM NOT ALLERGIC TO MY DOG.

Anyone who read my post about going for this test will know that my doctor said that maybe I was allergic to my dog, and then asked if we would get rid of the dog if I were allergic. I told him no.

He also said that if I were allergic to certain things I would have to limit my time outside and possibly have to wear a mask while outside in order to cut down on allergens. But mostly staying indoors, especially at camp.

That’s just not okay. So I’m very glad that it isn’t something I’m going to have to do. Because I’m an outdoorsy person who loves animals. SO LEAVE ME ALONE.

As much as this news delighted me, it just worked to rule a few things out. These sinus issues I’ve been having aren’t as a result of any allergies in my current environment. However, the sinus pressure and irritation is still there.

So next I get a CT scan on my sinus cavities. I have an appointment scheduled for 8:30 Monday Morning (I am just a glutton for punishment…). Hopefully that will bring me some answers. Whether it be a blockage or some other kind of chronic inflammation, hopefully I’ll either be able to rule some things out or start on a better path to resolve my issues.

Because these sinuses just make my life miserable. I know that the pressure contributes to my migraines. I also know that it has to effect my singing in some way. (Blocked up or inflamed sinus cavities = less resonance space = smaller sound) And who knows what else?

So hopefully I’ll get more answers soon. As for now though, we know that I don’t have allergies!

I’ll call that one a victory!

And I’ll throw scantily clad Chris Evans in there just to make some people (myself included) smile a bit.)

// Today has been a good day!//

It’s Easter for me, so I went to Liturgy this morning and got to see lots of people. The Pascha Liturgy is among my favorites, and I always take a video of my father reading the Gospel because it’s in both English and Greek on Pascha. (Some churches do it in other languages too I’m sure). It’s my favorite Gospel reading.

And I got to see friends who were home from school or who came home for services even when they don’t live in Jersey anymore. And Justin & I finally got a picture with our goddaughter, Abby (my niece)

I think it’s a pretty great picture hah.

So far, today has been a good day. I wish I had gotten more sleep last night, but the PLN (Post-Liturgical Nap) that happens on Pascha seems to always be deeper than any other PLN.

We’ve already had Easter “dinner” so it’s getting to be time to settle in for some nappage. And it’s such a nice and beautiful day outside. I’m so glad that today was a good day for me. I started to get a small headache last night, but it went away pretty quickly. Thankfully it didn’t stick around.

Back to migraine-related posting soon!

Christ is Risen! Christos Voskrese! Christos Anesti!

// Day 26 - Pain-Free Pass//

What’s a day that you wish you could have used a pain free pass (either in the future or the past)? How would being pain or worry-free impact that day?

I’m going to use this in the future tense.

I’m going to say that having the guarantee of a pain-free day on the day that I (God willing) get married would be a huge relief.

When my friends Stacey & Nick were married this past October, it was great to see them just getting to enjoy themselves and have a great time. She didn’t worry about anything and was able to enjoy the company of everyone there.

I want that.

I don’t want to have to worry about migraine pain because of stress or food or noise or being overwhelmed. I just want to be able to enjoy the day.

So if it’s in God’s plan for me to get married, I pray that it’s a migraine free day. It would be nice to not even have to worry about the pain possibly coming on, but there’s no way to guarantee it.

What day would you choose to have a pain-free pass?

// Day 14 - Spread the Love//

Thank a few of your fellow health activists for what they have done. Call them out by name or twitter handle. Share your love.

The first person I have to thank is absolutely Emily over at ThatMWord. When I started up this blog, I was really lost and didn’t even know where to start looking for things, people, or information. I can’t even remember who found whom on this site, but I know that Emily is one of the first people (if not the first person) I followed on this blog. She posts great research and is a strong role model for people everywhere who won’t take being discriminated against in the workplace due to their migraines. She’s an advocate, but more than that, I consider her a friend. (We also found out that we have some common friends, even though we live in different states!!) She’s got a great sense of humor, and shares some really great opinions about research. Emily has been a fantastic resource for me over the course of this blog as not only a resource for migraine information, but as someone who I can complain about my migraines with. If you’re not already checking out That M Word, you absolutely should! You can also follow her on Twitter at @emilymword

The next person I’d thank is Michelle (@michellemmmm). She’s outspoken and is frank about her migraines and the way she experiences them. The fact that she’s also gluten-intolerant draws me to her because this is something I think I may be grappling with. Seeing that there’s someone else out there similar to me makes me realize that I can be a functional human being out there in the world.

A third person would be Jamie. We’ve traded messages back and forth, and she’s been someone I can talk about my migraines with. She’s shared experiences with me and her posts inspire me. She shares research and personal tidbits and I absolutely recommend you guys check out her blog.

There are so many others who have done great things, like those who are contributors at Migraine.com or other websites dedicated to Headache Disorders. I just chose to pick three people who I’ve formed somewhat of a personal relationship with. I think that the best thing I’ve gotten out of joining the online migraine community is a support system. I’ve found some great girls who are going through the same things I go through. We can trade war stories and talk about what works for us and what doesn’t.

So thank you ladies, for all of the support, ideas, links, and compassion that I don’t always get in my everyday life.

I hope to widen my circle of online (and real life) migraineur friends in the future! :)

// Who else is awesome?//

Valued Friend #3: Will B.

So first, I have to say that the greatest thing Will brings into my life is laughter. Yes, there are times that I want to smack him upside the head. Yes, there have been times when actually have smacked him upside the head; but in my defense, he almost always deserves it.

Will was the Athletic Director this summer, and was one of the counselors of the oldest boys’ cabin (along with Andy. While K-Rex & I were the counselors of the oldest girls’ cabin), so we hung out a lot. I guess I should also include the information that Will and I used to date. Although it was difficult to get used to at the beginning of the summer, we were able to get over any residual awkwardness very quickly. That’s really fortunate for me, because I consider Will one of my best friends.

How can I describe Will being concerned for me? Well, it’s like Bill, plus more teasing, and being able to see through my “tough girl” act and call me out on it without anyone else knowing. The fact that we both know ASL (though he’s much more fluent than I am) probably helps this situation. Though it irritates other people sometimes. Whoops.

Will was another one of those people who always made sure I got a cup of coffee in the morning. And besides that, he was a good person to vent to and to bounce ideas off of when it came to programming and counseling. Since I wasn’t as familiar with the dynamics of the boys cabins and the counselor interaction and the kinds of issues at each stage, I had a few discussions with Will and relied on a lot of the information he gave me about personality types of the counselors working (especially considering that two of the other male counselors were relatives of his).

When it came to my migraines, next to K-Rex, Will was probably the most supportive and helpful. One day when we were sitting in the office doing work - me with my sunglasses on - he walked out and returned in a few moments with a cup of iced coffee he made me because he “could tell [I] need[ed] it.”

I did tell him that he was giving me a headache though the first two Fridays. After Cabin Clean-Up, we went right to the Olympic Relays, and as AD, that was one of his events and something for him to run. Those first to weeks they started super late and we had to cut out another programming element (which was okay and not a big deal), and had to hold our staff meeting during Lunch. He drove me NUTS with that. The third week though, we somehow finished right on time which led to excessive celebration.

Although I joke about such things, he got me coffee, gave me his sunglasses for awhile the one time I forgot mine, let me sneak 15 minute naps in the back office, he drove my car when we were all going out to the Chinese Buffet over the weekend but I had already taken meds, and various other little things like checking to make sure I was drinking enough water or gatorade. One night he even offered to do rounds for me. I would have taken him up on the offer if I wasn’t sure he would have stayed out past curfew. (He was the only counselor I had to tell to go into their cabin because it was after 1 AM. He told me “I figured that if you came down here, I would go inside, but I was hoping that you wouldn’t make the trek down to 8 at the bottom of the hill from A at the very top”. Needless to say, I sent him inside.)

When we had a problem camper situation, we worked out a solution together and he volunteered to split up patrol sweeps during evening activities with me so I wouldn’t have to do them by myself.

This summer was just more of the same. Two summers ago, I was sick one morning and stayed in bed through breakfast. When I came out of my room, There was a bowl of strawberries on the floor (apparently Father had sprung for a load of fresh strawberries that morning) with a note that he wanted to make sure I got some of them. Last summer when I was super stressed because I was running the Friday Activity and had very little assistance in setting it up and was basically having a meltdown, he literally picked me up, put me in my car, handed me his gatorade and turned the air up at full blast. Chances are there was heat stroke involved (and last summer was really an awful summer for a multitude of reasons).

When I had the horrible migraine day during the third week, Will was the first one to tell me to go back to bed. I told him I would be fine, and then during the meeting I had to walk away because I got super nauseous and knew I wasn’t gonna be able to make it through the whole meeting. However, I just excused myself and tried to leave the meeting in a nonchalant way while Will went over sports. Katherine & Will were the only ones to call me out on it later. They both knew I was sick and prooooobably had something to do with Father sending me to sleep for the afternoon.

After the camping weeks were over, a few of us stuck around for awhile. On the last Sunday we were all around, we were having Vespers because (New Calendar) Transfiguration was on Monday the 6th. I started to get another headache and took my Fiorinal. I then headed over to the staff cabin where we were all watching the Olympics. I fell asleep with my head on Will’s leg, as most of us were napping until Vespers. I was woken up by him carefully trying to not wake me up as he slid a couch cushion under my head where his leg was and covered me up with the blanket he had been using. I slept for a bit longer and then went to Vespers. He was not all that happy with me for waking up to go to Vespers instead of continuing to sleep since I had a headache, but oh well.

Although he lives about 300 miles away from me (he’s in Seminary in Johnstown, PA) he’s conscious of the fact that my migraines happen during the year on a consistent basis. For example, he sent me a text message yesterday morning and when I said something at one point about taking something for my headache and trying to find a place to lie down, he told me to get an ice pack and more rest. When he knows I have a migraine, he’ll check in on me every few hours. He’s done the same thing when I was having kidney stone issues about 2 years ago.

I also give him a hard time about/have finally gotten him to take some proactive action about his shoulder (He dislocated it while in HS [I believe] and subluxes it on a regular basis because the muscles around the shoulder are just too loose. For instance, he once dove into a pool and subluxed. He also did it twice during one of the staff/camper basketball games this summer and was miserably in a sling for about 2 hours. I’m pretty sure he would have buried that sling if it weren’t from the nurse’s station.)

Point I’m trying to make here is that we both give each other a hard time about our injuries/sicknesses, but in the end really just want the other to take care of themselves. But neither of us does it in a way that makes the other person feel babied. More of in a “Will, if you find a way to sublux your shoulder again I’m gonna pop it out the whole way and smack you with it.” or “Rachel, you have a migraine? If I step on your foot or hit you in the kneecap with something hard, will it take the focus off of that pain?” kind of way. We function by giving each other a hard time and mocking each other.

Have I mentioned that we have a weird relationship? Especially for people who used to date? And we have upfront discussions about such things? haha

Okay, that turned into more of a personal thing at the end rather than why he’s such a great person to have around with my migraines, but I think it all ties in. Having that rapport with him makes it easier for him to remind me that I have limits and need to sit back and take a breather every once in awhile. Especially when I’m in a stressful position and don’t need a migraine.

I really do love my friends.

…And thankfully for me, Fr. Stephen, the Camp Director is a preeeeeetty sweet boss to have when you have migraines…

// Time to continue counting my blessings//

Valued Friend #2: Katherine S. (K-Rex)

Now, Katherine is my best friend. For certain. This is the second time we’ve been co-counselors (we were together two years ago), and she’s honestly the person who knows the most about me.

This includes knowing about my migraines.

For starters, she would make a point of checking that I was drinking water and Gatorade throughout the day. I had to do rounds each night at all of the cabins to check with all of the counselors to see how their days went, and then make sure they were in their cabins for curfew. When I would get back in the room at night, she would already have my iPod turned on to my nighttime playlist and had the fan jacked up so the room was cool (-ish. You can only get those rooms so cool with fans)

Although she may not have even realized she was helping me out, these little things really made my life a lot easier.

Something I’m certain she’s not even aware of was how much her just being there helped me out. I knew that I had someone I could rely on. We were on the same page about things, and if we ever had a disagreement or weren’t on the same page, we were able to just talk to each other and work it out. It was fantastic to know that I didn’t have to deal with conflict within between myself and my co-counselor. We both got overwhelmed with our respective jobs (I was the Head Counselor and she was the Program Coordinator, in addition to being counselors in a cabin) but were always able to serve as an outlet for the other to vent and blow off steam.

There were a few times this summer where I tried to wake up in the morning and was just hit by pain. I knew that if I got out of bed at that moment, I would get a horrible headache, and I was always able to rely on K- Rex to ring the bell for me and make sure that our girls got out of the cabin. On the day that I had a horrible migraine, she made sure pictures that things ran smoothly with our girls and with the program in general in my absence.

It was just really great to know that there was always someone I could rely on at every turn.

Besides all of this, she was just amazing to share a cabin with again. We were able to dance around and be silly and I always knew there was someone I could talk to. She kept me grounded and was someone for me to bounce ideas off of. She really made my job a million times easier, which reduced my stress level, which helped prevent my migraines.

K-Rex is my best friend. She watches out for me, and is understanding of when I’m sick and have a migraine. More than being understanding, she makes sure I’m okay.

She’s pretty awesome.

And there are nine million more things that she does for me that I can’t even list because they’re so subtle. She’s just an all around stellar individual who is concerned for her friend. But at the same time that she’s concerned, she never treats me like I’m unable to function or contribute. Yes, there are times when she’ll say, “Rachel, you need to lie down. Now. You do not look well.” but if I say that I’m okay, she’ll usually let me be. When I’m fighting fatigue or am really in bad shape though, she’ll stand her ground and tell me that I need to knock it off and rest.

And I appreciate the sass.

Did I mention she’s awesome? <3

More to come!

// This summer made me really value my friends.//

Valued Friend #1: Billiam G.

…No, his name isn’t really Billiam, but I enjoy calling him that. Also, you have to either call him “Billiam” or “Bill George”. He’s not called just “Bill” that often. Though it does happen hah.

One of my closest friends, Billiam, was the head of kitchen this summer at camp, and I really owe him for watching out for me.

For some people, caffeine is a migraine trigger. In my case, not having a cup of coffee or tea in the morning will guarantee me a headache. And under certain conditions, that can develop into a migraine.

I had a mug that I brought with me that I kept in the kitchen in the main lodge at camp, and each morning, I would make myself a cup of coffee. One day (this was during one of the Greek Weeks, so I was mostly doing office work, program/counselor planning, training prep, and lending a hand with maintenance) when I wasn’t feeling that great, I went back up to the staff cabin to collect a few of my items and take some medication after morning prayers instead of heading right to the main lodge to get my cup of coffee and then meet with Fr. Stephen as we did each morning.

When I got back down to the main lodge, Bill was standing in the wing with my cup, full of coffee. He said “We were starting to run low on coffee, and I was worried you might not get a cup and then might get a migraine. So I poured you a cup. Black, right?”

I could have cried.

It was one of the sweetest things anyone has ever done for me. Bill has Lyme Disease so he’s had his own share of health issues. He also majored in Nutrition and Dietetics in college, so we’ve had conversations about food triggers and what kinds of things I might want to avoid for my migraines and my kidney stones as well. I was just so touched that he was so concerned with me getting a cup of coffee because he didn’t want me to get a migraine.

During the last week of camp (when we actually hadourcampers there and I was being Head Counselor and running things) he came to me and was like, “Listen. There’s gonna be an emergency tomorrow because there was an issue with the Sysco order and there isn’t gonna be any coffee tomorrow.” My jaw nearly hit the floor. I told him not to worry and that I would be able to make myself a cup of tea (or two) and would be okay. I had already had a migraine on Monday of that week, and the after effects of it were still around. So he was super concerned that the lack of caffeine was going to launch me into another migraine attack.

Thankfully, Fr. Stephen went and got coffee from Dunkin’ Donuts for the staff that day because he knew that A) We were all tired and needed coffee and B) If there wasn’t any coffee, the whole staff would probably be useless all day.

Bill did offer to use the Keurig in the Clergy Room up in the staff cabin to make me a cup of coffee if I needed after the Box of Joe from DD ran out, but I was okay with what I had. I really appreciated how much he cared, and that he did everything he could to make sure I was able to prevent a migraine.

More stories about awesome friends who take care of me to come! :)