Migraines... How I Loathe Thee...

         Anyone who suffers from Migraines, can attest to this post. Migraines are a one of a kind experience. People who have never had them, are extremely lucky and some usually think they are just really bad headaches… wrong answer! I’ve been doing a lot of research lately on Migraines, and the best descriptions so far that I have found says “Migraine is a complex neurological disease that affects your central nervous system…Migraine is caused by abnormal brain chemistry…Migraine is a genetic difference, in most cases inherited from one or both of your parents.” (The Migraine Brain, by Carolyn Bernstein, MD and Elaine McArdle). Here’s a statistic for you from this same book “Thirty million people in the United States get migraines. Almost half have never been diagnosed with migraines, and another 25 percent have been misdiagnosed with other ailments.” And yet here is a sad thing, there aren’t many doctors who specialize in migraines, it’s hard to find a doctor who will adequately treat a patient with migraines.

          So, what’s it like to have a migraine? Well, there are many many different answers out there. I will explain my experience, as everyone is different. First of all, there are many different types of headaches, and there are many different types of migraines. I’m only just starting to crack the surface of learning all this information by reading and researching (my main sources right now are migraine.com and the book The Migraine Brain) I’ve had headaches since I was a child, and apparently I have suffered from migraines since I was at least a teenager, but never realized it. I didn’t start to get treated for migraines until 2012, so I’m a newbie in the migraine treatment world. I get daily headaches, which I used to pop Excedrin like candy, and that worked for me for many years. Though there were times I remember I had to lay in my bedroom in the dark for hours not moving because the pain was so bad. I never realized that I was experiencing a migraine. I always thought it was just a bad tension headache. In 2012 I was put on topomax as a preventative migraine medication, and also given imitrex and maxalt as abortive migraine medications. It was night and day when I used these meds during my so called “severe tension headaches”, and the pain would dissipate. That was when I realized I was dealing with migraines. I do have familial history of migraines, so yes it is genetic in my family. But back to what it’s like, typically I have little to no warning (rarely do I have an aura- auras are flashes of light in the eyes, or zigzag lines in the eyes, etc right before the pain begins), though I’m learning that there are some signs that do occur for me, such as watery eyes, increased irritability, my scalp begins to hurt to the touch, I become sensitive to sound and light, etc. When the pain starts, it’s usually one sided. I have excruciating pain behind one eye (like a screw driver is being shoved into my eyeball with each heart beat), pain in the temple (I tell my husband that I’d love to take a drill to my temple to relieve the pain), severe pain in the upper neck on the same side, and sometimes that pain wraps around the side of my head like a spider web from the neck to the eye. On my worst days, I have nerve pain in my face where I feel like an ax is being shoved into my face and moved down in a straight line from just above my eye down to just below my chin. There is extreme light and sound sensitivity, severe nausea (thankfully I do have medication for that as well, and I’ve been able to keep from vomiting), and all I can do is lay in the dark of my bedroom (with an eyemask over my eyes, ice behind my neck) and lay as still as possible because any movement at all (including moving from side to side in bed) causes extreme pain. The worst is when I am woken up by these migraines without warning. I’ve scared my husband half to death out of sleep and had him run to get me ice, and to fish through my prescriptions in the dark to hand me my medication while I writhe in pain at 3 in the morning. I hate those migraines. I hate any migraines. But I do appreciate some sort of warning, so I can take my “cocktail” before things become too excruciating which currently consists of IB prophen, Tylenol, phenergan (anti-nausea), flexeril (muscle relaxant), maxalt (abortive migraine med) or imitrex, and oxycodone (pain med), ice, and I use essential oils on my neck, forhead, and temples. My last resort tends to be morphine (I use it when I have nerve pain, like in my face, or when I’ve had a migraine for more than 3-4 days straight and the meds I’ve tried aren’t working). I hate morphine, I feel like a zombie for 3 days after taking it, but the relief that comes after suffering so long is an incredible sigh of relief and I am finally able to relax and fall asleep for the first time in days. This is all just a summary of my migraine experience, I know I’m forgetting symptoms and treatments. Why am I writing this? Because lately I’ve been averaging 2-3 migraines a week (or one large migraine a week) for the past 2 months. I know I need to speak to my doctor about it and see what can be changed, because this is just unbarable, and my stomach ulcer is coming back from all the meds I'm taking. But I loathe talking to my doctor about yet another problem. I hate how migraines just ruin your life. I have to cancel scheduled events, blow off good friends because I’m sick in bed all the time, and unable to do everyday mom duties and housework. It’s completely debilitating. I wear sunglasses everywhere I go, and I’ve gotten to the point where I’m so tempted to wear them to church on Sundays, because otherwise I can’t go, the lights hurt my eyes. But I feel so embarrassed to wear sunglasses inside places, especially at church. But I hate missing church on Sundays, it’s my day to show my devotion to my Savior Jesus Christ and I miss it so much whenever I have to stay home.

               So for those reading this, I know many of my friends struggle with migraines and can relate to this post. But if not, and you know someone with migraines, understand that it’s not their fault, it’s a neurological disease in their brain. If you see someone wearing sunglasses inside, they may just be sensitive to light, have a migraine, or trying to keep from getting one. If they cancel an outing with you because they say they have a migraine, be understanding rather than judgemental. Also know that if you see me out and about, it’s not always because I’m having a “good day”, most of the time it’s because I’m well medicated and can function. On Sundays I get a lot of “how are you doing?” or “you must be feeling well since you are here today”, and I recognize that people are trying to be loving and show that they care, but to be honest I never know how to answer those questions because truthfully Sundays are the worst, I tend to crash and burn over the weekend while my husband is home to help me, and I literally drag myself up and medicate to get to church. So no, I’m not usually doing well, I’m just thankful to be there. But thank you for asking!

(I’ve added a few humorous pics I’ve found) enjoy!:

Happy Sunday! Until next time…

Derby cars, Falls, and Urgent Care

I have such terrible insomnia most nights, the cocktail of meds I have to take would knock out an elephant (as my husband would say), but I have spurts where It doesn't help me fall asleep and I'm stuck awake most of the night, like tonight! 

I can't help but think about my sweet husband and how kind and loving and how much he cares about me and my well being. After a 5 day migraine this last week (those are the worst!!!), today was the first day I was pain free, hallelujah!  It was going like any regular Saturday at our house, my husband and our little boy were preparing a car for a pine wood derby race tonight at our church. My son was so excited! About an hour before the event, I walked downstairs and slipped on the wooden steps, only to find myself falling the entire way down. I found myself in one piece at the bottom of the stairs (can't say the same for the pp&j sandwhich I was carrying) sitting, my husband had seen the whole ordeal and rushed to my side immediately. I started to cry (though I tried so hard not to), he offered me a chair to sit on, but my backside and arm were hurting so much, I wanted to lay down. So he helped me over to the couch and quickly ran and got ice for my arm that had an immediate goose egg and bruise forming, and for my butt which felt like someone had hit it with a baseball bat. I cried a little more and profusely apologized for ruining the sandwhich and for possibly ruining their night of derby races. 

My husband who spent all day making this awesome car for he and our son, stopped what he was doing and stayed by my side to help me as we made sure all my bones and joints were working, and trying to figure out if I had broken my arm or not. My sweet neighbors took our Son with them to the race so he could still go, and watched him all evening so my husband could stay home with me. 

We decided to head over to an urgent care to get an X-ray of my arm just to be safe because the pain wasnt going away. So he gently helped me into my coat, carried my purse, helped me into the car, being so kind and being careful. He let me lean against him while we waited in the waiting room (sitting is mighty painful on my right side at the moment), and helped distract me with movies on his MP3 player. I got about 5 X-rays of my arm and hip, and thankfully no broken bones. I was so grateful at that moment that he has a good job with good health insurance, just another big way he takes care of me and our son. So we headed home, he helped me into bed with more ice, and sweetly put our son to bed, then came and watched a show with me till he fell asleep. That is my husband, my best friend who would drop whatever he is doing, no matter how important, to help me when I need it. That is always how he has been since we started dating over 12 years ago. I know I could have driven myself and gone alone to get xrays, but I also know I that he would want to come with me, and truthfully I wanted him there for the support I needed, I needed my husband. I still feel bad for ruining the evening, and also hope my son wasn't too disappointed. But I'm so grateful to be married to such a wonderful and caring man. I love him more than words can express. Thank you Honey for being you! 

It's The Little Things That Matter Most

My little family left for the weekend to visit family who are camping in another State. I stayed home because I’m still not well enough to take long drives, camp, or stay days away from home for long. I was looking forward to the quiet weekend alone. We joked that I would “party” while they were gone, it was a joke of course, since I have no energy to do anything more than watch movies, read books, nap, and go walk around a favorite store on a more energetic day. Unfortunately, I caught a cold and it turned into a nasty sinus infection and earaches before they left. So I’ve been feeling even worse than usual, so no “partying” for me. I’ve looked forward to bedtime every night, just counting down the hours till I could take my sleeping medication and go to bed. The most excitement I’ve had was my dentist appointment yesterday where I got to enjoy laughing gas and get my teeth cleaned while watching tv. Then I went home, took a long nap, and then spent the rest of the day watching Gilmore Girls (the current show I’m watching on Netflix). It’s been nice and quiet here at home, and yet it’s been oddly lonely. I find that I miss the noise my little boy makes around the house throughout the day as he watches his favorite shows, plays with his legos and uses his creativity to build the most interesting creations out of his toys, those noises and chatter are comforting to me knowing he is here with me and happy. I find myself thinking “what did I do when I didn’t have a child to take care of and my husband was busy at school during the day?”. I miss my husband coming in and out of the garage at night after work as he continues to work on his long list of things that need to be fixed (the list seems endless and things continue to be added to it all the time). They are camping in an area with family that doesn’t get phone reception, so no calling unless they head into the local town during the day, or my husband gets reception for a brief moment while he is hiking or hunting out in the middle of nowhere. I thought I’d enjoy this weekend to myself, and in some ways I do. But mostly, I find myself watching the clock, counting down the days to when they will arrive home, when I can once again be Mom, and Wife. It’s comforting in many ways, because as of late, I tend to feel useless as I’ve been so sick. I feel that I’m a burden to my family because I can’t contribute the amount of work that I want to, or feel I should. I know this is not true, that in reality, Satan is trying to find ways to break me down, and this is one of them, making me think I am useless. But I realize that I miss the little things like the hugs and kisses I can give my sweet little boy in the mornings before he goes to school, the spontanous hugs, kisses and "I love you mommy" that I get from him (melts me from my head to my toes!), being able to talk to and hug my husband when he gets home from work, and being able to read and pray with my little family before bedtime. I am finding that it’s the little things that matter most. So what if the house looks like a tornado blew through it all the time? So what if I haven’t showered in four days? (gross I know, but for those who suffer from chronic illness, you know how much energy goes into something as small as a shower, and even more energy into washing your hair!). So what if the laundry is piled to the ceiling? So what if there are no clean dishes? When I am overwhelmed at all of those things (which is almost ALWAYS) I remind myself to just breathe. At least my child is fed, happy and playing, we have a nice roof over our heads to keep us warm as the weather gets cold, food on our table each day, and my husband has a solid job that we can rely on financially. But most of all, we have each other, we have family who love and help us so much (I love ALL of my family, all of you! No matter where you live! And it’s a lot of family…I LOVE having a big big family, it truly is the best), we have love for each other, we have the gospel of Jesus Christ in our lives and we have the love of the Lord in our home. So for now, I feel content and that is enough. Life is very difficult, I can’t deny that, but I am grateful. I can’t wait for my little family to come back on Sunday so I can kiss both my boys! (my husband and my son). I am a very blessed woman. 

I have a new favorite movie, it is called "Mom's Night Out", if you haven't seen it, watch it! It is so great! You will laugh, laugh, laugh and laugh some more, and then you will cry. It is a beautiful movie for Moms out there everywhere. I wanted to show you a favorite clip from that movie, one that just made me cry because I could relate to what was said (note: the clip is more understandable if you've seen the movie, but you will still enjoy it even if you haven't):

https://www.youtube.com/watch?v=K_aY2M5hxyw

I have expressed to my husband many times that I feel like the worst mom in the world and how I feel so bad for my son because he has to have me as his mommy who is always sick all the time. I've been reminded a time or two that God didn't make a mistake sending my little boy to me and I am grateful for that. I just continue to hope and pray that I will be the sweet loving Mom that he needs me to be. 

And of course I always love to share my latest favorite music with all of you. Here is a new song from David Archuleta sung especially for the new movie called "Meet the Mormons":

Glorious

Sung by David Archuletta

There are times when you might feel aimless

You can't see the places where you belong

But you will find that there is a purpose

It's been there within you all along and when you're near it

You can almost hear it.

[Chorus:]

It's like a symphony just keep listenin'

And pretty soon you'll start to figure out your part

Everyone plays a piece and there are melodies

In each one of us, oh, it's glorious

[Verse 2:]

You will know how to let it ring out as you discover who you are

Others around you will start to wake up

To the sounds that are in their hearts

It's so amazin', what we're all creatin'

[Chorus:]

It's like a symphony just keep listenin'

And pretty soon you'll start to figure out your part

Everyone plays a piece and there are melodies

In each one of us, oh, it's glorious

[Bridge:]

And as you feel the notes build

You will see

[Chorus:]

It's like a symphony just keep listenin'

And pretty soon you'll start to figure out yo part

Everyone plays a piece and there are melodies

In each one of us, oh, it's glorious

https://www.youtube.com/watch?v=GytW_rgr0RM

Until next time...

Keep Breathing...

               So much has happened over the past few months. The biggest being, my body has now rejected the current treatment I was on for Lyme disease. The treatment I’d been on had been two oral antibiotics, two oral anti-fungals, a lot of natural supplements to fight different forms of Lyme (for example: cyst form), etc. In August, I had an appointment with my Doctor and my health had progressively deteriorated over the past few months. I had my picc line pulled this last March or April. Before then, I was at a point where I was able to walk/jog a mile on my treadmill a few days a week, a HUGE accomplishment. Within a matter of 3 months after going back on oral antibiotics, I had hit what I call “ground zero” (where I was at when I first started treatment 18 months ago). My stomach was ripped to shreds and showing signs of an ulcer among many other problems. I was in constant pain and had to continuously increase my pain medication, I was having increased day sweating, worsening flu-like symptoms, worsening body tremors and muscle contractions, increased migraines, all signs that I was herxing, and the treatment wasn’t working on the bacteria and yeast that was overtaking my body. So at my appointment in August, I was a complete mess. I had severe brain fog and my cognitive function was minimal. My Doctor can hear and tell over the phone if my cognitive function is better or worse than any previous appointments from just talking and asking me questions, but I was able to tell him how severe it was. At this point, I heard the dreaded “I’m not sure what else to try, I’ve tried all I have in my arsenal on you and it’s not working as it should be”. I’ve heard that so many times in the past from other doctors, but it was a huge blow to me to hear it in my Lyme Drs voice. He wasn’t giving up on me, but he was being honest that we had exhausted much of what he had to give. I was devastated to say the least and didn’t know what to do. I was given the option to stay on oral antibiotics (that continued to cause ulcer symptoms) or to try the picc line again. At the time we were talking, I wasn’t able to make decisions right away, so I said to stay with oral. I had no idea how to get a picc put back in when I was in one state and he was in another (he can’t make that type of order across state lines). So I would have to find a doctor here who would be willing to make the order for a picc line placement. Within a day, I had thought more through the idea and with the help of my husband, we decided to go ahead with picc placement and thankfully found a doctor who would do it. It was done before the weekend was out. By Monday I was on one IV antibiotic and one oral antibiotic. But, within that first week, I knew everything was terribly wrong. My body was rejecting all meds, the picc line, and in simple terms, my body was shutting down. I felt so sick, I can’t even describe it. I still wasn’t thinking straight. At that moment, I had help for a few days from family, but they were leaving to go home soon. I didn’t know how I was going to be able to survive by myself with my son who would be starting Kindergarten soon, when I couldn’t get out of bed, and just getting up to use the restroom or get some water was so exhausting and made me feel like I was going to pass out on the floor. So I prayed. But when I was praying and praying to know what I should do, what direction I should go next to try to treat and heal my body, it was so difficult to hear any answers from the Lord. Between pain, exhaustion, being on so many medications, I couldn’t hear or feel the spirit very easily. But through many days of talking with family, researching, and thinking about things, I came to a conclusion that I at least needed to stop all antibiotics, antifungals, and pull the picc line (this was 3 weeks after it was placed). We made another appointment with my doctor (this was the very end of August), and explained how things were going and he concurred with us that we should stop antibiotic treatment for at least a few months and go ahead and pull the picc. We asked him for ideas on alternative treatments, which he gave us, and we left the appointment with ideas to research and I still had a Lyme doctor who I would periodically check in with (but not as often as I did when I was on antibiotics).

               I found an alternative treatment that I felt that I needed to pursue, and I’m currently working on that. I will go into that treatment in another post when I know how things go. It’s a slow go, my body is extremely damaged and I’m having to give it a lot of rest, working to detoxify gently and slowly (if I go too fast, I get knocked flat with herx symptoms and severe pain and migraines), it’s been tough and extremely difficult and painful. But my head is clearer now than it was three weeks ago, I am up a tiny bit more during the day than I was three weeks ago. I’m able to at least get my little boy breakfast, off to school, home from school, lunch for both of us, and on a “good” day I can usually get one or two small house chores done slowly. But I’m having to be very slow, very careful, and listen very closely to my body and what it is telling me. If it’s telling me that it’s too tired, I have to drop everything I wanted to do that day and rest, or I will not be able to function the following day. If my muscles are telling me they are tired, I have to stop right away with whatever I’m doing, or I will pay the rest of the day with severe back pain and spasms that will lead to no sleep that night and a migraine, along with being in bed for at least a day or so. It’s still extremely difficult for me to decipher what my body is telling me. A lot of days, when I’m feeling “ok”, I do a little more than usual, and I never know when my body is going to give me “crash” signals, they come on suddenly, not gradually. It’s very hard to figure out, and so frustrating. But I have more hope than I did last month. My stomach is still very raw, it doesn’t handle much of anything (food, supplements, etc) well at all yet. So I deal with a lot of nausea, severe acid reflux, diarrhea, etc. I’m hungry, but at the same time I’m not. Diet is very difficult. I need to be better about my eating habits, but when I’m so exhausted that I can’t make anything by hand, it’s hard to eat so healthy.

               All in all, the past few months have been horrible to say the least. It has been difficult not only for me, but for my little family. As the saying goes “when Mom isn’t happy, ain’t nobody happy”, well here its “when mom isn’t feeling good, no one’s having a good day”, which has been most days the past few months. Many ask how my family does it. To be honest, it’s not easy, we have our moments (many, many moments of frustration). My husband and I wish many times how we could go back in time to when things were a little easier and things were happier. But, we also know that there are reasons we go through these trials in our lives and we know that they can make us stronger, or break us. We choose to not let them break us. I have many friends who say how they admire my strength, and I can’t help but think “I’m not strong, if only you knew how often I cry, how often I feel hopeless and in despair”, I’m not perfect, far from it. But I do write my feelings and I write about my testimony of my Savior Jesus Christ because writing about it helps strengthen me, it’s therapeutic for me. I have a difficult time talking and opening up that way because I can become so emotional, and I hate crying because I end up with a migraine afterwards. So I write. I always hope that something I write in these posts may help someone else in their own trials.

               I always talk about music, and I’d apologize about that, but I’m not sorry. I LOVE music, it gets me through the toughest of times. I love finding new songs that I can hear the lyrics and feel as if they were written just for me. I will listen to that song over and over and over, never getting tired of it. So when I find a new artist or song that I love, I want to share it with all the world! Recently I found a Christian artist called Kerrie Roberts. She is a beautiful singer and has some soft beautiful music and some really fun “dancing in the kitchen” type music as well. Last night while I was looking for more of her music, I found a few songs that I just feel I can relate to right now. This first song I love because it reminds me of what my sister recently told me. She was visiting, and on a particularly hard day, she came and sat on my bed, gave me a hug (I love hugs from my sis!) and told me to just breathe, and remember all I have to do is to just keep breathing. I remind myself of that almost daily, especially in overwhelming moments when I am losing control of my emotions and feel so much despair, I remember to just breathe. 

"Keep Breathing"

By Kerrie Roberts

"You wait in darkness

For answers that you can't see
You know what you deserve and
You’re wondering why your life is
Not what you thought it should be
When the night breaks, your heart still aches
How can you face the day, you just
Keep breathing, you'll make it
Don't give in, you're not done yet
Sometimes all that you can do is
Keep breathing and believing
Don't let go, just hang on tighter, a little longer
When you feel like you’re dying
Keep breathing
Don't give up
Don't give in
Don’t let go
No you're not done yet
Don't give up
Don't give in
Don't let go
When every moment
Is almost more than you can take
You've got to know some tomorrow
Will bring you a breakthrough
That’s the reason why
You’ve got to get through today
When the night's gone, you will be strong
Keep breathing, you'll make it
Don't give in, you're not done yet
Sometimes all that you can do is
Keep breathing and believing
Don't let go, just hang on tighter, a little longer
With every breath you bring hope
You're letting go of all your doubt
When nothing is easy, you’ve got to keep going
Even when you don't know how
You don't have to know how, no
Keep breathing, you'll make it
Don't give in, you're not done yet
Sometimes all that you can do is
Keep breathing and believing
Don't let go, just hang on tighter, a little longer
Keep breathing, you'll make it
Don't give in, you're not done yet
Sometimes all that you can do is
Keep breathing and believing
Don't let go, just hang on tighter, a little longer
Keep breathing
Don't give up
No you're not done yet
Don't give up
Don't give in
Don't let go
No you're not done yet"

https://www.youtube.com/watch?v=hsN2HTyXVmg

“In Your Sight”

by Kerrie Roberts

“I wish I never really had to fall this far
Could have the wisdom of a broken heart
Without all the pain
And I wish I could find a way to just forget
All the yesterdays that I regret
That I don't want to face
But Lord, you saw these moments
Before I began to breathe
And You see how to use them
And where they're going to lead
And I will rest knowing You are holding me
I believe You will never say goodbye
I close my eyes
Unafraid of what I cannot see
'Cause I am always in Your sight
Sometimes, I never feel like I am good enough
I wonder if I'll ever measure up
But that's not the truth
And I'm through with my emotions always guiding me
They take me places I don't want to be
So far from You
And I've lived in fear of failing
But that's just my pride
And I know it's not about me
'Cause I've given You my life
And I will rest knowing You are holding me
I believe You will never say goodbye
I close my eyes
Unafraid of what I cannot see
'Cause I am always in Your sight”

https://www.youtube.com/watch?v=omWWPAQC7Go

9/11/01 From the Perspective of a 16 Year Old

            Every year leading up to this day, I feel dread, I know it’s going to be an emotional day. A day when I will feel like a bandage has been ripped off on a fresh wound, even 13 years later. On this day, 13 years ago, I had just turned 16 almost 2 weeks before. Life was great, I was enjoying high school, time with friends, being able to date boys, I had just gotten my driver’s license and had my own car, I was busy with work and sports, learning sports medicine, and even more importantly I had enjoyed my first year as a Fire Explorer for the city of Bellevue, WA and loved learning about being a firefighter, interacting with firefighters, going on ride-alongs, and getting a taste of my dream job. I was on top of the world. Then the morning of September 11 arrived. I awoke for early morning Seminary (scripture study class with my church), I was eating breakfast and watching the morning news with my parents when breaking news hit and we watched the WTC North tower burning. It was unclear at that time what had happened. It was not long after, that my Mom and I saw a plane hit the South tower. At that moment I remember my Mom saying “We are under attack!”. I was stunned, my brain didn’t comprehend what she meant. Up until that moment, for the first 16 years of my life, I lived blissfully, in a free country, where the words “war” and “terrorist attack” was something that happened to other people in different countries. When I heard the words “terrorist attack” come out of the mouth of my parents, my world turned upside down. Life as I knew it had changed forever.

I had to tear myself away from the news and drive to Seminary. I remember thinking of all the FDNY firefighters who were running into those buildings as everyone was running out, and I said a huge prayer for them. Seminary was solemn, we were all in shock, still trying to understand what had happened. As soon as class was over, I ran to my car to turn on the radio to find out what was happening and heard that a plane had hit the Pentagon and that the South tower had collapsed. My heart sank even further. Had the people and first responders been able to evacuate? What the hell was going on? Were there going to be more attacks? Was my family and I safe here in Seattle? On my drive to school, reports came in that a plane had crashed in a Pennsylvania field, there were still speculations on what had happened there. By the time I made it to school, I rushed into the nearest room with a TV (the teachers lounge) and watched live as the North tower came down. I couldn’t believe what I was seeing. Emotions were running high, I was feeling so many things by that point: Fear, anger, sadness, helplessness, my heart was crushing as I heard that there were many firefighters still in those towers when they fell. My own Brotherhood, buried and/or killed.

               Throughout the day, no school was done. We just went from class to class and watched the news, watched as everything continued to unfold. I kept seeing replays of the planes hitting the towers, of people jumping out of the towers, and the towers collapsing. I thought about how horrible it must have been for people to be jumping to their death. It was a surreal moment in time. By the time I got home, I just felt numb. I remembered having to work that day at the Mall, I was so mad I had to work. No one was shopping, it was dumb we had to be there.

For days, we watched TV, just glued to it. Watching and hearing about the recovery effort and I was dying at that point that I was only 16 and couldn’t go be a first responder and help search the rubble. I kept thinking “If I were in that situation as a first responder, would I have the courage to run into a building while everyone else was running out?” I was already certain that my dream job was in being a first responder, but it was during those questions, soul searching and the answer I had come to terms with that solidify my decision to pursue my career in Fire/EMS. My Dad, a veteran police officer and who also had extensive training in Post Traumatic Stress debriefings was put on high alert that he could be called up at any moment to go over to NYC to help and council with those involved in the rescue efforts. He had a bag packed in his car for weeks just in case he had to leave at any moment. I remember feeling afraid that he might have to go, and so relieved when he didn’t. But considering I am just like him in almost every way, and at 16 I was dying to go help search the rubble, I know he felt the exact same way. Still, I was grateful he didn’t end up going.

               There are many other events in the weeks, months, and years that followed. I watched my future brother in-law get deployed to Iraq within months after the attacks and war was declared. I watched my best friends have to say goodbye to boyfriends/fiancés as they got deployed, I watched friends get deployed and best friends’ husbands get deployed. Like I said before, life as I knew it had changed forever. I truly learned that Freedom doesn’t come free, that we are all vulnerable, that this type of attack could happen at any moment. But I also watched in the days and weeks that followed, and saw communities come together. Families, friends and neighbors helping each other get through this difficult time, and I saw true Patriotism show throughout the country for the first time in possibly my entire life. For a brief moment, it didn’t matter what political party you were, your beliefs, or religion, we were all united as Americans. It was a bitter sweet time that I never want to forget, and vow to never forget.

To the 343 FDNY brothers lost, you are never forgotten:

https://www.youtube.com/watch?v=EqzSAKV5ASM

https://www.youtube.com/watch?v=BnUfwlDB9yA

A need for upliftment

I had this entire blog post written out about anger and how I was feeling angry tonight, and talking about music that I listen to when I am angry, etc. But as I wrote the post, it just didn't feel right. I'm not perfect, I'm far from it. But it's music, pictures and videos of my Savior Jesus Christ that tend to truly soften my hardened heart and help me get through the difficult emotions I feel at times through this difficult illness. This video is called "Reflections of Christ", a slideshow of photographs taken by Mark Mabry of real life people acting out the life and stories of Jesus Christ. I love paintings of Christ, but something about seeing real life people makes it so much more emotional and real.

https://www.youtube.com/watch?v=oteno81QzzQ

But I thought I'd share a few other paintings and photographs that depict how I truly feel tonight. I realize how much I need my older Brother, my Savior and Redeemer who knows and loves me more than I know myself, and he understands my heartaches and pain.

He truly KNOWS and FEELS our pain and sorrow

He prays with us and for us to our Heavenly Father

He loves each one of us

I hope this post brings comfort to someone reading this as these video/photos did for me tonight. In the meantime remember:

Pain... how do you endure it?

Pain, it's an interesting subject. I could get all scientific and talk about all the studies about pain receptors and the brain, etc. But truly, I just want to talk about how pain just plain sucks. Question for those who deal with it often, how do you endure it? Feel free to leave a comment below with your thoughts and suggestions. Some people seem to handle it better than others, I've seen this as a paramedic, and when I've worked in the ER, some people really do seem to have higher pain tolerance, and some people also seem to have higher tolerance to pain medication as well. Some people have chronic constant pain and no one really knows how that feels unless they stand in that person's shoes, my heart goes out to all of you who deal with it daily for years on end. With Chronic Lyme, I have pain day in and day out, nearly constant. Some days I can go without pain medicine and be ok, and then there are days when I'm on the other end of the spectrum and I'm in bed, I've taken everything in my arsenal of prescriptions and I'm still writhing in bed. The hardest part for me is judging "is this going to get worse today?" "do I need to take something stronger for this now? or should I wait?" sometimes, like tonight, if I wait too long, I pay for it for a few hours while I wait for pain medicine to work to bring the pain level down to what I would describe as "bearable". A year ago, I think my "bearable" pain would have been unbearable for me. I feel as if because I've had it constantly for over a year during treatment, that I've become somewhat accustomed to it. Still, it doesn't make it anymore pleasant! I also have days when I seem stronger mentally and emotionally than on other days. Today is not one of those days for me. On my weaker days, when I'm in alot of pain, that is when I am constantly moving around in bed ;because it hurts everywhere, and I can't focus on a movie or a book (usually I can try to watch a show to distract myself), I'm putting ice everywhere and I'm rubbing peppermint essential oils all over to "cool" my muscles and joints down, and drinking peppermint tea (or a calming tea for anxiety) to help calm my stomach and my nausea as I wait for my phenergan and oxycodone or morphine to work. My eyes constantly tear up, or I cry to my husband and wonder when this will end. Most times of severe pain, I turn to my music (as I've discussed many times in the past on this blog about how much I love music and how important it is to me). I do know that there have been studies on music and the brain, and music helping with pain. I won't get into all those long scientific studies either right now. I have different songs that take me to different memories of my life. Have you ever felt the need to get away in your mind for just a moment to someplace safe, someplace that gives you the most comfort? Well I have one place, and a song that I hear that takes me there when I close my eyes and listen. I have to explain some background on this place. I grew up in Western Washington and the beaches there are cold, cloudy, wet, windy, and the water is ice. I bet most of you are reading that and going "Yuck! why would you want to go to a beach like that?" But I love the beach on the Washington coast, it brings pure JOY to me whenever I am there, and it's truly healing to my soul, it is HOME. I love going back whenever I can, which isn't too often these days. When I was a teenager, we spent each summer with very good family friends (their beautiful daughter married my brother :), at their beach house on a quaint little beach town in Washington. I have nothing but the BEST memories of that place. My parents and my brother and sister all lived there at one point or another over the years after I left home for college and got married. But I remember as a teenager, I would walk on the sand with my jeans rolled up, letting the water rush over my feet, listening to the waves, smell the salty air, letting the wet and cold wind blow through my hair as I watch the clouds move across the sea. It was so beautiful and peaceful. Sometimes I would drive my parents car up as for as I could facing the ocean at sunset and I would play some of my favorite soothing music while I watched the sun go down, thinking and pondering about life. The song I would listen to and still do that takes me back to that spot is called"The Prayer" (the original that I loved was sung by Charlotte Church and Josh Groban). All I have to do is close my eyes, and I'm back on the beach at sunset, the waves at my feet, wind in my hair, the salt water smell, everything. It is my one haven, a place I can disappear to for a few moments and forget about the pain and agony I am feeling and remember the joy and happiness I've felt and still do feel in my life. It's a beautiful reminder to me to keep holding on, to keep persevering, to be strong and never give up, remembering that God is with me always and that I am never alone.

I hope I can get back to the ocean again soon, I feel like a fish on dry land sometimes where I live, ok, almost everyday where I live! I'm land locked and live in a dry place! To my family who live near the ocean, feel free to send me some sand in the mail anytime! :) I added the lyrics (forgive me if the translation is off), and the youtube video is a beautiful live rendition. You know how most live renditions are a bit off key, not this one! It is gorgeous! Truly talented singers!

"The Prayer"

By Charlotte Church (featuring Josh Groban)

"I pray you'll be our eyes

And watch us where we go

And help us to be wise

In times when we don't know

Let this be our prayer

As we go our way

Lead us to a place

Guide us with your Grace

To a place where we'll be safe

La luce che tu dai

I pray we'll find your light

Nel cuore restera

And hold it in our hearts

A ricordarci che

When stars go out each night

L'eterna stella sei

Nella mia preghiera

Let this be our prayer

Quanta fede c'e

When shadows fill our day

Lead us to a place

Guide us with your grace 

Give us faith so we'll be safe. 

Sogniamo un mondo senza piu violenza 

Un mondo di giustizia e di speranza

Ognuno dia la mano al suo vicino

Simbolo di pace e di fraternita

La forza che ci dai

We ask that life be kind

E'il desiderio che

And watch us from above

Ognuno trovi amore

We hope each soul will find

Intorno e dentro a se

Another soul to love

Let this be our prayer

Let this be our prayer

Just like every child

Just like every child

Needs to find a place,

Guide us with your grace

Give us faith so we'll be safe

E la fede che

Hai acceso in noi

Sento che ci salvera"

So take a listen, close your eyes, and think about your favorite place for a few minutes and enjoy!

https://www.youtube.com/watch?v=QzDOEWoBJNs

Till next time...