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!
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):
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
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"
“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”
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.
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.
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, 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!
Sometimes I think I should make another blog just to share all the music I love. Music is my heart and soul and I know I share alot of it here, but it truly means so much to me. It is my way of expressing how I feel from one moment to the next every single day. When I find a new song to love, I always get so excited, and I listen to it over and over until I know the lyrics inside and out. I have been asked so many times what my favorite song, artist, genre is, etc. I have never been able to give one single answer to that question. I have over 3,000 songs on my ipod alone, and that's not including all my music on my computer, my old CDs from my teenage years, etc. I have music that ranges from classical to R&B to Country. I like to think I'm well rounded. But in other words, I love it all. I use music when I am happy, sad, angry, needing a boost of energy, needing to vent, needing to cry, I use it as a tool to help me with anxiety and panic attacks, I use it to help me fall asleep at night when I'm struggling with severe insomnia. Many times my blog posts come to my mind while I am listening to a particular song and I feel inspired to write. Music inspires me. I will get into more about music a little later in this post.
This week was crazy busy. I didn't know if I would physically and mentally survive all that I needed to do. I was praying like crazy that my Heavenly Father would strengthen me. It wasn't easy, and I walked through my tasks in much pain, and literally fell into bed in terrible pain at the end of the day. There were many days this week that I was so exhausted, but for some reason I was unable to sleep. When I don't get sleep, after so many nights, it starts to wear on me mentally. I become extremely emotional, my anxiety skyrockets, my depression returns, and eventually if I do not get a full night sleep, I will fall into a deep depression, have full blown panic attacks, and have a meltdown. But through help from above I was able to be a mother, wife, sister, and friend and help those around me this week. I was able to be there for my Son, take him on a field trip, be there for his preschool graduation, be there for his first baseball practice and help out. I was able to be an Aunt and be there for my nieces and nephews as we celebrated birthdays and I was able to be there to celebrate with them all. I was able to be a sister and be there for my sisters who were in need, but also enjoy being able to just talk with them, which I'm not always able to do when I'm stuck at home in bed. And though dishes are still stacked in the sink (though thank you Karen for helping with that!), dust is accumulating around the house, bathrooms aren't clean, I am grateful that I was able to do all I did. I have to constantly remind myself that I can't do as much as what I used to be able to before I was sick. I have to remember to pace myself, and it can be so frustrating for me. Actually it is beyond frustrating! I have thrown things at walls in frustration because of this illness and shed so many tears. But when I look back to a year ago, I have made giant strides. Last year at this time, I couldn't walk around a grocery store without feeling like I was going to pass out. I was sleeping most of the day, and I was living on pain medication on a constant basis.
I still live with constant pain and nausea everyday, and some days are worse than others. I wonder sometimes if I've just gotten used to it, or is it really starting to get better? I'm using less narcotics, though I still use quite a bit of phenergan (anti-nausea) because my gut has been ripped to shreds by over a year of antibiotics and anti-malaria meds. My joints still stab me on a constant basis and my legs feel swollen at the end the day. My legs ache like crazy each night and I take magnesium supplements and rub magnesium oil into my sore muscles to help them relax and help stop any twitching. I still rely heavily on glutathione supplementation, but since I can't give it through IV (well I can give myself an IV in emergencies), I nebulize it twice a day and it seems to help keep symptoms at bay (flu-like symptoms that would be there on a constant basis if I didn't). Some days I do forget or don't have a chance to do both doses, and I feel the repercussions from it the next few days afterwards. I also still struggle with migraines, but increasing my magnesium supplementation has greatly helped decrease the amount of migraines I have every month.
I had another monthly appointment with my Dr and we decided that the current antibiotic I had been on for Babesia for the past 2 months wasn't working. My anxiety has skyrocketed and I've been having full blown panic attacks at least twice a week, and about 2 more that I've been able to stop with medication each week (so that comes to 4 a week?), my daytime sweating has increased again. These two symptoms are two very big symptoms of Bartonella. So we both agreed that my Bartonella has come back in force and so we have switched antibiotic treatment to work on knocking down the bartonella bacteria. I hope this decreases my anxiety and panic attacks because those are always the worst feeling in the world. If you have ever had a full on panic attack where you feel like your chest has been constricted with a huge band, you can't breathe, everything in the world comes crashing down around you, you get tunnel vision, you feel your limbs going numbs, and you are just praying that you pass out so you can get back to breathing normal, it is literally one of the scariest feelings.
So that is life here, good and bad as always. Or one step forward and one or two steps back, depending on the day. But no matter what, I try my best to look for the blessings in my life, the silver lining and do my best to keep positive as best I can. So here I am again with music. I am LDS and have spent most of my life listening to LDS artists when it comes to spiritual music. But for the past few years I've branched out and found some amazing and beautiful Christian artists that I love. One that I like is Casting Crowns. They have played music in movies like Fireproof, Courageous, and Facing the Giants (all great movies if you haven't seen them). One favorite is called "Praise You in This Storm". I listen to it to remind myself on the hard days that my Savior is always there with me even through the rain and storm:
"Praise You In This Storm"
By Casting Crowns
I was sure by now God You would have reached down And wiped our tears away Stepped in and saved the day But once again, I say "Amen", and it's still raining
As the thunder rolls I barely hear Your whisper through the rain "I'm with you" And as Your mercy falls I raise my hands and praise the God who gives And takes away
[Chorus:] And I'll praise You in this storm And I will lift my hands For You are who You are No matter where I am And every tear I've cried You hold in Your hand You never left my side And though my heart is torn I will praise You in this storm
I remember when I stumbled in the wind You heard my cry to you And you raised me up again My strength is almost gone How can I carry on If I can't find You
But as the thunder rolls I barely hear You whisper through the rain "I'm with you" And as Your mercy falls I raise my hands and praise the God who gives And takes away
[Chorus]
I lift my eyes unto the hills Where does my help come from? My help comes from the Lord The Maker of Heaven and Earth
[Chorus x2]
Another song I love is from the movie Fireproof called "While I'm Waiting". Right now, to me, this song means that I will be faithful while I'm waiting and hoping things continue to improve as I trudge through each day of this illness:
"While I'm Waiting"
By John Waller
I'm waiting, I'm waiting on You Lord And I am hopeful, I'm waiting on You Lord Though it is painful, but patiently I will wait
And I will move ahead bold and confident Taking every step in obedience
While I'm waiting I will serve You While I'm waiting I will worship While I'm waiting I will not faint I'll be running the race even while I wait
I'm waiting, I'm waiting on You Lord And I am peaceful, I'm waiting on You Lord Though it's not easy no, but faithfully I will wait Yes, I will wait
And I will move ahead bold and confident Taking every step in obedience
While I'm waiting I will serve You While I'm waiting I will worship While I'm waiting I will not faint I'll be running the race even while I wait
I will move ahead bold and confident I'll be taking every step in obedience, yeah
While I'm waiting I will serve You While I'm waiting I will worship While I'm waiting I will not faint
And I will serve You while I'm waiting I will worship while I'm waiting I will serve You while I'm waiting I will worship while I'm waiting I will serve You while I'm waiting I will worship while I'm waiting on You Lord
I will serve You while I'm waiting I will worship while I'm waiting I will serve You while I'm waiting I will worship while I'm waiting
Well I could share many more thoughts, and many more songs. But I know this is already long enough for today. Until next time!
