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