A Good Day

Well I didn't sleep last night, but beside that, today has been better and so far I've been able to go without my dose of glutathione. My little boy has been coming into my room in the morning the last few days like old times and i will put a movie on for him and rest. he also likes to play with my ipod and apparently take pictures while Mom is snoozing.

With the help of my sister, I darkened my hair today (been wanting to do it for months) : 

Yay for better days! Lets hope for better sleep too!

Small Step Backward

Slight step backwards today. I woke up tired and groggy as usual (my nighttime meds give me a bit of a hangover till about noon). I didn't spend as much time with my son today like I wanted because I wasn't feeling as well or "quite right" as I'd put it in another way. I did eventually make it out to the dock and laid out in the sun for 20 minutes or so. It was about 70 degrees and a slight breeze, but unfortunalltely my body doesn't handle heat well, never really has since I was a kid. I came back inside feeling worse. I spent the rest of the day combatting "relapse" symptoms, mostly feeling cold on the outside and boiling hot on the inside or vice versa and shaking so much I can barely get food or drink into my mouth without it spilling all over myself. I tend to get really short tempered and I also tend to bow out and hide just so I don't snap at anyone and regret it later. I took a cool bath, tried to drink as much as I could and laid on ice. I like to be cold more than hot (when I get hot, I get nauseated). This is probably all due to the increase in antibiotic and it's about time for another dose of IV glutathione again (oh joy!). It's days like these that I can't help but feel a little discouraged because I want this to be over and i want to go home so badly, I want life to be normal, I want to feel good! Well anyways, hopefully tomorrow will be a better day. On the upside, I was able to talk to my husband on Skype and I was able to talk with my parents on the phone this evening (they are currently serving a mission for our church).

Dream Big

I had a bad day yesterday (though on my gratitude side of yesterday- I am grateful that my back is getting stronger and I'm holding my chiropractic adjustments better over the past few weeks, seems my back muscles are getting stronger in that regard, which also means I've had fewer migraines. I was also able to see my mom and talk with her, also I am grateful she was able to give me my IV glutathione so I didn't have to poke myself this time around, it was a nice break, thank you mom!!! And I'm grateful for my sister and her big bear hugs she gives me pretty much on a daily basis these days, they are much needed right now. I love you sis!). Today was thankfully a much better day. I was able to muster up enough energy to spend some time with my son, rest my body from my traumatic day yesterday, shower (and stay standing in the shower and not fall over- that's a huge deal), put on makeup (which is a total miracle!) and go out with my family this evening for a few hours. My son was a huge helper and always loves to push mommy in the wheelchair, he's 4. I worry about him so much and how this experience of mommy being so sick will affect him, he worries so much, but I continue to pray it will just be a distant memory for him eventually and he will have a healthy mom for the rest of his childhood. Still, my body feels beat up now, even though most of my outing was spent sitting in a car, wheelchair, or those automatic shopping carts at grocery stores (which by the way, those are so cool to ride!) still I seem to come home, lay down and my body feels like it was hit by a semi truck and my body feels like it weighs a thousand pounds and I can't seem to move after lying down. If I can get myself into a bath, I will do that to soothe sore muscles and joints, but otherwise I will lay on ice packs. It's definitely not fun, but I'm grateful for the better day I had today.

On the Lyme and Bartonella front, I've slowly been increasing my dose of my second antibiotic Biacin (my other antibiotic I'm on is minocycline) and so far so good, the side effects seem to be minimal. I still have about 2 more weeks of working up to the full dose. I increase the dose every four days, so it's a been a very slow ride. But apparently my body can't handle fast (as I figured out when I went on two antibiotics at once and ended up in the ER twice in one week), I have to take everything slow or I overload my system and my body reacts severely physically, mentally, and emotionally... so slow and steady is the game in my case. I've been dealing with more gastrointestinal issues like acid reflux which my doc says could be caused by the minocycline (I've been on it for about 3 months now), and I continue to battle my diet and eat better... it's not an easy task, I have a lot of common food sensitivities. Probiotics are helpful and taking something like zantac as well, but I am concerned about how my gut is going to be later on down the road after so much antibiotics and antifungal meds. I've thankfully been taking very little pain meds lately, but have had to increase my anti-nausea medication to help with my gastrointestinal issues, so I can continue to eat and keep myself hydrated (which is also an ongoing battle- hydration). It's certainly an uphill battle, but I at least can say I'm better than I was a few months ago in many respects.

I'm staying at my Sisters house right now, she lives on a lake and my room has a beautiful view. So on my days when I'm in bed, I can see the beautiful blue sky and the lake, the sunsets, and the beautiful bright stars on clear nights. Sometimes I go lay on my sisters bed upstairs and she has a gorgeous view from her room of the lake also. When I'm able to be up and about, I'm able to look out all the windows or go out on the deck (or on the private dock!) and enjoy the beautiful quiet lake, watch bald eagles fly overhead and swoop down to catch fish, listen to birds sing, and watch my little boy play with his cousins outside and enjoy being a little boy and having his own adventures. Nature sure can be healing in its own way. I also love it here because my nieces and nephews love music (as I do) and so everyday there is always music playing around the house and everyone is singing and dancing around while cooking, doing chores or doing homeschool, it's just a happy atmosphere to be in for me right now. I feel so open to just sing loudly with my nieces to music and not feel embarrassed, or play my own music loudly, it's so great! (I know, it probably sounds silly, but it means a lot to me).

While listening to music today I heard a song I hadn't heard in a while. It's called "Dream Big" by Ryan Shupe and the Rubberbands. It's total bluegrass country, and I'm so not a bluegrass country girl, but I fell in love with this song in college (thanks to my roommates who introduced it to me, and I was able to see the band live in college which was fun) and it pretty much became my theme song that got me through hard days of medic school, through my very difficult medic internship, and now once again it seems to fit my life right about now... here's the lyrics, and I have added a video so you are able to hear song.

(I did not make this video, I just chose it because I enjoyed the lyrics and photos):

"When you cry, be sure to dry your eyes,
'Cause better days are sure to come.
And when you smile, be sure to smile wide,
And don't let them know that they have won
And when you walk, walk with pride,
don't show the hurt inside,
Because the pain will soon be gone.

(Chorus)And when you dream, dream big,
As big as the ocean, blue.
'Cause when you dream it might come true
But when you dream, dream big.

And when you laugh, be sure to laugh out loud,
'Cause it will carry all your cares away.
And when you see, see the beauty all around and in yourself,
And it will help you feel okay.
 nd when you pray, pray for strength to help you carry on,
when the troubles come your way.

(Chorus)And when you dream, dream big,
As big as the ocean, blue.
'Cause when you dream it might come true.
But when you dream, dream big.
 
(Dream big.)(Dream big.)

And when you laugh be sure to laugh out loud,
'Cause it will carry all your cares away.
And when you see, see the beauty all around and in yourself,
and it will help you feel okay. 
And when you pray, pray for strength to help to carry on
when the troubles come your way. 

And when you dream, dream big,
As big as the ocean, blue.
'Cause when you dream it might come true.
But when you dream, dream big."


I also found some really great paintings from one of my favorite artists Greg Olsen on Facebook that I thought I'd share for anyone needing a boost in life:

(I actually have this particular painting on my wall at home, it's one of my very favorites because there are many days when I feel like the little girl in the water trying to grasp onto the Saviors hand)

(Thanks Greg for sharing your talent!)

So here's to dreaming big, trying to stay strong, and remembering that we are not alone in our struggles.

Till Next Time... I pray I can keep my chin up.

~Liana

Fighting Lyme in Photos

Well I had to say goodbye to my husband again as he came and visited and left again and I wasn't healthy enough to go home with him. It's frustrating beyond belief, and I don't feel much like writing today. So I figured I'd blog by pictures today showing a little of the ins and outs of trying to fight Lyme Disease:

 

Giving myself IV Glutathione (which helps clean out the liver and makes the Herxheimer die off reaction symptoms less severe)- my frustration in this picture is because my vein isn't happy with me... it's been poked too many times between my lyme treatments and my IVs I had for 3 months of ECT treatments last year. Lets just say that vein is very scarred. I ended up having to poke myself a second time in another arm.

 

Some of the supplements that keep me going each day and fight the die off reaction as the antibiotics kill the bacteria:

 

I'm pretty much a walking pharmacy right now... it's a pathetic sight to see

 

My evening dose of pills (morning is my biggest dose to gulp down)

 

Vitamin powder and d-ribose for shakes and electrolyte powder to keep me hydrated

 

That's all for now, I'm wishing I'd been better at taking more pictures when I was really sick, but you don't think about those sorts of things when lying in an ER ... Even though I feel down today, I can at least tell myself that things could be a whole lot worse, I'm grateful they aren't. So here's to still fighting!

What is Strength?

Lately I've been feeling weak and whimpy. I figure I need to write out my thoughts to help convince myself that I am strong. I hope over time that I can convince my mind that it is true.

Years ago I felt that I was on top of the world, I could do anything I put my mind and body to. In high school I loved firefighting and became a fire explorer in a nearby city (program that is associated with the Boy Scouts of American allowing teenagers to get a feel for what it's like to be a firefighter, or police officer, etc). I loved going to training every monday night and coming home exhausted, sweaty and smelling like smoke after spending the last three hours learning how to search a smoke filled room for a victim while in full turn out gear, SCBA breathing apparatus strapped to my back and face. I would learn how to extricate victims from vehicles using the Jaws of Life and other extrication tools (which by the way are extrememly heavy, especially for a 120 lb teenage girl), but I did it, and I loved every minute of it. I learned how to ventilate roofs of burning buildings with chain saws and other tools. I learned how to properly lift, carry and set up ladders againts buildings. I learned how to repel down the sides of buildings, and spent many nights running up and down 6 flights of stairs for exercise, sometimes in full gear carrying hose on my shoulder. I would go home sweaty and exhausted, but happy. I did this all four years in high school. Eventually I became leutenant of my fire explorer post and then became captain (head of the entire post). I was so proud of myself and loved it. One of my instructors was a paramedic and there were nights when we'd learn how to do CPR, how to bag a patient or help start IVs (on fake practice arms). It was then that I first found my passion for EMS and had a dream that I wanted to be a Paramedic. Fire was great, but Paramedicine was even better, at least in my eyes. Also in high school, I spent my time doing sports such as gymnastics, beating my body to Hell trying to learn acrobatic moves and getting used to pounding my shins into the ground while practicing the Vault or my floor routine. I got used to falling on my back when I couldn't grab the uneven bars in time. I had many injuries that I overcame through the years (some that still plague me today). I spent time in high school doing everything that a boy would love to do, I was a total and complete tomboy.I grew mostly in a household of older brothers and I hated anything that had to do with cooking, sewing, etc. During youth activities at church. while I had to be in the kitchen with other girls learning to cook, I felt so bummed that I couldn't be in the gym with the boys learning to repel off the baasketball hoop. That's just who I was.
I wasn't into fashion, I didn't know how to do my hair or makeup. So my usual daily look was jeans, a sweatshirt and flip flops with my hair in a ponytail. I also loved soccer and had been playing it on a team since I was 6.

I never thought I would have the opportunity to actually become a paramedic. See, where I grew up, King County Medic One near Seattle is one of the best medic programs in the nation and also extremely difficult to get into. You have to be a firefighter full time for at least a few years before you can even try to apply for the program, and that's only if you get accepted. So that's what I thought it was like around the entire country (which by the way, it's not like that everywhere thankfully).
And to tell you the truth,
I was small, not extremely physically strong and didn't think I'd be able to pass a physical fitness test to even become a real firefighter. So being a medic was a dream. Until one day I heard of Brigham Young University-Idaho and their paramedic program. There were some classes I was required to take before hand such as anatomy and physiology, microbiology, pathophysiology, statistics, chemistry and also be a nationaly certified Emergency Medical Technician- Basic (EMT-Basic). So I took an EMT class in Seattle and then headed off to Idaho to apply for the Paramedic program and get my pre-req classes done. It was truly the best day when I recieved my acceptence letter into the Paramedic program, I was going to be able to become what I had dreamt of for years and didn't think was a possibility. I won't go into details of the program right now, as that could be many posts in itself, but I loved every single day of the two years I spent learning to become the best Medic I could possibly be. I was awarded Paramedic of the Year of my class and I was so happy because I'd worked so hard. I knew I was good at what I did. I could stick IV's on the first try, intubate patients (tube down the throat) on the first try, I had a great memory of pharmacology and could easily remember drug doses without having to look it up. Being in the back of an Ambulance felt like home for me. I felt like myself and I I felt at home there. I loved the feeling of being able to help someone in need, in ways that most people cannot. I loved the feeling of having a critical patient and driving lights and sirens quickly down bumpy roads to the hospital, meanwhile being in the back with other co-workers and having to do my own type of acrobatics straddlling the patient while standing, trying not to fall over while sticking an IV in their arm, all while the ambulance bounced up and down and we went around corners. I am a total adrenaline junky. I completely admit that. The program itself was always exhausting because I ate, slept and breathed paramedicine for two years, but I loved it. I loved doing shifts with the local department as a student, and doing clinicals at the hospital multiple days a week. It was wonderful and I was on top of the world, nothing could touch me, I was invinsible and could do anything I wanted. I would push through my fears and just keep going no matter what.

Then came my internship in Las Vegas and though it was a good learning experience, it was also very traumatic and I was emotionally and mentally abused day in and day out by my preceptor/mentor (the person who watches over you and evaluates you as a student while you work). In a way, I lost myself in Las Vegas. I lost the old Liana, the fearless and strong Liana. She was gone and all that was left was a hollow shell of a girl that I hardly recognized when I'd look in the mirror. I was afraid of so many things and I would let fear overcome me and at time it would be paralyzing to me. Ever since then, I have been trying to fight my way back to be that old Liana I once was, but I feel as if I've continually failed over and over again ever since, stumbeling no matter how hard I try. I came back from Vegas and married my high school sweetheart and we went back to Idaho where we both finished our undergraduate degrees, and during that time I became a volunteer firefighter/paramedic with the local fire department. I was able to work with the men and women who had originally taught me in school, that I looked up to greatly. It was amazing to be working side by side with them as a coworker and not just a student. But deep down, I had lost so much confidence in myself, I gave up easily when I was scared and I wasn't the same person anymore. Through the years came more challenges of having a child and being ill both physically and mentally, trying to overcome post traumatic stress disorder (PTSD), postpartum depression after my son was born, and depression, anxiety and at times extreme fatigue that plagued me. I tried my best to hide it and just keep going, though that didn't always work. Eventually I moved and recently had to quit working as a paramedic. My national certification has expired as of a few months ago, though I still have my state certification for another year. But I know that right now I am unable to keep working in EMS and Fire. It breaks my heart to a million pieces just thinking about it because I love it, I literally put so much blood, sweat and tears into my dream, and now I have to let it go because I've been unable to keep up physically and mentally with the job. Also, because of the adrenaline and waking up in the middle of the night and not always getting enough sleep, my adrenals are shot and I suffer from severe adrenal fatigue among many other things that go along with Chronic Lyme Disease and Chronic Fatigue Syndrome. So not working in EMS right now is a good decision for my body and health. I hate it, but it's the truth.

So after painting a picture of my old self, it's hard for me not to feel like a complete whimp and weak because I can't exercise right now, there are days when I can hardly walk, I have many days when I pretty much drop and knock everything over that I touch because I can't get my hand to grasp the object well enough. I am shaky, body tremors, headaches, daily waves of nausea and I have to take very frequent breaks and rest all throughout the day. I can barely walk through one grocery store without being completely exhausted and needing to lay down. I physically sweat through multiple shirts a day sometimes. I am on so many medications right now, even my medic friends would be astonished and possibly think I'm a druggy. I have to drink fluids on a constant basis or I get deydrated very quickly (I'm talking within 1-2 hours), which excacerbates symptoms, or I end up with a migraine. I have to keep my body physically cool, heat exacerbaates my symptoms. So I spend everyday laying on ice packs and having a fan blowing on me to keep cool and to help with nerve pain down my spine. I can't care for my son by myself right now, so in terms of being a mother, I feel like a complete failure. I have to have IV meds twice a week and my veins are getting scarred and it's becoming harder and harder to give myself IV's without infilitrating a vein and having to poke myself multiple times trying to find a new vein to torture. No Matter where I go, I have to make sure that I have 2-3 bottles of fluids to drink both water and something with electrolytes like powerade, protein to eat, medications such as Percoset or Morphine for pain, Phenergan for nausea, Imitrex or Maxsalt for migraine headaches, and my usual large pile of daily natural supplements and vitamins I'm taking. Sometimes I have to be sure I have a pillow to keep me comfortable, an eye mask to cover my eyes when I start getting a migraine, and disposable ice packs that I can just crack and use to cool myself down if needed while out and about away from home where my reusable ice packs are kept. That is my life right now. But I'm writing this for myself to say "I AM STRONG!" I wouldn't wish this illness on my worst enemy. I am strong because I can still function even when I feel like throwing up for half the day (guess that's better than the whole day!). I am strong because I can still smile from time to time even when I'm in excruciating pain on an almost constant basis, day in and day out. I am strong because I can give myself IV's and poke myself with needles and I can bear the pain, and I can do it myself... on myself (that takes total skill and I do feel proud about that, and very greatful for my Paramedic training, it has truly come in handy). I am strong and I am a fighter! I will keep fighting this disease and will try to keep my head held high even if it's physically hard to do sometimes, let alone mentally. I am strong even though I might have to be pushed in a wheelchair on family outings, or take an electric cart around a grocery store so that I don't tire myself too much. I am strong even though I can't do physical exercise right now, let alone barely walking very far. I am strong even though it's difficult for me to take a shower or bath and wash my body (I have to worry about losing my balance and falling over in the shower, and also tend to have to lay down right afterwards to rest. I am strong even when I can't dress myself very well, or I am dizzy and lose my balance on a constant basis. I am strong even if I pass out (which thankfully hasn't happened in about a month). I AM STRONG! I CAN DO THIS! I CAN BEAT THIS DISEASE! I WILL BEAT THIS DISEASE! To all those who may read this that are battling this disease, you are strong too! Keep thinking positively, it's really easy to think all negative (trust me, I struggle with this every day), but if you look at the good side of things, it will make it a little easier to bear the suffering.

 XOXO to all!
~ Liana

Great Description of Lyme Disease

I found this really amazing description of what Lyme Disease feels like, so read along and take the ride with me (momentarily) and hopefully you will feel more empathy towards those you meet with this crippling disease:

"If you've ever spent any time around someone with Lyme Disease, you are probably pretty baffled. How is it that one minute they can be too sick to walk, and the next minute they are running around like a wild person, full of energy? One minute, they need to be carried up the steps, and the next minute, they are bouncing down the steps to answer the door. One day they can make a four-course meal, and the next day, they walk away from the stove until the smoke alarm goes off, reminding them that they were actually in the middle of making dinner!

Migrating symptoms are a hallmark of Lyme Disease. Sometimes I refer to it as the Carousel Disease, because my days are constantly up and down. No one has been able to explain to me what causes these ever-changing symptoms, but it is one of the most frustrating parts of the disease. People who don't understand Lyme Disease assume you are faking your illness. It's very hard for people to understand why I have days when I can actually ride a horse, and other days when I have to be carried from my bed to the bathroom.

You may look at me, and I may not look the slightest bit sick to you. But inside my body, there is so much going on that you can't see! So for those of you who are ready, hop on the carousel of Lyme Disease for a spin with me!

Imagine someone has strapped lead weights on your legs. Now your legs are heavy, achy, and hard to move. Getting around is quite a chore, but you can do it!

Now, imagine your brain is filled with cotton (hard to picture, but bear with me!). The simplest of decisions are now a major struggle for you, and you can't remember what you were saying or thinking. You can no longer answer a simple question like "should I have a snack?" You can no longer figure out simple math questions like 12-5. You constantly forget to eat your snack, and drink the tea you just made. You forget simple words. You haven't the faintest idea of what you did this morning, let alone yesterday!

Now picture someone taking a drill and boring into your hips, causing a deep, slow ache. It hurts when you walk, it hurts when you sit, it hurts when you lay down. Your fingers feel like someone is stabbing them with needles. Your knees feel like someone is banging on them with a hammer.

Mentally, you are very agitated, like someone is scraping their fingers down a chalkboard close to your ears. You head is throbbing, you are tense, and you feel as though you are ready to blow at any moment!

And just as suddenly as you hopped on the carousel, you hop off. The ride is over. Your head stopped throbbing. Your hips are only a dull ache now, not nearly as intense. You can walk easier now, but all that riding on the carousel has left you a little dizzy. Whoever was scraping their fingers down the chalkboard has stopped, and now you're only mildly agitated. You don't feel like there are lead weights on your legs anymore, but you are left with a flu-like ache in your body. You suddenly remember a million things that you were supposed to do. Like a kitten running through the house, you dart around trying to make up for lost time, all the while wondering when the carousel ride is going to start back up. It might be soon. It might not be until tomorrow. You don't know what the ride will be like next time or how long it will last. But for now, you are happy that your quarter ran out, and the rideis over."
 www.Alyson1durland.blogspot.com 

I read this and my jaw dropped, that's me! It amazes me everytime I find someone who can so eloquently describe everything I feel. I hope one day my writing will improve (with my improved brain fog/cotton head).

A Good Day

The past two days have been better days. I am very grateful for that. After what I would call an emotional breakdown, I woke up yesterday in pain and tired, but after medication and a warm bath with aromatherapy, I felt a little better. I wasn't a good mom with my son like I was hoping to be yesterday, but I take each day one at a time hoping that things will get easier. I prayed last night that I would be needed and be able to help someone. Right now I don't feel like I can help anyone, I'm the one who's needed all the help and it can be really hard. God answered my prayer today, I was given an opportunity to help my family even though I am still weak and tired. I also was better and less short tempered with my son tonight and able to have a few minutes of time where I felt happy and willing to talk and listen to him tell me about his day. I cherish those moments with my little boy, especially those moments when I can tell him how much he means to me and he tells me in his sweet little voice that he loves me. I consider all of this to be a great day. I will keep praying to be a better, kinder, more patient mother and for more opportunities to help others because I know that when I am serving God and helping others, I am less likely to focus on my own problems or pain and It helps remind me what is truly important in life. I also know that it will help me heal emotionally, mentally, spiritually and physically. Good night all!