Serving Others

I feel that God has truly helped me these past few days by giving me the strength I've needed in order to serve other loved ones in need. I have come home each night feeling exhausted and sore, and wake up that way too, but it has felt so nice to help someone else for a change. I wish no one had to suffer and need help, but that is all part of mortality, and so is serving and helping others, and also being willing to accept help when you need it, and I know that can be difficult on your pride. though it was taxing, I feel happy. I am grateful my Heavenly Father gave me extra strength this week. I truly thank him for that.

My Sweet Husband

I had this whole "woe is me" post planned out... it's been that kind of day today. But then I saw this new video that was just put out by my Church (The Church of Jesus Christ of Latter-Day Saints), they put these "Mormon Message" videos up every once in a while (if you go back to post #1 on this blog, it's a Mormon message that explains my inspiration for the title of this blog). Anyways, I love these short videos they produce, they always end up making me cry and always seem to be something that I need to see at this particular moment in my life.

 

I watched this and just cried because even though we are not old, and my husband thankfully does not have to suffer from such shaky hands, we both relate to this very much right now. Never did my husband and I as teenage sweethearts in sweet bliss ever think that at 27 he'd be pushing me around in a wheelchair, carrying me up and down stairs, spoon feeding me when I am most ill, getting me food, ice, water, whatever I ask for, helping me in and out of the shower so I don't fall, helping me in and out of my clothing so I don't fall and so I don't have to work so hard, etc. But he has and still continues to do all that and much much more and he never complains. So here's to my Forever Sweetheart, thank you for being the amazing selfless man you are, I love you and I'm so blessed to have you in my life!

On My Way Home... I'm home!

Well I'm on my way home! I'm wrapped in a blanket, sitting on a body pillow with my legs elevated on the dash (so they don't swell), my bed pillow behind my head, neck pillow just in case, lots of fans, spray fans and ice packs too for along the way. We have no AC, but we might get lucky and have pretty mild weather

, which would be a blessing for my body! There are tons of water bottles filled with water, water jugs, and a lot of Gatorade and powerade to get us home alive and hopefully feeling somewhat well. Well, as well as you can feel on a 12 hour drive with Lyme disease.

We've been home a few days now and getting settled. The drive was surprisingly cool, it was a true miracle catered just for what my body needed to survive the drive. My sister and kids are angels helping us get comfortable. The house had already been mostly decorated by my other sister and my mom, family sure is wonderful! It took my body a good 2-3 days to recover from the drive, though sometimes I feel I'm still recovering. I have had a lot of problems with edema in my legs lately, so I am concerned how my liver and kidneys are holding up. I'm having to keep my legs up a lot, I also have to rub lavendar oil on them every night or I end up awake in pain till 4am. I am frustrated at my body, I still have many or most days when I try so hard to be normal, and I end up tripping and falling on my face (usually right when I step out of bed) and remember I can no longer be the girl that goes 150mph. My last glut treatment was aweful, my veins are not happy with me.

But I'm happy to be home with my little family in our own home again for a few weeks.

Still Sick and heading home

I'm in the midst of getting ready to head back home to Idaho. I am nervous and excited. I made this decision for many reasons. One of which is that I am doing better. But when I say that, I don't mean that I am better. I am reminded daily of how sick I still really am. Take today for example, I really needed to wash my hair, that is one task that I can only do every 3-4 days because it takes up so much of my energy. So taking a shower, washing my hair, and if I want to try to dry my hair and put any make up on... well I'm pretty much spent the rest of the day. Forget any plans I had, they all go down the drain. So I end up laying in bed looking "pretty" and can't move because I'm too tired and in too much pain.

My liver is inflamed again and my spleen feels enlarged and painful, which isn't unusual since my Epstein Barr Virus titers were high and when a person has active Mono, you usually have an enlarged spleen. Either way, it has been painful. I am on a lot of heavy duty medications that can damage the liver, and I am also on a lot of supplements that are trying to help the liver clean itself out, so I keep praying that I won't permanently scar it in the process. My last blood tests showed high liver enzymes, but that was about 3 months ago. I'm awaiting new results to see what they say. I'm also having more and more acid reflux and can tell my stomach lining is taking a real beating from the minocycline. My yeast is coming back (even though I'm taking Diflucan and Nystatin to fight it), I see it every morning very clearly on my tongue (thick white patches and bad breath in case you are wondering). So there will be a lot to discuss at my next appointment with my Dr here in Seattle. I have delayed increasing my dose of Biacin this week because of my liver pain, seems I need to give my body a few more days to rest and I figure waiting till I get back to Idaho where I'm not in a car, is probably a better place to be when I increase my antibiotic dose again and await any herxheimer (die off) reactions.

There are many things having to be put in place in order for me to come home, some things I have to do when I get there, others like ordering my own wheelchair so we have one at the house when I need one is an example. Also ordering some pre-made meals from companies like Schwanns, that delivers to your home, looking for someone to come help clean the home once a week or so, etc. Until I can get back to doing it myself. The hard part is not knowing how long it will be before I can do all those things on my own again. Until then, life at home is going to be very different for us and very simplified. I have to be very aware of what my body is telling me at all times. For example, if we are out and about at church as a family and my body is telling me "you need to lay down" then I need to listen, leave, go home, and rest. I won't be able to have people over to visit often at my home for quite awhile until I can handle it. It's just a lot of adjustment for all of us.

Gratitude

I am going to make this short and sweet tonight. I have a Blogger app on my iPod that helps me be able to write quick posts, it's really great.

I have made the decision to head back home to Idaho to be with my husband as a family again. I can't remember if I said all this already, but I'm both looking forward to it and scared of how I will handle things. But tonight I just had a random thought that I am really grateful that these past few months (ex out the first month) I haven't had to go to the ER or be a hospital patient. I am grateful to my LLMD (Lyme Literate MD) for this. He has been so willing to work with me on whatever problems arise. So thank you Dr. Martin Ross! I look forward to going home and being able to work with him long distance. 

Savior, Redeemer of My Soul

I'm Just having one of those days again... The kind where I feel like I've been dragged and beaten. But all is well, I know things will get better. It's days like today that I really miss my husband and my home. I can't wait to be back home again and get daily hugs and kisses from him no matter how good or bad I'm feeling. But it is also these days that make me stop and really reflect on my Savior Jesus Christ and try to remember that he knows and has felt all I am feeling. It's hard sometimes to imagine there is someone who knows you better than yourself and has felt everything you are feeling. I have to remind myself that he is my Brother in every definition of the word, and my Savior who died for ME so I can live with my Heavenly Father again. He is there for me when no one else is, when I find myself in the fox holes and trenches of life, he is always there beside me ready to help, all I have to do is just ask and allow him into my heart. There are two beautiful songs that I want to share this Sunday. They are songs I listen to that help get me through some of my darkest hours. The first is called "He'll Find a Way" By Dallyn Vail Bayles

 

 

The second is called "Savior, Redeemer of My Soul" Also performed by Dallyn Vail Bayles (excuse the Spanish in this video, I loved the pictures though).

 



 

(For anyone wondering: Dallyn Vail Bayles is a member of the Church of Jesus Christ of Latter-Day Saints, he also played Hyrum Smith in the most recent Joseph Smith movie. He truly has a beautiful voice. These videos are not mine, the paintings are mostly done by LDS artists.)

 

I wonder sometimes why it is so hard to let the Savior in our hearts and our lives. It is one of the hardest and yet one of the easiest things we can do in our lives. But I believe it's hard for us as mortal beings because we have to take that blind leap of faith and TRUST him that he will help us, that he won't hurt us, that he won't let us down. I think in the easiest definition, trust is what makes it so hard. I also wonder how we can have these moments in our lives when we come so close to the Savior and feel his presence near us, and can bear true witness of his divinity because we have felt it... and then within months or years later when all is well again in life, we can forget those feelings and easily forget him and shut him out of our lives. To all who are reading this and struggling, let Him into your heart and life, he is waiting to help you:

 

Let him hug you and hold you in your time of need:

 

He is always there to wipe away your tears:

 

 

 

 

 

IV Glutathione in Photos

Well it's IV Glutathione day for me. Most Lyme patients have to go into the Drs office to have this done once or twice a week, which is expensive! Lucky for me, my Dr trusts my medic skills and has allowed me to do this at home. I thought I'd give you a photo view of how it's done... Granted, I was doing this all by myself ad taking the photos by myself, so sorry for the bad shots and blurriness.

The supplies out on my bed:  

Paramedic Liana (just having a little fun)

Pulling up Glutathione in the syringe

Glut and Sterile Water mixed and ready to be infused

Tourniquet on and seeing a good AC Vein...

Butterfly needles I use (really different than what I'm used to using as a Medic)

It's a 25G (tiny) so it really just pinches)

And we are in the vein...

Infusing by myself is a juggle!

And bummer... The vein was bad (too damaged from so many sticks in the past) so I had to re-stick a second time in the wrist

Fun stuff... (Being mostly sarcastic... Though grateful for the practice of my medic skills)

This is embarrassing to a Paramedic, we pride ourselves in getting it on the first "stick"

Oh well! Such is life when your veins are shot!

Well in all, I'm really really grateful I can do this myself, it saves money, gas, time, and I don't have to go into Seattle twice a week. Another great thing... I've gone 5 days without glutathione (usually I can only go 3 or 4), so I'm praying I'm starting to turn a good corner on fighting this Lyme. Till next time!

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!