Wednesday, December 31, 2014

Goodbye 2014

2014. What do I say about 2014? 

I can honestly say this has been the worst year of my life. And on the other hand I can say this has been the best year of my life. "My life" is a funny phrase. I mean, I'm 24. Only a quarter of the way there. So how much worth does "best or worst year of my life" hold? 

I think it holds a lot of value. I'm sure I'll go through difficult seasons and experience great joy and deep loss in the years to come. I'm sure I'll hate seasons of my life and also see God's hand move mightily. But this season, this year, was a big one for me. 

(And this is where I start to cry) 

I battled out a disease that had been killing me since the day I was born. I felt such deep physical pain I wouldn't even know how to put it into words. I was mentally tourtured. I slept on the bathroom floor. I overdosed on medicine. Faced some of my biggest fears. Had a PICC line placed and felt the pain of that line tug at my heart and pull veins as it coiled. Experienced torturing amounts of rage, depression and anxiety, in which I had no control over. Infused my own IV abx. I was bedridden. I sat in a wheelchair. Was told by the nurses they thought I didn't make it. Pain and torture. Pain and torture. 

And I beat it. I beat all of it. I looked death in the face and won. Jesus won. 

I still can't believe 2014 was the year my life would change. After having symptoms since my 1st birthday and praying and fasting and having the mustard seed faith - I saw the miracle happen. I was a part of the miracle. I can't get over that. 

Don't get me wrong, I haven't had a pain free day yet. But I'm driving! And did a 5k. And have a sound mind. Haven't sat in a wheelchair or fallen over in 13 weeks.  2015 will be the year I say I had a pain free day. I won't settle for a day though. I need it to become my life. 

What did I learn? Oh man I could go on for days about what I learned. I learned that family isn't always blood or paperwork. I'm a fighter and a warrior and nothing can beat me because Jesus lives in me. Prayer works. I don't owe anyone anything. Life is messy but beautiful. My life is worth it and necessary. God is good. He's unfailing good. The darkest nights are really where you meet with the deepest grace and love of Jesus. And I learned that the faith of a child can change everything. 

I couldn't have done this year without a few particular people. 
My brother was a trooper. Making sure I ate and had water to drink. He checked up on me constantly. Walked me to the bathroom. He made me smile when I didn't want to keep moving on. 
My dad kept the laughter going.  His faith encouraged me. Some people call it being oblivious, but I say otherwise. My dad knew I was gonna make it. He had do doubt in his mind that his daughter was a fighter and victorious. 
My dear friend, N. I didn't have many friends this past year and not only did she stick with me but she understood all of it. God knew what He was doing when He made us friends. To have a friend stick it out with you is amazing. But to have a friend stick with you and understand you is simply wonderful. 
My best friend, A, amazes me. Every Wednesday, without fail, she came to my house and spent time with me. She hung out at the er and held my hand. She saw my highs and lows. She's a true friend. I'm glad I get to celebrate and party in this new season with her. 
My mom is my hero. My mom is quite possibly the most amazing woman on the planet. And in the history of ever. There are no words. She took in her son in law and daughter and loved with no strings attached. My mom taught me you don't have to live in a 3rd world country or give a bed to the homeless or adopt all the children to save the world. Sometimes saving the world is holding your daughter's hand and telling her she's gonna make it. It's crying out to Jesus  when doctors shrug their shoulders. It's laying down your life and sacrifice everyhing to meet someone where they are at. My mom is a hero. My mom is my hero. 
Tanner, my husband. He's the best. Like really. If you want to be a better husband you talk to him. Not many husbands will stand by their wives when they are mentally and physically sick while living in their in law's house 2 years into marriage. He sacrificed a career and school and being a newlywed to see me healthy. He's a man. And he's a handsome man too ;) 

Thank you. There seems to be no power in those words, but thank you. 

2014. Pain and torture. But God. Great joy and hope. I think that's what I have to say about 2014. But God. Where there was no way He made a way. Where no one else could reach me, He found me. But God. 

"It was the best of times, it was the worst of times." 
Goodbye 2014. Hello 2015. 

Thursday, December 11, 2014

Month 15(prt 1): Where I'm At

Well hello there! I haven't written in over a month. Life has been a little crazier for me since getting healthier. I also wondered if anyone wanted to keep reading my blog once I wasn't bedridden anymore... So I guess we will find out ;) 

I'm currently off all antibiotics. Everything I take to kill Lyme Disease is a supplement. Still battling borrelia and babesia. Bartonella is not an issue for me :) and it's going to stay that way! I'm still on ambien for sleeping, hydrocortisone for my adrenals (but I'm slowly coming off), and hormones to get my body to start making some (living in perimenopause at 23 was not ideal). 

Every week I go for lazor therapy and chiropractor. Once a month I go to Dr.N for Lyme treatment and I go to L for NET therapy. I see Dr.L for hormone therapy every other month. And I am currently getting all the mercury out of my teeth. It's split up in 4 parts and I just finished part two yesterday. I do that every 2-3 weeks. 

I have not relapsed in two months. Don't get me wrong, I occasionally have days were getting out of bed is not an option. But those are not often. I have way more good days than bad. I haven't had a "pain free" day yet though. Still at about 80% better. My ribs, chest, knees, feet, and spin still bother me. But those might all just be structural issues and adjustments will help that. Plus I'm moving all the time and my body is not used to that! I also deal with little things like ringing in the ear, floaters, headaches... And that can all be connected to the mercury in my mouth. 

I walked a 5k on Thanksgiving day. It was my first 5k ever! I cried and laughed when I finished. Haven't been so proud of myself ever before! 

I'm doing yoga and pilates and going for walks regularly. I'm driving my car. Haven't gone downtown yet or highways... But I'm getting there :) 

Learning little tricks to help with some of the pain still left. Baths are my best friend, no metal, no potatoes or tomatoes. I've been learning breathing technics to help with anxiety and sleeping. I'm sleeping- I take ambien, but I'm sleeping. I've only had a handful of anxiety attacks in the last couple months. I used to have a few a day. I can usually catch the anxiety before it happens and either leave the place or use my new technics. 

I'm learning to enjoy each day. Relapses are totally normal for Lymies. My doctor has told me to be aware of that. And all my Lymie friends have said the same thing. I don't want to relapse nor do I plan on it- because I believe Jesus healed me. But sometimes I let my brain go there and start to worry that the knee pain will get bad enough I need the wheelchair. Or if the headache will turn into a mirgraine and I'll lose my vision. I'm learning to not let fear of what could happen control me. 

Tanner and I are dealing with medical bills. Looking into getting a lawyer to help us cause our insurance won't pay anything from the ER visits or PICC stuff. We are also looking into moving out of my parent's house because I'm doing so much better. Moving out scares me. I'm worried I won't be ready or I'll relapse or have a bad day... But I need to not allow fear of what could happen and live each day as it comes. 

No, I haven't gotten a job or gone back to school. I'm still learning how to do life again. And each day is so unexpected. Like I said, I still have bad days. And I'm learning how to work through anxiety, pain, and such. Some things still irritate me like talking on the phone, going somewhere new, dealing with a long to do list. I'm not stuck with not being able to do those things, I'm learning how to work through them. Baby steps. 

Please keep praying for complete healing. Please also pray for wisdom for Tanner and myself about moving out and medical bills. I'm ready for this season of life to be completely over with and behind us. 

~ "What if I fall?" Oh, but my darling what if you fly.

Monday, November 3, 2014

Encourage Your Heart

wanted to share with you some quotes, Scripture verses and songs that I went back to a lot over the past year. These are some songs that were on repeat. And words I read over and over. I hope they can encourage your heart too...

Bible Verses

- "I remain confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lordbe strong and take heart and wait for the Lord." Psalm 27:13-14
- "My health my fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever." Psalm 73:26
- "When you go through deep waters, I will be with you." Isaiah 43:2
- "The pain you've been feeling, can't compare to the joy that's coming." Romans 8:18
- "When I said, "my foot is slipping, "Your love, O Lord, supported me. When anxiety was great within me, your consolation brought joy to my soul." Psalm 94:19
- "After your season of suffering, God in all His grace will restore, confirm, strengthen and establish you." 1 Peter 5:10
- "I am a prisoner of hope." Zechariah 9:12
- "But the Lord stood with me and strengthened me." 2 Timothy 4:17
- "Be truly glad... There's a wonderful joy ahead." Peter 1:6
- "The Lord goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed." Deuteronomy 31:8
- "She does not fear bad news; she confidently trusts the Lord to take care of her." Psalm 112:7
- "The Lord God is my strength, my bravery. He will walk me through places of trouble and suffering." Habakkuk 3:19
- "Blessed is she who believed that there would be a fulfillment of what had been spoken to her by the Lord." Luke 1:45
- "So do not fear for I am with you, do not be dismayed for I am your God. I will strengthen you and help you, I will uphold you with my victorious right hand." Isaiah 41:10
- "But He gives more grace..." James 4:6 
- "By His wounds we are healed." Isaish 53:5 
- "Why am I discouraged? Why is my heart so sad? I will put my hope in God! I will praise him again--my Savior and my God!" Psalm 42:11
- "You intended to harm me, but God intended it all for good."  Genesis 50:20 
- "The Lord is my shepherd; I shall not want. He maketh me to lie down in green pastures: he leadeth me beside the still waters. He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake. Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord forever." Psalm 23
- "Those who live in the shelter of the Most High will find rest in the shadow of the Almighty. This I declare about the LORD: He alone is my refuge, my place of safety; he is my God, and I trust him. For he will rescue you from every trap and protect you from deadly disease. He will cover you with his feathers. He will shelter you with his wings. His faithful promises are your armor and protection. Do not be afraid of the terrors of the night, nor the arrow that flies in the day. Do not dread the disease that stalks in darkness, nor the disaster that strikes at midday. Though a thousand fall at your side, though ten thousand are dying around you, these evils will not touch you. Just open your eyes, and see how the wicked are punished. If you make the LORD your refuge, if you make the Most High your shelter, no evil will conquer you; no plague will come near your home. For he will order his angels to protect you wherever you go. They will hold you up with their hands so you won’t even hurt your foot on a stone. You will trample upon lions and cobras; you will crush fierce lions and serpents under your feet! The LORD says, “I will rescue those who love me. I will protect those who trust in my name. When they call on me, I will answer; I will be with them in trouble. I will rescue and honor them. I will reward them with a long life and give them my salvation.” Psalm 91 


- "There is no pit so deep that God isn't deeper still." Corrie Tenbion
- "If you're going through hell... Keep going." Winston Churchill
- "I walk slowly, but never walk backward." Abraham Lincoln 
- "You may suffer many defeats in this life, but you will not be defeated. You will rise after each trial stronger and wiser." Leon Briwn
- "It's hard to beat a person who never gives up." Babe Ruth 
- "Even the darkest night will end and the sun will rise." Vieten Hugo
- "God is most glorified in me when I am most satisfied in him." John Piper 
- "When I cannot read, when I cannot think, when I cannot even pray, I can trust."
- "Courage, dear heart." C.S.Lewis 
- "One day, in retrospect, the years of struggle will seem to you as the most beautiful." Sigmund Freud
- "Your greatest ministry will likely come from your deepest pain."  Rick Warren 
- "I don't care how long it takes me, but I'm going somewhere beautiful." 
- "Every time you find some humor in a difficult situation, you win." 
- "And if not He is still good..." 
- "If you're absent during my struggle, don't expect to be present during my success." - Will Smith 
- "When someone is going through a storm, your silent presence is more powerful than a million empty words." 
- "There are some of Your graces which would never be discovered if it were not for your trials." C.H. Spurgeon 
- "In times of affliction we commonly meet with the sweetest experiences of the love of God." John Bunyan 


- "Christ Is Enough" Hillsong
- "Healer" Hillsong
- "How He Loves" Jesus Culture
- "I Am" Crowder 
- "Make A Way" Desperation Band
- "Oceans" Hillsong
- "Oh God" Citizens And Saints
- "The Sun Is Rising" Britt Nicole
- "You Make Me Brave" Bethel Music
- "Cornerstone" Hillsong
- "Lord, I Need You" Matt Maher
- "Not For A Moment" Vertical Church Band 

Friday, October 10, 2014

Month 14(prt1): Can't Kill Me

Take a deep breath.

And another one. 

Even slower. 

Now read Psalm 23. 

That, mixed with the worst pain of my life and fear and anxiety was me a few weekends ago. But I lived. I'm alive. 

About a month ago, the day after I started my new treatment, I started getting these weird episodes. I felt like my body was completely shutting down. I couldn't move, talk, think, had a hard time breathing... My family described it as being petrified. My functioning abilities would completely stop. Lasted between 5 min to a couple hours. 

I had these episodes from Tuesday through Thursday. When Tanner and I were at small group Thursday night (about 4 weeks ago) I felt my chest getting hot. I thought maybe it was a weird rash or just anxiety, so I kept trying to brush it off. I was zoning in and out and was completely off. 

We got home from group and I couldn't shake how I was feeling. When I went to go flush my PICC line I noticed blood around the PICC site. So Tanner took me to the ER. The dr looked at it and decided it was probably just placed wrong and my home nurse can fix the dressing in the morning. So we left. 

Halfway home I kept complaining to Tanner about the chest pain, so we decided to go back. They brought me back to a room and started doing tests. EKG, X-ray, blood work. The er dr came back saying he thinks it was a mixture of Lyme Disease inflammation and anxiety. He also said that my PICC line was looped in my chest. He said it was no big deal and to show my nurse in the morning. So I went home. 

We got home at about 430am and I layed awake till about 6 in debilitating pain. When Tanner started getting ready for work I crawled downstairs and sat with my mom on the couch completely flipping out. Seriously, the pain in my chest was so bad. Beyond bad. I was convulsing from the pain. So obviously mom brought me back to the er (a different one this time). They checked my tests from the night before, did more tests, and gave me lots of morphine. The er dr came in saying my PICC line had coiled under the base of my neck, pulling my veins with it. It should have stopped right above my heart but was in the base of my neck on the right side.... Yeah, that hurts, to say the least. 

They pulled it. And the line came out curled. The nurse bandaged me up and sent me on my way. She said the pain should go away. It was Friday afternoon and I had had no sleep since Wednesday night. I was exhausted, still in pain, and dealing with anxiety. 

That night the pain just kept increasing. I told myself I could go back to the ER or start praying, worshipping and reading Scriprure. I chose to press into Jesus. So that night my mom and Tanner joined me in crying out to Jesus to stop the pain. This went into me proclaiming God's Word and promises. Which finished in me dancing around my room worshipping my Jesus. I was declaring Who's I was, God's character, and who I am. I, at one point, was jumping on my bed and singing as loud as I could - taking my life back. 

Some friends of ours came over late that night to help with the hiatal hernia by adjusting me. They also told me about this lazor thing that has been helping people feel better- I was gonna try it Monday. 

Didn't sleep that night either. Still more pain than I'd like, anxiety, and shaking. 

Saturday morning my mother in love came to get me to take me back to the chiropractor, and pick up some pain killers my dr sent in for me. She also sat with me and helped me eat to take the new meds. 

Throughout the day the pain just kept increasing to the point where Tanner put me in the bathtub to try and calm me down. Didn't help at all. I started hyperventilating and shaking and begging them to take me back to the hospital. I even told Tanner I wouldn't leave the hospital without relief or being admitted. 

The ER did more tests and the dr came back saying I just need to calm down and let my veins calm down. They have been being tugged on. I asked to be admitted and they said they had no reason to. 

When I waited to sign the last bit of paperwork I felt hopeless and terrified. My husband and mom were in the room exhausted after two days of hell. My best friend was holding my hand. And everytime I tried falling asleep the machine started beeping. The morphine had done nothing - and I was gonna go home like this. 

Again no sleep. 

Then Sunday I spirled downhill. The pain meds didn't help, I couldn't sleep, I wasn't eating or drinking. And the pain just kept increasing. The hospitals couldn't help me, my dr didn't know what to do at this point, and God wasn't answering my prayers- my heart cries! I felt abandoned and alone. I thought I was dying. I remember thinking "this is it. I'm gonna die. No one can help me. Jesus won't heal me. I'm out of faith. I can't live like this... I'm barely even living..." And the thoughts got darker. Hopeless. Abandoned. Rejected. Terrified. Scared. Alone. Forgotten. Lost. Anxious. 

Finally Tanner called some friends of ours who didn't answer. He then called another friend, who was at the first friend's house right up the street. Both their families invited us over for prayer. 

I went to my pastor's house in polar bear pajamas, a greasy messy hair bun, and one of Tanner's shirts on. I was a mess. Physically, emotionally, mentally, and spiritually. 

They cried with me for a little while, then we prayed. For three hours we pressed into Jesus. We worshipped and prayed and cried out and waited. We all told Jesus "this is it! You have to heal me. There is no other option." One of their younger sons prayed over me "Lord, heal Mrs.Bekah or she's gonna die." As morbid as that sounds it was the truth. I was beyond the end of my rope. I wasn't  standing on the cliff of life or death I was falling off the cliff.  

"Jesus do something"

And He did. He gave me peace. Peace that surpasses ALL understanding guarded my heart and mind. I rested in my Saviour. Despite the pain and fear I knew I was gonna be okay. Jesus had me. Jesus is my Prince of peace. 

Over the course of the next few days I went back to that peace. When the pain started back up I rested in Jesus. When the fear crippled in I listened to Psalms. When I started having anxiety I took every thought captive in the obedience of Christ and focused on Jesus. And new things started filling my heart and mind. Hopeful. Rested. Peaceful. Energy. Life. Found. Accepted. Love. Faith. 

I also saw my chiropractor, started that lazor thing, and say my therapist.

My life started changing. A week after all that PICC stuff I went to the Farmer's Market with my parents. Walked around by myself. Then two weeks after being in a wheelchair and thinking I was dying I went for a hike! A mile hike in the gorgeous, autumn, Colorado mountains. Tanner and I actually sat down in a field and enjoyed the snow and yellow leaves and perfect weather. We did Psalm 23. 

That weekend we shared our testimony with our church. We celebrated with our church that Jesus heals. It was a huge faith moment for Tanner and I because telling everyone that Jesus healed me made it real. "By the blood of the Lamb and the word of our testimony..." 

I've been hiking, dancing, driving, and walking for a few weeks now- and it's amazing! 

I saw Dr.N Monday. He was completely blown away by the change. I told him it was a miracle. I'm not 100% yet, but I'd say I'm like 80%. I feel the best I have in a long time. Still dealing with some symptoms I'd rather not, but Dr.N said he thinks I'm almost there. 2-4 more weeks of treatment and he said he thinks he'll be able to say the "remission" word. I know that means HEALED! 

At one point I was jumping up and down during my appt and telling Dr.N this is the real me. I love life and I'm energetic and I smile a lot! He said, "I knew this was the real you. I saw this person. I've seen a very sick girl over the past year with a great attitude." And he gave me a HUGE hug. He thanked me for not giving up, and I thanked him for doing the same thing. 

Still on a journey, but it's good :) Only moving forward from here. Now Tanner and I are trying to tackle all those medical bills. About $30,000. But I don't feel hopeless. I can't wait to see how Jesus is going to come through with this one :) I'm ready to live life. 

I've suffered with mental and physical illness for 23 years. Cried out to Jesus, fasted and prayed, was brought to the elders for anointing, had faith the size of a mustard seed... And nothing. I was discouraged and hopeless. I questioned and doubted. But others told me to keep pressing into Jesus and not give up. 

Please be encouraged by this. Keep pressing into Jesus. Don't give up. No matter how long you've been crying out God hears you and He loves you. Don't give up. Your "but God" moment is going to happen. I don't know how or when or what that looks like, but it will. God isn't allowed to leave you or forsake you. "Where there is no way God makes a way." 

My lovely mother in love, Cheryl, and her sister, Julie, set up a gofundme account for Tanner and I to help with the insane amount of medical bills we are up against. Here's the link if you want to check it out. Cheryl's letter is amazing. 

~ Can't kill me.  

I love comments ;) 

Wednesday, September 24, 2014

Month 12 (prt 2): Not Mine

Just been living the Lyme life. I thought I was getting better for a couple days last week, but then the past few days haven't really followed suit. I hate that about Lyme Disease. One day tolerable and the next miserable. It's like a surprise each day or sometimes each hour. As my friend just reminded me there are lots of corners to turn along the way to recovery. 

Recently I've started experiencing symptoms I haven't in a while. I feel like I have no control over my body with random jerks, twitches, spasms, feeling like dead weight and I can't move. My feet have also been burning and my skin has been turning bright red and feels like needles being stabbed in it. Spleen pain and chest pain is getting bad. My anxiety is through the roof too. Like paranoid anxiety. Freaking spirochetes in my brain. 

A couple days ago I called Dr.N and he switched stuff up again. This is like the third change to my protocol this month. We think I'm flairing bartonella now. My babesia symptoms have started to calm down a little, but my bartonella symptoms are flairing now. Which can be viewed as a good thing cause that means it's active and we can attack it. 

I'm not infusing right now because Dr.N wants to see how I am without it, see if I can maintain. I'll find out in about a week if I get my PICC line pulled or not. I'm really nervous about that to be honest. My biggest concern is that it'll get pulled and I'll need it again soon. And it costs about $4000 to place. But I know every day it's in, my chances of an infection get higher. I mean God has so protected me the past almost 6 months with no real concerns. Which is amazing. PICC lines don't usually last that long with no real issues. The worst is that my skin is completely done with the line in and dressing over it. 

Lately I've been super discouraged like to the point where I'm concerned something else is wrong, that I'll never get better, that there is too much damage, that this is it. I feel like this battle is too much for me and I'm not strong enough to beat it. 

And I was reminded by Jesus that it's not my battle to win, but His. He wants to fight for me. He wants to make the impossible possible. He wants to show off. He wants to overcome every obstical in my path.  He wants to show His glory. That's just who He is. 

"... This is what the Lord says: Do not be afraid! Don’t be discouraged by this mighty army, for the battle is not yours, but God’s. Tomorrow, march out against them. You will find them coming up through the ascent of Ziz at the end of the valley that opens into the wilderness of Jeruel. But you will not even need to fight. Take your positions; then stand still and watch the Lord’s victory. He is with you, O people of Judah and Jerusalem. Do not be afraid or discouraged. Go out against them tomorrow, for the Lord is with you!” - 2 Chronicles 20:15-17

Determined and hopeful. Those are my words. I don't let my mind think anything less than healing. I don't know what that looks like or the time frame but I know I'll achieve it one day. I have to. No other option. I'm a warrior and a fighter. I don't give up and I don't expect the worst. I know that God's plans for me are for good and for me to prosper and have a future. I have no idea what that looks like, but I trust God knows and they are good. Basically, I refuse to let Lyme Diseaae beat me. I have too many promises from The Lord. 

Prayer Requests:
• That it will be evidently clear to Dr.N to pull PICC or not
• Lots of favor from our insurance company to start paying for treatment. For them to repay us what they've called "medically unnecessary" and for them to get on board with further treatment
• Peace 

~ "When all of a sudden I am unaware of these afflictions eclipsed by glory. And I realize just how beautiful You are and how great your affections are for me. And  oh, how He loves us so."

 If you want to comment just put down as anonymous to post. I love comments ;) 

Tuesday, September 16, 2014

One Year Down

A year ago today I was rolling over after a terrible nights sleep. I didn't actually sleep though. I moaned and groaned and cried out in pain most of the night. Terrible lower back pain and stabbing pain in my chest. I remember I had tried to wake Tanner up, but he was fast asleep. I didn't really try that hard though because I had no energy. 

The week before I was diagnosed with cellulitis (a bacterial infection that goes under multiple layers of skin and inflames your skin and makes it itch- a deep itch that doesn't go away). I had an allergic reaction to the medication and went back to Urgent Care two days later. I was then put on a different abx which helped, but then, once I finished the dosage, I got very sick. Come to find out later I was herxing from the abx. 

It was a Sunday and I was sick and "woke up" sick the next morning. Tanner had to go to work so mom picked me up to take me to my nutritionist. I was not supossed to see Dr.N till February. Mom and I were gonna meet with a lady that morning who sees Dr.N to learn more about LD. Mom called her to inform her that we couldn't meet cause I was in more pain than ever and we were on our way to the ER. 

About 15 min later she calls back to inform me she got me an appointment with Dr.N that day. She was gonna give me her appt for the following week, but when she called the office she was told someone just canceled their appt and I could have it- that day! We had to leave within 30 min though to get there in time. We ran home to print off the paperwork, picked up Tanner and were on our way to an appt that would forever change my life. 

I remember the car ride was bad. 2 hours on the highway in the back of my Subaru with ice packs on me. I moaned and groaned and yelled and cried in pain the whole way there. 

After I explained my life away Dr.N confirmed what I already new- Chronic Lyme Disease and coinfections. I was textbook Lyme. From the biggest of pains to the randomest of symptoms- I am a Lymie. 

I left feeling so many emotions. I wanted to smile because I finally had an answer. I wanted to cry because I knew this journey wasn't going to be daisies and sunflowers. And I wanted to laugh because it's ridiculous how I had been failed by all the other doctors before him.

This year has down right sucked. Actually that word doesn't even come close to describing it. It's been hell.  We moved in with my parents because of financial stress, and didn't move out because Tanner needed help taking care of me. I haven't worked or gone to school. I spent weeks at a time having to be carried anywhere. I spent night after night screaming and crying out in pain. I had gone long periods of times only seeing my parents, brother and husband. Taking over 40 pills a day. Got a PICC line put in. Infused for 6 hours a day at some points. 

When I think about this year I just want to cry. Happy tears and sad tears. Sad tears because of the unrelenting pain, sleepless nights that turned into weeks, all that I missed out on, and all that LD put me and those around me through. And happy tears because God is faithful. He hasn't left or abandoned or forgotten me. His love is powerful, His peace is strong, and His grace is sufficent. 

Loneliness. That's been the hardest part. Seeing people having fun and enjoying life is hard. Laying in bed when everyone else is adding to society is depressing. If it weren't for the people I live with or a couple dear friends I would have gone weeks without talking to anyone. I've "lost" friends and family because of how this disease has affected me. People don't get it and take it personal. I'm sad about the relationships that have been stolen and stopped by LD. I miss people. 

It's hard to think what I was doing a year ago. Going to school, babysitting/nannying, living in our apartmet, hanging out with family and friends constantly, taking yoga and water aerobics classes, leading a small group every week, going to church every week... Compared to this? Downright sucks. I miss life. 

I talk about the pain and torture not because I dwell on it but because I want to help people understand. I want the truth of this nasty disease to get out there. I want people who feel stuck in an undiagnosed or misdiagnosed sickness to not feel alone. I want this ugly thing to be brought to light and stop stealing hope and lives. It's for education. 

But the things I've learned outweigh all that crap. I know, beyond a shadow of doubt, that Jesus adores me. The people that have stuck through this with me, even when I thought I was mentally crazy, mean so much to me. They amaze me for loving me through this. When I meet people who's doctors have been given up on them and I can tell them about LD is rewarding. Being a part of this world has opened my eyes to so much more. 
I'm able to relate with people in a way no one else can, unless you've had a chronic disease. I've learned how to completely trust my Savior through medical bills, symptoms, dr. visits, tests, this whole year. 

Thank you to all of you that brought a meal, dropped off flowers, visited me, texted me constantly (even when the answers didn't change), reminded me of Truth and my remission party, gave me a spoon, and stayed by me on the darkest of days. You've kept me going. 

Being diagnosed has completely changed my life. Not only did it give me an answer to symptoms but it's given me something to fight for... Or against. I fight for my life. And I fight for other's lives. This disease has stolen too much from me, other Lymies, those misdiagnosed and undiagnosed. 

When I think of this past year I think of the word "fight". Fight for my life. And for my future. Fight for those who have no medical answers. Fight against insurance companies. Fight for treatment. Fight for remission. Fight for life! 

Giving up is not an option. 

I fixed my settings so people can now comment on my blog. Just put down as anonymous and you can post. I love comments! Please comment :) 

Friday, September 5, 2014

Month 12 (prt1): Get Back Up

I saw my Doctor almost two weeks ago. So not where I should have been, but that's part of the game with Lyme Disease. You get worse before you get better and one thing could go right for a while but then other things can flair up. 

Long story short borellia (one of the three infections I have) is under control, not dead, but under control. Babesia (a coinfection) and bartonella (a coinfection) has flaired up pretty bad. Those are big fat boogers. And all the abx have made yeast flair up. But if I stop abx to clear up yeast the LD will come back worse. So all of my treatment was changed. I am to call Dr.N at the end of this week if I haven't gotten better so he can change treatment again. 

A lot needs to change by the end of the week though because I'm miserable. I feel like I have maleria/babesia (thought I had makeria in 2007 coming back from Uganda. Now looking back it was probably a babesia flair up- they are very similar). I'm so naseous, fevers, fatigue, dizzy, vertigo, shaking, headaches, chest pain, heart pain, migraines, heart palpitations/racing, so much anxiety. Just an overall BLAH feeling. I think it's a Herx. I hope it's a herx. Die Lyme, Die! 

A few days ago I spoke with a friend. He was telling me about how boxers (I think it was boxers. Silly Lyme brain) win. He was telling me that even if you are the weakest of the two and you keep falling down from each hit you can still win. You win by doing one thing. One thing that discourages the other boxer. He told me you get back up. That's all you have to do. Even if you're the weaker of the two, if you get back up after each hit the other boxer gets more and more discouraged. While you get stronger and stronger, just by getting back up. 

It's the same with fighting this disease. No matter how tired I am from getting no sleep. Or how much pain I'm in. Or how week I am. If I get back up I win. Because every time I get back up it discourages the Enemy. And sooner than later he's gonna get so discouraged by me getting back up after each hit, he's gonna give up. As long as I don't give up, he will give up. And I will win. 

I've got my lyme green boxing gloves on, I'm in the rink and I'm gonna win. Even if I fall down a ton, I'll get back up each and every time. 

Those of you that are dealing with a chronic disease. Mental, physical or both. You amaze me. You deal with pain, insurance companies, loneliness, dr. appts, hurtful comments, people not getting it, days spent in bed, having no control over the things your body does and thinks. And you're still here. You're still pushing through. You're still alive. And I'm proud of you. I may not know you very well. But if you are batteling for your health, physically or mentally, I'm proud of you. You are an inspiration and a true warrior. Keep fighting. It'll be worth it. 

Energy Expelled: This took a week to write. The vision in my eyes is pretty bad. I'm naseous, dizzy, and feverish. My hands are cramping up and my fingers aren't too thrilled about life. And I've got a nasty migraine coming.  

~ This is not the end. 

Sunday, August 24, 2014

Month 11(prt 2): Ammunition To Fight

This month was not what I had expected. I thought when Dr.N said I had turned the corner I would have seen only positives this month. That wasn't the case. I ended up at Urgent Care, went to ER, been in more pain than I have in a while, dealing with totally unnecessary drama, and some of my symptoms have come back :/ 

I hate Chronic Lyme Disease. 

As I write this I'm at home while everyone else is at church. My husband, family, friends and small group are all at church and I'm so bummed I'm not there. I was going to go because this weekend is a huge party to launch the small groups and invite people to join in community- cause life should not be done alone. But I'm super irritable, overly sensitive  (sound and light) and in pain. Yes, I'm having a pity party in my room.  

I've been trying my best being positive. Writing down what I'm thankful for and what blesses me. I've been trying to surround myself with positive life-giving people. But some days it gets to me. Some days I'm so bummed I'm missing out that all the positive thoughts, praying and thankful lists can't make it better. 

Like for real, I just want to go to the beach or to the zoo or to the state fair or hike ... I want to be human for a bit! No meds to take, no infusing to do, no resting, and no pain! 

I miss life. I miss showers not being marathons. I miss driving my car. I miss making plans and keeping them. I miss not "paying for it" the next day. I miss being able to fill up my whole water bottle alone. I miss hiking. I miss having a hard apple cider. I miss dancing. I miss a lot. From big things to things people take for granted everyday. Things I take for granted.

I think I'm just super disappointed. I thought this month was gonna be different, but instead it's been a plateau... Well, actually, it's been some steps back. My feet started hurting again. The pain in my spleen, lower back, heart and chest is worse. Heart racing, skipping beats, and pausing has been worse. I'm irritable, sound/light sensative again. And the stupid ringing in my ears is loud. Like I-can't-think loud. Among a few other things. 

But I still need to look for the positives. Otherwise this gets too hard. My moods are still pretty stable (I mean for a girl ;). Depression and anxiety have not gotten worse. I have a bit more energy. Can still walk on my own. And the hiatal hernia hadn't caused me any issues in a few weeks! So yay for all that! 

I went to the hormone treatment doctor last week. Let's just say it's a good thing I'm going to her. My blood test came back with my hormones in a few cases being extremely  low.  She works with Lymies as well and said this could be the reason I keep plateauing/relapsing. So this hormone treatment can help the Lyme treatment. Here's to hoping so! 

I'm not depressed. I'm not angry. I'm not bitter or hating life. I'm just disappointed. I'm ready to be in remission. I'm ready to have a job and go to school. I'm ready to live with just me and Tanner. I'm ready to move on from this season of life. I'm ready. And even in the hard, painful, lonely days the readiness is stronger than the sadness. My eagerness to keep fighting this tormenting, despicable, painful disease is stronger than my disappointment that it isn't going how I want. 

And sometimes on the days I can't take anymore, the days I want to pull out the PICC line and call it quits, I feel stronger. Caus, in that moment, I have to make a choice. Do I want it? Do I want to kick Lyme disease in the butt and say I beat it? Do I want that more than having a pitty party and throwing in the towel? Yes! I want it! I want nothing more than to hear Dr.N say "you're in remission". I want nothing more than to tell all of you I beat this. I want nothing more than to be victorious over chronic Lyme Disease. 

And so despite the pitty party happening. Despite the pain and loneliness. Despite Lyme Disease. I fight. And I'll win! Cause I  want that more than I'm tired and sick and hurting. I want to beat this. I have to beat this. 

And in the hardest of days, the days where fighting for my life seems impossible, I ask myself- what do I want more? To let Chronic Lyme Disease beat me? Or for me to beat it? 

• I'm thankful I can live stream church service
• I'm thankful God made me a fighter, more than a conqueror, victorious, passionate, and strong spirited
• I'm thankful for a car ride into the mountains with my husband 

~ "But He gives more grace" James 4:6 

Friday, August 1, 2014

Why I Wouldn't Trade This Season

This is not wasted time. I've been trying to soak up everything I've learned and not miss anything. The things God has shown me and what I've learned and how I've grown makes this season worth it. The good that's come from this outweighs all the crap from it. I've been invited into the Lyme world, in which most people know nothing about. I now know the pain, neglect, financial burden, tears, lost time, lost dreams, abandonment, guilt, and fear of having Chronic Lyme Disease. And I can apply it to help bring hope and encouragment to others. Whatever that looks like. 

Why I wouldn't trade this time for anything:
• If I've learned anything it's about my Jesus' love for me. There is something about all that I've walked through that has made God's love for me undeniable, unshakable, relentless, and true. I know without a shadow of a doubt that Jesus loves me. 
• I'm strong. I don't mean physically. But for crying out loud I've had a PICC line, infused for 6 hours a day, had a colonoscopy, an upper endoscopy, had my blood drawn at least once a week for four months straight(and continuing), too many ultrasounds, and cat scans, MRI, had my stomach pulled down, been in more pain than most people ever will, had injections in my nerve next to my swollen spleen- twice!, been hospitalized many times and left without any answers- just to name a few- and I'm 23. And guess what?!?! I made it! I lived through it all! 
• God's grace is truly enough. All the nights I thought I was gonna die. Layed in bed with Tanner and my mom praying over me. Those nights a normal human would call 911, but I knew they couldn't help me so we prayed and cried through it. It's only by His grace I lived through those nights. 
• Life is so much more precious to me. Every moment is so important. I don't want to waste any of it. I want to soak up every smell and feeling and sight. 
• The power of looking ahead, finding the good, and positive thinking is amazing for the mind. Which then is amazing for the body. 
• God's character and promises have become my foundation, and the most tangible things in my life.
• God doesn't do well in boxes ;) I was anti so many of the things that have gotten me better. God truly does move in mysterious ways. 
• I don't "owe" anyone anything. I can say "no" and I'm totally allowed to say "no". Keeping myself healthy is basically my only job. And the freedom I've found in that has spread into so many other areas of my life.
• Giving up is not an option. I can't throw in the towel. I can't quit the class. I can't walk out or leave the conversation. My only option is to fight and keep moving forward. 
• I would rather only take steps forward as slowly as I possibly can, than move two spaces ahead quickly but then a step back. This is a marathon, not a sprint.
• I have the choice to be furiated and bitter at the people that should have walked this out with me, or I can learn from what they've done and haven't done. I can take notes and learn how to actively help others. I can take what I wish they would have done and what I needed and apply it. One way makes me bitter and stiff, the other brings freedom and stops the vicious cycle.
• I've been invited into a world most people don't know exists. A world full of chronic mental and physical diseases. A world full of Christians that deal with depression and anxiety and PTSD. I'm one of them. Doesn't make us bad people. Doesn't mean we don't trust Jesus. Just means we have an organ, a brain, and they need special attention! No different than someone with liver, kidney, or heart issues.  You can't tell me that there is a difference between someone taking pills for their kidneys and someone taking pills for their brain. 
• I have no idea what the person next to me is going through. The "healthy" looking lady using the electronic wheelchair at Walmart could be fighting bartonella eating at her legs and feet. The  teenager that is angry and hostile could be dealing with spirochetes attacking his brain. The people that get "annoyed" when children are screaming could have extreme sensitivity to sound. And the screaming gives them siezures. The kid that misses school a lot and you think is faking it, isn't. They are truly that miserable and are trying to figure out how  they can hurt so bad, at such a young age, and if it's normal. The woman that is completely ridiculous and has rage and you can't figure out why she can't have self control, is probably dealing with Lyme rage. It's a real thing and can't just stop. 
• And my favorite thing I've learned is that having a disease does not mean I'm being punished and am living in sin. Not being healed instantly when someone lays hands on me doesn't mean I don't have faith. If anything it's the opposite. Cause through all this I still trust Jesus and I know He loves me and my faith is still secure. My faith isn't based off of what Jesus does for me, but who He is. 

All these things just make this season worth it. I wouldn't trade this season for anything. Because without this season I wouldn't have learned all of that. I wouldn't have meet Jesus in such a personal and intimate way. I wouldn't be able to relate with so many other people, in this way. I wouldn't know anything about the Lyme world. 

A dear friend of mine. One of the strongest, sweetest, kindest women I know once told me that ,"God chose you." He knew I wouldn't give up and He allowed me to go to a place seldom people ever get to see. And He's making a message and testimony and powerful God story out of it! I feel privileged that I get to walk this out and learn all that I've learned. Cause I'll never be the same again. In a good way. 

Whatever you are going through, learn all you can. This isn't wasted time. Don't try to get out as fast as you can. Let what you're going through bring hope and encouragment to others walking it out as well. Try thinking the opposite. There is good in this. You just have to look for it. 

Wednesday, July 30, 2014

Month 11(prt 1): Finding Positive

Well, I've been doing IV rocephin for about a week now. I'm in tons and tons of pain. But that's what happened the last time I did this one. The first couple weeks were pretty painful, but then symptoms started melting away. So I'm thinking that's going to happen this time. 

I saw Dr.N again today. All went well. My white blood count is totally back to normal. He is so surprised at how quickly it jumped back too. That's called the power of prayer folks! 

I'm staying on IV abx, same oral abx and a couple changes with supplements and herbals. Basically, we are working on my adrenals (exhaustion, headaches, needing salt on everything, vertigo, racing heart), babesia (headaches, heart pain/palpitations/irregular heartbeat, spleen pain, chest pain,eye sight issues, sweating), and borellia (I think mainly lower back pain). I'm also having a lot of GI issues, so he's trying to figure that one out. Guess we will see in the weeks to come what's going on with that.  

It's been like clockwork. The past three weeks the hiatal hernia has started causing issues on Sundays. And after I get adjusted Monday I have no issues till the following Sunday. Silly body. I'm thrilled the adjustments help though. 

Dr.N also suggested I start to see another Dr, along with him, for some hormonal imbalances. So that'll be fun... I hope. Haha. Lyme Disease is never just Lyme Disease. That booger comes along with parasites, sleeping issues, yeast, hormone imbalances, allergies... All sorts of stuff. It's like an onion. Got to keep pealing away layers. 

He also said I have color in my face and that he thinks I turned the corner! **mental happy dance** you should reread that last part a couple of times. I did :D

I love what I've been learning too! My thoughts and what I do with my feelings are so important. I've started journaling each day about what I'm thankful for, and what has been a blessing to me- it's a gratitude list. My goal is to look for the good and things I'm thankful for, instead of what could go wrong and what's completely out of my control. I may not be in control of a lot of things, but I am in control of how I respond to them. I can surrender the issues and put them in the hands of a God that can actually do something about them. He gives wisdom, peace and joy. 

 My emotions depict my thoughts which depict my actions.  

I mean I'm not lying to myself and making things up. I'm still reading my body and resting and taking care of myself. I just don't want to dwell on negative. I want to keep moving forward. I've noticed I've been more motivated and determined. I don't feel like LD controls my life, but that I'm moving forward and my goals are totally attainable. I have such peace. Thank You, Jesus, for being my Prince of Peace. 

Energy Expelled: It's been a long day so pain is just having a field day in my lower back, heart and spleen. My hands are done typing and I've got a nasty headache coming along. Yay for ice! 

Thankful for:
• Laughing with my husband
• The sound of rain
• Chocolate covered pretzels 

~ "I can see a light that is coming for the heart that holds on. There will be an end to these troubles but until that day comes, still I will praise You. Still I will praise You." 

Tuesday, July 22, 2014

Month 10(prt 2): Moving Along

It was another "exciting" couple of weeks with my health. I broke out in terrible hives (from the top of my head to the bottom of my feet) for almost a week. My hiatal hernia started causing some serious issues. My lab work came back worrisome. And my childhood dog, Jackson, passed away.  

My body doesn't really follow rules, but that's okay, because two can play that game ;) 

I'm pretty sure the hives were an emotional response to all the anxiety I was facing. The morning my family dog of 14 and a half years had to go into surgery I woke up with a HUGE anxiety attack. Like intense. After I went back to sleep and woke up I noticed a rash forming on my legs. And after a couple hours it just got worse and worse. To the point where my face had disappeared, the inside of my ears were covered and even the palms of my hands were a mess. I was super attractive to say the least ;) 

We waited it out a day and called my doctor. He proceeded to up some of my medications, take me off one and told me to wait it out. He also told me my white blood cell count was low. 

I freaked out! What the heck does that even mean? 

And the next day I started not being able to swallow anything. I was unable to even swallow my own spit without hyperventilating and crying from pain. I thought it was heartburn. So I drank baking soda water, took tums and pepto bismol, and was strict about my diet. Which none of that helped and I still had a sob fest everytime I swallowed. 

Finally Monday morning (2 days later) it dawned on Tanner that a year and a half ago I had an upper endoscopy and was told I had a hiatal hernia. I was told this could never bother me or could pop up one day and I'd need surgery. 

So I went to my chiropractor, Dr.M. He pulled my stomach down and I have not had any issues since! It's been a week of me enjoying swallowing and thanking my stomach for going back down. 

After that I got a phone call from the place that sends me my IV meds and watchs my bloodwork. They were VERY concerned about my vanco levels (the IV abx I was on) and my low WBC. They said they both dropped way too low in a week. Dr.N called right after that and took me off everything. He also told me he needed to see me pronto. 

Short Appointment Update: 
I see Dr.N next in a week and a half instead of a month. He is switching me from vancomycin IV to rocephin IV. I'm off most oral abx and on a TON of herbal suppliments. My WBC is better. Not back to normal, but not as low. So yay! But I have to see him sooner than normal to make sure things only get better. 

So what have I been learning? I think if I've learned anything from this season of life it's about people. I could write for days about this, and maybe I will write a post all about it soon... But... 
Going through Lyme Disease treatment is so so lonely. I don't see many people and I don't go many places. I mean, I'm  exhausted and I don't feel well. No ones fault. The people I was close with before treatment don't really talk to me much anymore. The friends and family I thought would walk through hell and back with me have deserted me or have become  "bored" after a few months. And I don't blame those people. This is super boring. There have been more hopeless moments than hopeful moments. I cannot fake positive change, and because of that, I think it's too depressing and scary for those who don't understand my life to understand what has really happened, and is happening. 

But you know what? The people that have stood by me and have walked this through with me, even on the most hopeless and boring days, mean the world to me. Those people have brought hope into dark days, spoken truth when all I heard was lies, and gotten angry at the enemy when I took more steps backwards than forwards. Those people have taught me how to fight for others and love others exactly where they are at. And they've shown me love and support and encouragment that has seriously gotten me this far. They've shown me the power in walking life out with people and the power in not giving up on them. I can't wait to dance with those people at my remission party! They are the ones that I know will be by my side through thick and thin. The rest of my life. Those people have gotten me this far and "thank you" could never be enough or show my true gratitude. 

They've walked with me and stood with me and loved me at the darkest of nights. And I can't wait to dance with them at the break of dawn. They deserve to dance the finish line with me. 

Energy Expelled: My hands hurt!!! Stupid arthritis. My feet and legs are screaming at me. I hate bartonella. And I just feel plain crappy. Ready for a movie and ice packs. Thank you, Tanner, for making this an easier read. 

~ "It is during the worst times in your life that you will get to see the true colors of the people who say they care for you." 

~ "When someone is going through a storm, your silent presence is more powerful than a million empty words." 

Tuesday, July 8, 2014

Month 10(prt1): Long Story Short

It's been a while since I've posted an update- did you miss me? ;) I've been so sick and tired and dealing with Lyme Disease drama that I haven't been able to post anything. 

I weekly have to get my blood drawn to make sure the vancomycin is in me and doing it's job. My first blood test came back looking like I had never even done the infusion before. The pharmacist said my body is detoxing it out so fast that it's not staying in me at all. Which can be a good thing that my body likes to quickly remove foreign things, but not so much in this case. So I was moved up from twice a day to three times (2 hours each time) a day of vancomycin. Lyme killin baby! 

The past two weeks have been a nightmare. Problems: My PICC area was bleeding and was leaking like crazy. The first time getting my blood drawn for vancomycin was done incorrectly and I had to do it again that same week. Solutions: Labcorp called and said they lost my blood. It took like 4 days to figure out the blood drawing issue. And I have to lay completely flat while infusing with my arm elevated. Plus I had to stop the Myers cocktail cause my veins were having issues with how thick it was. 

During the headache of all that I was in a panic attack mode. And due to that I got very ill. Even after I got all of it figured out my body was still so sick from all the stress. 

About a week and a half ago I started having vertigo. It was terrible! For four days I couldn't lift my head or really even move without thinking I was gonna die. 

Last week I saw my dr and he said my adrenals were shot. Which explained the vertigo, head pressure, motion type sickness, racing heart nonsense. I'm currently on things to help my adrenals, kill babesia, detox liver and kidneys, and kill bartonella. He did say I'm herxing. Which is good. Just sucks! I was given permission to skip doses if the herx is too much. I told him I can just push through and he said no, pushing through a strong herx does not make healing come faster. He said, "getting into remission is not a sprint, it's a marathon." 

Once I started the new stuff I've started feeling a bit better. I'm back to my "regular" symptoms of pain. Pain in my head, chest,heart,spleen,lower back,legs and feet. Honestly though, I would rather pain than that vertigo nonsense! 

I've been learning how important it is for me to stay stressed free. With the PICC issues, blood draw confusion, and increasing the vanco dosage- I was so sick! I'm so glad that that's all sorted out and I'm back on the track of healing! Just need to breathe and keep fighting through. 

Energy Expelled: Well, obviously it took me a month to find motivation to write this. Took me four hours to type out. My hands are done and my back is getting pissed. Gonna drink tons of water and take a nap. But first infuse, then a nap. 

~ Those that have walked with me through the darkest night will get to dance with me at the break of dawn. 

Thursday, June 12, 2014

Month 9(prt2):What Doesn't Kill You...

People say, "What doesn't kill you makes you stronger." At this point I think I can bench press a hummer. 

And the nonsense, dramatic, pathetic  stories continue. 

I tried starting my new IV antibiotic Wednesday morning. That didn't work out. My home nurse came over to change my dressing and hang out with me during my first infusion to make sure nothing went wrong. About 5 min into infusing, I noticed my PICC insertion area started stinging. She said it could be because of using it for the first time in a while. I then started scratching my head like crazy. I was complaining to her and mom how I needed a shower and how itchy my head was. I was shocked how itchy it was all of a sudden. Telling myself and them I possibly had lice and needed to shampoo my hair. I started getting hot and felt like my chest, stomach and face were on fire. I finally lifted my shirt up to find my skin was completely red! The redness spread up through my face, neck, ears, and head. It was itchy and hot! (If you can visualize this, I hope you're laughing). 

So of course, we stopped the infusion. Put some ice packs on me and took two Benadryl. My nurse called the IV company and they informed us I was experiencing 'red man syndrome'. Yeah, I'd never heard of it either. Basically, it's when vancomycin infuses too fast and you get a rash. A horrible rash. It's a reaction, but not an allergic reaction. And it's totally common. 

I slept the entire day away. Benadryl makes me exhausted. 

The solution? I was sent a device that will slow the infusion down to over a two hour time span (I do this twice a day) and take Benadryl 30 min before each time. For the next four weeks I will be sleeping or hooked to an IV. Haha! But hey! Sleeping=healing! 

I'll be trying the new plan tomorrow (Friday) morning. My nurse will be coming again incase anything happens. 

Today mom took me to my doctor's office to do a Myers' cocktail. I was so pleased it could be done through my PICC. I hate getting pricked. It tasted unpleasant and made me pee a lot. I haven't noticed a huge change. But I know my body is thankful for it. Good stuff to feed my body with. I feel like I had a little more energy today and am not as hungry though. I'll be trying to do those weekly.  

I feel like this Lyme Disease does not want to die and is pulling any obstical out of the book. But soon it will run out of ideas, and die, and I will be in remission dancing my face off! LD seriously doesn't stand a chance against a strong-willed Bekah. Plus, my God is stronger than any bacteria, infection or disease! Borrelia, babesia, and bartonella doesn't stand a chance against Jesus' blood. 

Energy Expelled: And there goes all the "extra" energy. I wonder if I can take a nap before bedtime ;) My hand is having some RA issues. I feel naseous, light-headed and dizzy. My legs are starting to hurt. And my spleen has been bothering me all day. And my PICC area... Whew! It itches and is bloatchy and burns. Can you believe one day I'll write under here "nothing"??!? I'll be healthy and blogs will be easy.

~ "Run when you can, walk if you have to, crawl if you must; just never give up." Dean Karnazes 

Monday, June 9, 2014

Month 9(prt 1): Fighting

Drama. Drama. Drama. 

My appointment with Dr.N was Thursday. It went fine, I guess. He put me back on Lyme Disease treatment. An IV antibiotic, 3 oral antibiotics and some suppliments. I have been relapsing because of being off Lyme treatment, but I should start back on the healing path soon again. 

He switched my IV antibiotic from ceftriaxone to vancomycin. He's very worried that my colon infection will return and come back with a vengeance. So this new one will prevent that and kill Lyme. My IV infusion used to be once a day for 30 min. Now it's gonna be twice a day for over an hour each time. Super fun, eh? 

My new treatment plan starts Wenesday. I can't start the orals till after I start the IV. Gotta have that in my system so the colon infection won't return. So my home nurse will come Wednesday morning and change my dressing and teach me about this new one. Dr.N said if the oral doxycycline doesn't sit well with my stomach he'll make it part of my IV treatment. Here's to hoping the oral doxy works great! 

I finally got the letter from my insurance company about what they are gonna do with me. And the conclusion.... They won't cover my Lyme Disease treatment. My blood test was not CDC positive and they don't believe long-term antibiotics will help me. It was pretty much the most discouraging letter.  

 I'm having a really hard time processing this. On one hand I knew it was coming, but the other, I'm still surprised. I feel like I'm actually a part of the Lyme Disease community now. Which isn't too grand of a feeling. Being misdiagnosed and undiagnosed for over two decades. Having my insurance company refuse to pay anything for treatment. Searching out an LLMD. Having to move in with my parents. Quit my job and school. Have negative CDC blood testing... Yada,yada- I'm a real Lymie now! 

I keep reminding myself that God is still good. He is still Lord. He works all things together for my good. He won't fail me. And this is not wasted and won't be in vain. God's up to something. I wouldn't be on this journey otherwise. He is stronger than Lyme Disease and co-infections. 

The "called to action" and "now that I have seen I am responsible" person in me wants to do something. I am so fired up! I don't have the energy to fight, but I am gotta do something. People are suffering for NO reason. And being denied by their insurance companies. Guess we will see what God's up to. But first, I gotta get healthy. Ain't no insurance company gonna steal my drive to fight. I will go into remission. 

Thank you all for praying and encouraging me. Thank you for not forgetting me and my family and supporting us through this. I can't say it enough. I know that's what's getting me through. 

Energy Expelled: Well, my spleen, back, headache, hand, and arm wasn't to thrilled to type this. I didn't have much energy to write this out and have even less now. 

~ " Because he bends down to listen, I will pray as long as I have breath!" 
Psalm 116:2 

Saturday, May 31, 2014

Month 8(prt 3): Random Ramble

Well, month 8 hasn't been my favorite. I'm still off all my oral antibiotics for Lyme Disease- which means I have not been doing Lyme Disease treatment in two weeks. I chatted with my dr a few days ago to discuss the gut infection situation. He said he can't put me back on LD treatment until we know for sure the infection is gone. Otherwise it can come back with a vengeance. I finished the gut infection treatment a few days ago and will see him Thursday. Giving me about a week, until I see him, to make sure the gut infection is positively gone. 

When I was talking on the phone with Dr.N I was explaining to him how bad my symptoms have been and he said I'm relapsing. Which totally sucks! I'm so frustrated cause just three weeks ago I saw him and he said I was responding and improving-but I feel like now I've lost all that. Pretty discouraging. 

Never thought I'd say this, but, I miss my IV and oral meds. Now that I'm relapsing I can look back on last month and see how they were helping. In the moment it was hard to see, but I believed Dr.N that I was getting better. And now that I'm off of them I can see the good change that was happening. I really hope I can start treatment again on Thursday! 

Something I've been learning recently is how important it is for me to take every thought captive. I struggle with depression, which I don't know if that's the disease or the fact that I've been cooped up in pain for 8 months. It doesn't naturally come to me to chose hope. If I don't focus on God's promises, prophetic words, and hope I can sink down fast. 

I've had to learn to focus on the truth of things and not the heaviness and doubt. I constantly have to remind myself that God's plans for me are for good, for me to prosper, and to live an abundant life. That God works all things together for good and His glory will be shown in and through all of this. That God does not like seeing His children in pain, but on the other hand He doesn't waste anything. 

I know that people can die from LD, and there can be perminant damage, and may never go into remission. But I just can't think like that. I have to focus on how God made me victorious, more than a conqueror, a co-heir with Christ, a warrior and a fighter. I know that God is good, kind, Healer, consistent in His character, unrelenting, and His grace is enough. I know that nothing is wasted in His kingdom, and He wouldn't allow this to happen and leave me hanging. And above it all I KNOW He loves me. Without a shadow of a doubt He loves me. I have to focus on these things. I have to focus on Christ, otherwise I sink. 

Focusing on the Truth of things and His character gives me peace. When I get away from that I get depressed, and restless. It's a choice I'm learning I have to make moment by moment. 

My pastor once told me to not be under the circumstance, but above it. And that's what I'm learning. I'm learning to thrive in this sitatation, not just survive it. 

Sorry this was a bit scatter brained and random. Just getting my thoughts typed out was a challenge. Lyme brain is hard to work through- but I'm trying. 

Today is the last day of Lyme Disease awareness month. Please take a moment to check out or watch "under our skin" 
Even if you think Lyme Disease has nothing to do with you, you may be surprised. There is valuable information in this documentary that will surprise you. Please get educated about Lyme Disease! Ignorance is not bliss in this situation. 

Energy Expelled: I am beyond exhausted. My typing hand is tight, cramping, and really sore. My vision is going in and out. The ringing in my ears is loud. Bad headache, leg pain, and back pain. 

~ "They will have no fear of bad news; their hearts are steadfast, trusting in the LORD." Psalm 112:7