Monday, February 24, 2014

Let's Talk About Fear

Even though I would totally describe myself as an open-book, there are things I just don't share with people. Maybe it's pride. Maybe it's cause I should be choosing joy. Maybe it's cause I want to be strong during my battle so people can be inspired by me. Whatever the reasoning is, I need to let it go. Starting this blog I promised myself I would be real and honest about how it is to walk through chronic Lyme Disease. I want to be a voice for those who are suffering all over the world with this despicable disease. I want to be so real and honest that people who don't have it can understand at least a sliver. I want this unknown world to be known about. I want people to understand the severity of the disease. 

So I'm going to talk about fear.

Recently, I've been allowing myself to be honest about where I'm really at. Not just how I'm feeling physically but how I'm REALLY doing. And I've come to realize I'm terrified about my future. And before you start typing up as many scripture verses as you can to send to me about fear, please keep reading. 

I'm terrified that I won't be able to have children. Not just because I physically won't be able to, but also because I could spread Lyme to my baby. Through either the womb or breastfeeding. I could take antibiotics during the pregnancy to lower the percentage of my baby getting Lyme. I could take antibiotics while breastfeeding to lower that chance as well. But do I want to go through that hassle? I can have my baby tested for Lyme the second they are born and put them on antibiotics. Again, the hassle? And even if my baby doesn't get this disease, I could flare back up cause of the pregnancy. So then I'll be pregnant, living the way that I'm living now (symptom wise) and when the baby is born I go straight into treatment again. Yes, adoption is totally an option. But I could adopt a kid that already has Lyme and have too deal with it anyway. 

I think what scares me the most is treatment again. No Thank You!! Not only do I not want to ever go through treatment again I don't want my Lyme to flare up again. I'm terrified of Lyme Disease. I'm terrified I'll stress out in the future and symptoms will come back. I'm scared that I'll get bit and go through all of this again. I'm worried I'll be so terrified that I'll scare my children and husband out of living life so freely. LIKE THEY SHOULD! Plus I'm scared there are symptoms that I'll never be completely free and cured from. Things that are too damaged in my body. 

About that whole it flaring up thing. How does that work? Stay stress-free. Don't let your lymph nodes freak out. Stay out of "fight or flight" mode. Don't worry about anything. 


Tanner and I are both planning on being full time missionaries and starting our own ministry one day. How do I remain stress-free doing that? Can I go back to college one day? Can I have a full-time job? Can Tanner and I share responsibilities or will he have to do more so I can "stay calm"?


Something else I think about is "who am I"? Like not passion wise but mentally-emotionally-feeling wise. Most Lymies are able to talk about how they were before Lyme Disease compared to now. I don't have that. I've had this disease from at least a year-old. Probably born with it. I have no comparison. Am I the overly passionate, emotional person I think I am, or is that Lyme? Am I really high-strung and easily stressed out, or is that Lyme? Am I really moody and have mood swings like a roller coaster, or is that Lyme? Do I have anxiety and depression, or is that Lyme? I've learned to live with most of this. I've actually learned to use most of this for the Glory of God. I like the things I've accomplished because of some of these things as well. I've learned to use it for my well-being and just accept it. How will this work in the future if this isn't who I am? Do I need to relearn who I am? A friend of mine described it like getting your arm cut off and being told you now have to learn to write with your feet. The problem: I only know how to use my hands. I don't work well with my feet. 

And here's the thing, I'm not the only one who thinks these things. God has so perfectly brought a couple people into my life who are in the same boat as me with treatment for chronic Lyme Disease. And we share mutual fears. Plus I'm on Facebook support groups and this kind of stuff pops up a lot. I've talked with my LLMD about a lot of this and he said he doesn't know. Everyone is different and we'll have to see. It depends on how my treatment goes. And to be honest, I don't like this answer. I want an actual answer. 

(I'm sure some of you were expecting this next part because my King is so good at this)


And when I start to freak out about all of this I hear God. And I don't mean faintly, whispering, in the back of my head. I hear Him gently, but boldly say, "Be still, and know that I AM God." 

I'm learning to renew my mind with truth and pray until it moves from my head to my heart. Because the truth will set me free. I can't keep living in fear and doubt and worry. I'm called to live life abundantly. I know God is bigger than Lyme Disease. I know He hasn't left me yet, so why would He now? I know that His grace is enough. I know that no matter what happens I am still loved and adored by the King of kings. I know that God's plans for me are for good and for a future. And I know that His glory has shown through my Lyme Disease in a way that brings me to my knees. Why wouldn't He continue this? This is all in my head though and slowly moving into my heart. 

Now I'm going to share with you all of those verses about fear. The verses I'm filling my heart and mind with. The verses that will set me free. 

2 Timothy 1:7
"For God did not give us a spirit of fear, but a spirit of power, of love and a sound-mind."

1 Chronicles 28:20
"David also said to Solomon his son, "Be strong and courageous, and do the work. Do not be afraid or discouraged, for the LORD God, my God, is with you. He will not fail you or forsake..."

Psalm 56:3-4
"When I am afraid, I will trust in you.  In God, whose word I praise, in God I trust; I will not be afraid. What can mortal man do to me?"

 Isaiah 41:10
"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 righteous right hand."

Deuteronomy 31:8

"Do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you; he will neither fail you nor abandon you.”

Isaiah 41:13
"For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear; I will help you."

1 John 4:18
"There is no fear in love. But perfect love drives out fear..."

Psalm 23 
"The Lord is my shepherd, I shall not want. He makes me lie down in green pastures; He leads me beside quiet waters. He restores my soul. He guides me in the paths of righteousness For His name’s sake. Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me; Your rod and Your staff, they comfort me. You prepare a table before me in the presence of my enemies; You have anointed my head with oil; My cup overflows. Surely goodness and lovingkindness will follow me all the days of my life, And I will dwell in the house of the Lord forever."

1 Peter 1:6
"So be truly glad. There is wonderful joy ahead, even though you have to endure many trials for a little while."

1 Peter 5:10
"In his kindness God called you to share in his eternal glory by means of Christ Jesus. So after you have suffered a little while, he will restore, support, and strengthen you, and he will place you on a firm foundation."

Psalm 27 
"Yet I am confident I will see the Lord’s goodness while I am here in the land of the living. Wait patiently for the Lord. Be brave and courageous. Yes, wait patiently for the Lord."

Psalm 91:1-6
"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."

These are just a few. I'm writing these, and more, on sticky notes and filling my room with them. To renew my mind. I can't live in fear anymore. It's going to rob me of enjoying every good thing God has planned for me. And I dont want to miss out on the best cause I'm fearing the future. I'm looking forward to seeing how God's going to redeem this. Cause He's always in the business of redeeming that which the enemy has tried stealing.  

Energy Exoelled: Took 3 hours to write. My left hand fell asleep typing. And my right hand is now stuck cause the joints are tight. The ringing in my ears are pretty bad and I have a bad headache because of looking at the screen. BUT I feel refreshed :)

~ Hardships often prepare ordinary people for an extraordinary destiny.  
C.S Lewis  

Thursday, February 13, 2014

Month 5: Update 2

I apologize that I have not written in a while but, honestly, I havn't been very motivated or had the thinking skills to do so. I've been "busy". Not most people's busy with school and work, but my busy. Like people coming to see me, taking a shower more than every few days, going for car rides longer than 20 min, exerting any kind of energy without having a full day to rest.

I have to plan ahead for rest. If I have plans for Tuesday I then have to plan time for rest Monday and Wednesday. Exerting any kind of energy uses up spoons (if you don't know what I'm talking about then you should check out the "spoon theory". It's a great explanation for how chronically ill people live with lack of energy and fatigue -

I'm over halfway done with month five of treatment. This month has had a big focus on detoxing. When Dr.N said I wasn't detoxing the way he had wanted he placed me on additional supplements to encourage the process. Detoxing makes me exhausted, which normally is frustrating because I tend to not sleep. I feel as if I physically cannot do anything with these levels of fatigue. I am on a natural supplement of taurine which has helped to counteract the anxiety and levels of stress I experience when trying to sleep. So now when I'm exhausted I can actually rest. 

Because I've been sleeping better at night and taking lots of good naps during the day I've had more energy. I don't know what to do with this new energy though. It's not energy where I want to climb a mountain, but energy where I can walk up the stairs alone. Because of this energy I try to do things, but then I pay for it the next day.... Sometimes even a couple hours later. 

Fun News: I cleaned my bathroom for the first time in months! It was the worst job ever and I didn't touch the tub or floors... But I did something. I felt more human and capable. I was thourghly exhausted for a couple of days, but hey! It's a little bit of improvement! 

The first week of the new medication protocol I felt a noticeable change in my joint pain.  The pain seemed to be decreasing.  I'm on Plaquenil, which is used for people with arthritis, which makes sense as to why the pain was decreasing. But this medication is also used to kill the spirochetes when they clump together into cysts (trying to protect themselves from being killed). I was so enjoying the pain level not being so high, but after the first week it went back to normal. A little frustrating. However, at the same time it gave me hope of what my pain could feel like one day.

The taurine my Dr. put me on has been my lifesaver. It has helped with my mood swings, rage, anxiety, OCD, sleeping, and irritability.  When I start going a little crazy my family gently tells me to take a pill ;) It adds humor, which is medicine for any sickness.  It had also really helped with sleeping. I used to lay in bed till about 2am, when I'd finally start to feel tired. Now, I start getting sleepy around midnight. I'm not waking up as much (just like 6 times a night now), sleeping longer, and taking more restful naps during the day. 

Exciting Changes: My pain in my joints, spleen, heart, and chest has gotten better. I still have constant pain, but I don't have as many moments of debilitating pain. 

Not So Exciting: I feel more run-down, achy, nauseous, and blah- basically, I feel like I have the flu. The ringing in my ears is horrible and I'm super sensitive to sounds. This is causing a lot of headaches, migraines and pressure in my head. My skin, down to my bones and muscles, is also super sensitive. Did I mention naseous? Food sounds like poison to me. 

The past couple of weeks I've been feeling okay. My symptoms were tolerable. But over the past few days my symptoms have been going back to normal. But we think it's because I'm "cycling". Lyme Disease goes through cycles of when it's "tolerable" and "miserable". It seems for me every couple weeks there is a change in my pain level. Like for two weeks I see good changes with pain, sleeping, mood swings, and headaches. But then the next couple of weeks I feel like I go back to normal. 

So, there is a little update on me. In about a week and a half I will be starting month 6 of treatment. Hoping to just see a continuous good change in my symptoms. 

If there is something you want me to explain better or write about please let me know. I'm lacking creativity, ideas, and motivation. 

Energy Expelled: Took me 2 weeks to start writing. And 4 days to write this. I was halfway done and got super overwhelmed and anxious with thinking, staring at my screen and the ringing in my ears. 

~ H(hold) O(on) P(pain) E(ends)