Month 7: part2

Well, it wasn't that bad getting a PICC line put in. Not my favorite thing to do nor would I like to do it again, but it wasn't horrible. I think it was a little more painful than people told me cause my body wasn't responding very well to the procedure. The woman doing it had to numb me twice cause the first time I didn't go numb, and felt putting it in. Then my vein wouldn't take the line and she had to find another. I was pretty sore, to say the least, the rest of the day and a good bit today. But it's done! And it's in! And I'm okay! Jesus gave me a lot of peace. 

So blessed that my mom, husband and best friend A were there to support me and encourage me :) 

So, right after it was done the three of them walked up to me and gave me a funny face. Cause between the procedure being done and them taking 7 steps over to the bed I had formed a hive under my left eye. Just one! Didn't itch or anything. Just a random white bump on my face haha! The nurse wasn't concerned because it wasn't near my PICC line, and started getting smaller as fast as it popped up. Probably resulted from all stress I had built up. The nurse said, "You're body is kinda weird, but you're cute." 

God hand picked that nurse for me. She knew the severity of Lyme Disease. She didn't have it, but watched someone very close to her suffer and die from it. So very hard and sad to hear her story. 

The nurse came today to teach me how to give myself the treatment and such. I was not looking forward to this, but so ready to start feeling better. I took quite a few taurine before hand. It wasn't bad at all. Actually, totally easy. She comes again tomorrow to make sure I understand everything and am able to do it in my own the rest of the week. One day down! 

I'm still in shock it had to come to this and take this long to get proper treatment. I'm so thankful for God's peace. "And the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus." (Phil 4:7) It's God's peace that's getting me through. 

Energy Expelled: My arm with the line is SO sore now. Even more so than before. My hands hurt. Headache. My neck and back really hurt. Legs are so uncomfortable and achy. Okay IV, you need to work! Ready to walk out in remission. 

~ "But the Lord stood with me and strengthened me." 2 Tim 4:17

7th Inning Stretch

Oh boy! Am I being stretched these past couple weeks. When I went and saw my Doctor, the end of April, he informed me I need a PICC line. It was kinda a commical appointment, in a weird way. Right away when I walked in the room Dr. N started trailing off about how he's been thinking about me a lot. He then started saying how he might put me on a PICC line and need cocktail treatments (funny Lyme brain story: I thought he was talking about alcohol and I got excited because I've had one drink since treatment started. But then I realized he was talking about IV treatments. I could really go for a hard cider ;). He stopped after a bit and said, "Oh, I have not even asked how the past two months have been. I bet not well since I've thought about you a lot... But how's it been?" I then explained to him how the past month has been hell. He did some tests and came back saying I need a PICC line. 

He told me I remind him of the main girl from "Under Our Skin", the swimming girl. I asked if it was a compliment and he said she's pretty and had her 15 minutes  of fame.... Haha! Well, that's great!

I thought I understood the headache I was about to receive trying to get a PICC after Dr.N rambled and ranted for about 20 min on how to get it, but I was poorly mistaken.  I underestimated the size of the headache. In the past week and a half I have dealt with my insurance company, talking back and forth with my Doctor and a company to send me my medication, the hospital where I'll get the PICC, my insurance company, a home nurse company and my doctor office. At least a handful of times each. And they weren't short conversations either. 

Without saying, Trying to get this PICC line has been such a headache. Getting into the hospital to have it done, seeing what/if my insurance will cover anything (barely any), dealing with large amounts of paperwork, relating information from group A to group B and A to C and D... It's crazy. And to be honest, I don't understand most of this stuff. Insurance companies, and how to pay 4 different groups, and when to pay them, and processing so much information. Part of Lyme Disease is intense anxiety- I think I have that symptom down. But not really. 

At first I was totaling stressing trying to talk to these places, especially my insurance company. I just wanted to revert every conversation to Tanner. But he wasn't able to take every conversation. He has a job where they want him to work. So I had to figure it out on my own. It was trial by error. I actually feel kinda empowered now figuring all this stuff out. I mean, I feel bad for the people who have to talk to me with my Lyme brain, but I'm slowly figuring it out.

That's not to say they're not any less confusing or scary- but I'm getting my PICC line Monday so I must have done something right! 

I'll have a nurse come once a week to teach me how to do the IV meds. I guess I'll just add this to the list of medical things I've learned along the way. I feel like I should get an honorary doctorate degree soon! 

I was freaking out about the money of it all, having a PICC line, and doing the treatment myself each day. But then someone told me to picture PAC-MAN going through my veins and eating all the bacteria. I'm ready for some Lyme butt kicken and killin! Lyme Disease messed with the wrong chick! 

I am so disgusted at what Lyme has taken from so many people. The time, opportunities, jobs, adventures, relationships, money, education, and the list goes on.

These past couple weeks I've been so encouraged by the reminder that God is not gonna just restore what's been lost, but multiply it. Job 42:10 says, "After Job had prayed for his friends, the LORD restored his fortunes and gave him twice as much as he had before." That's the kind of God who loves me. One that doesn't just restore, but doubles it. That's hopeful! 

Energy Expelled: 4 hours to write. The usual sweaty hands, headache, dizziness, hand cramping, and my mom correcting my grammar. 

~ "Even though I don't know what Your plan is, I know You make beauty from these ashes"

6 Months: Where I'm At

Sunday is my last day of month 6 for my treatment and Monday I see Dr.N and start month 7 protocol. 

So how am I doing? Where am I at? How can you pray? 

Well, I never saw that "turn for the better" Dr.N was hoping I'd see. Actually, this past month has been really hard. Last month, month 5, was okay. I mean it was like the couple months before it. The "normal" pain and neurological issues. But this month was down right miserable. I even broke down and called my Dr to ask if I should go to the ER. My heart was hurting, like this piercing/tight/unable to breathe pain. And my chest was tight and I could barely breathe without crying. I was kinda freaking out. Dr. N said I was having a babesia flair up. This was due to the bartonella dying off and the babesia was "taking it's place" and becoming the top infection in my body. He said we were gonna have to attack it harder when I see him next. Whoopie! I guess we'll find out in a couple days what that all entails. 

He was really reassuring, which was super encouraging. He said the ER wouldn't know what to do with a babesia flair up. But he also told me he understood how extremely painful and scary heart pain can be and he hates when his patients call about it, cause he can't do anything on the spot.  He also said that when he saw me again we'll get it figured out and keep attacking the disease head on. The fight continues. 

I've been praying for encouragement lately because it's been so hard. I didn't know what that would look like, and I didn't have an expectation- just needed something. And God delivered. Over the past week I've gotten letters, texts, messages and spoons. Yes, spoons! 

I was given actual spoons from friends. How sweet and thoughtful is that?! They each have such a special meaning to me. I cried when I got each one of them. I have the spoons where I can see them all the time to remind myself that I'm loved. And that I can do this. 

It's hard to help a Lymie. That's why these spoons mean so much to me. It's not a generic gift, but something really personal and meaningful to where I'm at. I mean making a Lymie a meal is hard cause our diets are super strict. And hanging out with us is not easy. Some of us can't drive. We may set a date and have to break it cause it could be a bad health day. And if we say yes to one thing we probably have to say no to the next.

This pass weekend I was able to go to church and was bombarded by people telling me they are praying for me and being encouraging. People that are going through some really tough things went out of their way to pray for me and see how I'm doing. 

This week has been good for my heart. I love words of encouragement, and my spoons, and people laying hands on me to pray. 

It's also hard to receive it- and humbling. I want to be helping people I see struggling, but I have absolutely no energy to do so. I want to go find meaningful spoons for people and make meals, but no energy. I know it's my season to rest and fight for my health though. Because of that I started writing down all the ways people have reached out to me and ways I can help others. So when I'm able I can pass it on. 

Alright, I'm done rambling. Thank you, from the bottom of my heart, for praying for me and encouraging me. It's getting me through. Here's to month 7 and that "turn for the better". 

Energy Expelled: Three hours to write. Stiffness in hands and fingers. Massive headache. And the usual sweety hands. I wrote this at 3am. Haven't slept in four days. Sorry for the poor grammar. 

~ "Without hope I wouldn't be able to breathe..."

27 Things Learned.

Okay. I have learned a lot more than 27 things through this treatment time. However, I had to find a way to finish this list and 27 is a nice number. 

So here are some serious, random, not so serious, weird things I've learned since I started treatment back in September. 

1. Avoid putting lotion on your face while you are twitching. Your lotiony finger may end up in your nose or between lips and gums. 

2. There is always something beautiful to be found in the valley. 

3. Spoons do not grow on trees. Use them wisely and prepare to possibly pay later. 

4. Baking soda is the most brilliant thing to put in a detox bath. Makes me less shaky when I come out of the tub and reduces inflammation. 

5. Applesauce, all natural jello, and turkey bacon are an acceptable breakfast, lunch or even dinner. 

6. Don't compare your marriage to someone else's. Just cause you are chronically ill doesn't mean you have to have a sucky marriage. 

7. Focus on the people who care about you. Don't focus on the people who don't.

8. If someone didn't care about you before you were diagnosed with a disease don't expect them to suddenly care after you are diagnosed. 

9. My Dr wasn't kidding when he said I was shaking things up in my body. And he wasn't kidding when he said the treatment is worse. 

10. Some people really do have good intentions, they are just busy with their  own crap too.

11. People can't come along side you if they are dealing with their own tragedy and hardship. Doesn't mean they hate you, just means their life, at the time, sucks too. 

12. Intently look for good. 

13. Don't compare your disease to someone else's. Even if they have a lot of the same symptoms, it's all different. 

14. My body is not the enemy, Lyme is the enemy. 

15. It's "Lyme Disease", not "Lymes Disease".  

16. Taking out organs is not always the problem solver. 

17. Taking a bath then taking a shower is stupid. Just lay back down and wash your hair in the tub. Ain't nobody got spoons for that. 

18. Watching Netflix all day does not make you lazy. It means you're resting and taking good care of your sick body. 

19. Talk to yourself. Tell yourself you have made it thus far, this is not your forever, and one day the world will be yours again. 

20. Make a list of what you're going to do when you are in remission. Nothing is too big or small to be on this list. 

21. Remember the things people said, didn't say, did and didn't do. Good or bad. So you can use that when you're healthy to help others. Don't let the cycle continue. 

22. Appreciate the people that are walking this battle out with you. No matter how few there may be. Focus on those who are fighting with you, not those who "should" be. 

23. Nobody likes being around a victim. You are victorious and more than an overcomer. 

24. Be real. Be honest. Chronically ill folks are great at putting masks on, and faking it. Doing so only hurts them and benefits no one. 

25. Set your boundaries and hold to them. Don't be around large groups of people if you get over stimulated. Don't go to an action movie if loud noises hurt your ears. Don't be around insensitive people if it's too much for you. Don't go to a restaurant if they don't have food you can eat. Just because you made plans doesn't mean you have to keep them. If your body has had enough that's okay.  Dressing up is overrated. Sweat pants are perfectly acceptable. Your health goes first. 

26. Giving up is not an option. 

27. Just be thankful you can ______ (fill in the blank with whatever you are complaining about). 

Energy Expelled: Writting this post was difficult and exhausting, but it just added to how I've been. These past two weeks have been a nightmare. I feel like I've just been getting worse. I'm really looking forward to seeing Dr.N in a few weeks. I need a change. Can't keep feeling this way. I really covet everyone's prayers. 

~ Out of suffering have emerged the strongest souls. 

Everybody Needs Some

I started month 6 for my Lyme Disease treatment about 5 days ago. It's been miserable. Since I started this month I've been dealing with Lyme rage, anxiety, leg pain, arm pain, heart pain, spleen pain, and neurological issues like twitches, spasms, tremors, eyesight issues, dizziness, and such. I expect this to happen when I start new antibiotics and supplements though, cause I'm herxing. Hopefully this won't last too long and that 'change for better' Dr.N was telling me about will happen this month. 

This month I started a new antibiotic (taking 2 altogether now) and started 3 new suppliments (taking 13 altogether now). The supplements and antibiotics are focusing on attacking the cysts that are formed with the bacteria that are in hiding. 

Because it's been such a rough start to the month, I've been reading over a lot of pictures I've saved on my phone from Lyme awareness websites, and Facebook pages, and pictures sent to me for encouragement. And I wanted to share them with you. Some are focused on Lyme and others could encourage anybody. So I hope these will be uplifting and encouraging to you wherever you are in life. Lymie or not, we all need encouragement at times. 

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. 

HOW DO I LIVE LIFE LIKE THAT? 

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"?

BLAH....

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)

BUT GOD... 

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  

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 -http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/).

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)