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. 

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." 

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." 

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. 

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 

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 

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 ilads.org or watch "under our skin" http://m.youtube.com/watch?feature=youtu.be&v=CVzXsKvN2ck 

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