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 :) 

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. 

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 

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.