Wednesday, September 24, 2014

Month 12 (prt 2): Not Mine

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

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

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

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

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

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

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

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

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

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

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Tuesday, September 16, 2014

One Year Down

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Giving up is not an option. 

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Friday, September 5, 2014

Month 12 (prt1): Get Back Up

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

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

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

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

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

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

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

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

~ This is not the end.