Thursday, June 12, 2014

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 

Monday, June 9, 2014

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