And she's down....

I am going to warn ya ahead of time. It's been a REALLY hard week both physically and emotionally. I have read about a lot of my friends getting to this place, but I had never experienced it until this point. Physically, I am feeling worse by the day. Thankfully, I had a phone appointment with my doctor's PA on Tuesday morning and we are going to change some things up. She said that my quick decline when I was off antibiotics and all of my symptoms (electric shocks, numbness/tingling, chest pain, heart palpitations, bone pain, cognitive issues, anxiety etc.) are a big sign of the co-infection Bartonella. It helps that I have a couple of visible purple streaks on the sides of my hips. No, they are not stretch marks, lol. :) That is one of the signs of Bartonella. Lovely! :) We had always suspected that, but it was good to have it affirmed by the PA.

The reason why I had such a flare is I had been off IV azithromycin for about a month while we got my new supplies ordered by my local doctor and also we were waiting on my new infusion company to send us our order. It was nice to not have to do IVs for a bit, but I declined very rapidly. My PA said that Lyme symptoms usually take a couple of weeks to reappear when you are off antibiotics, but Bart happens very quickly. So, that was another sign to her that this is probably playing a big part in why I am so ill. She is going to be putting me on oral Rifampin along with IV azithromycin and oral amoxicillin. If I do well, with orals, then we will move to IV Rifampin. I will fully admit that I am pretty nervous to start Rifampin. I have heard some crazy horror stories of crashes on it. I haven't met one friend who survived this medication in the beginning stages with little to no symptoms. The symptoms they did experience would scare almost everyone. So, I will refrain from actually typing them in order not to scare myself. :P I really can't afford to crash on this med with my current schedule. I am barely surviving as it is. So, if you could pray for God's protection in a major way, I would appreciate it.

Also, it's been a rough week emotionally. I just feel attacked on pretty much every level. My guess is it's due to Bart because it can really mess with things in your head both physically and emotionally, but it's been a big struggle to keep positive, hopeful and to find peace. I am not sleeping well at all which doesn't help things. I am just sad and tired and when I look at treatment and talk to my friends, I really don't see an end in sight. Brian and I did our finances and we can afford about 5 more months of IVs. That scares me because that means we have only that amount of time to hit the bugs hard. After that, we are back to orals which I never do very well on because of my stomach issues.

We also have a huge prayer request. Tonight, I had an allergic reaction to the heparin lock flush that I have to use in order to keep my IV port from clotting. I use it once a day at the end of my IVs. Recently, we had to switch to a new company (the ZR Flush by Excelsior) because the heparin flush we were using by Tyco/Kendal was out of stock until mid-year (or so we were told by a medical supply company). Thankfully, I had one last one of the old version and was able to re-flush my line with the stuff I wasn't allergic to, but now we are completely stuck. If the company is out until mid-year, then we are going to have to find something else that works. I think I might know of one other brand, but I am not sure. Whatever we do, it's going to put a hault on treatment until we find something, order it and try it, which will cause me to once again to lose ground.

I have also had a lot more trouble completing my school work. Writing has always been one of the things I was good at. I would complete a paper for a class and have Brian just read over it. He would only find a couple punctuation errors. I didn't struggle at all last semester. However, since I started school a couple of weeks ago, when he reads my papers, he finds a ton of errors. Brian even had to help me with this blog post. This is devestating for me. I have to make it through 3 more grad classes (2 this semester and one this summer). I can't afford to decline that much cognitively. I have to be in school so we can pay for my treatment. This is really hard for me to deal with.

We are also feeling the financial pressure as my treatment funds are running out and if I can't do treatment, then I will stay sick. Ugh! However, God has always provided and that is about 5 months away. So, we are just going to pray that God miraculously stretches our finances. Thankfully, we are paying a lot less than we were at my old clinic which is why we have those 5 months instead of 2. Our regular monthly budget doesn't help the cause either. Did you know we spend about $600 per month just on my groceries? I have severe food and chemical allergies, and we have to buy everything pretty much organic and very specific items. Then, you add that to what it costs for all of my supplements/medications and allergy treatments and we are up over $1000 and that doesn't even include IV costs and doctor's appointments. Have I made you gag yet? It's pretty crazy! So, now you have a picture of the pressures that are on us. Oh geesh, I am crying as I type this! I am usually not this unstable. I hope this gets better with the new meds and not worse! This is not fun!

Brian and I just really need prayer. We know we are going to make it, but we are so drained. It's hard when you don't ever see the light at the end of the tunnel, you have the looming burden of finances that truly affects your chances at getting well, the pressures of school when you aren't thinking clearly and you just go through the same "sick routine" each day sometimes getting worse, but hardly ever seeing glimpses of better. It's hard on Brian as he has to carry all the household responsibilities, take care of me, work on completing two classes and studying for the CPA exam. On top of all those things, we seem to be running into roadblocks every way we turn.

Okay, I probably sound dramatic and for those who don't have Lyme or a long-term illness it's probably difficult to understand all of these thoughts. Lyme Disease patients are all constantly searching and hoping for a cure, trying everything we can to find something that works, but never knowing whether we will be that "success story" that everyone strives for. I wish with all of my heart I could say I was doing better, but unfortunately as of right now, the answer is no. We want to say yes because then life could quit moving on without us, but unfortunately it's not our time yet. So, a message to our family and friends...Please don't give up on us. We love all of you. I don't exaggerate my symptoms or make them out to be more then they are. I would love for them to be less and to not have to experience so many scary things on a daily basis. However, I can't change it. This is a real picture of the fight we face each day. So, if we miss big events, can't call or text, or don't write on a weekly basis, it's not that we don't care, it's just that we are trying to survive. Believe you me, when I am well, we will be showing up at your doorstep unannounced and ready to catch up on all the stuff we missed out on. So, be ready! :)

I write this blog so you can get a true picture. This is the battle of a lifetime for us. When you think about it, just lift us up in prayer. God can work in mighty ways through prayer. We have seen it firsthand every week. Along with all of the health (physical and emotional) stuff I listed above, please be praying for Brian. He takes his second section of the CPA exam this coming Friday. I have confidence he will rock the test, but I know it's been a stressful month. Please pray that God would give him extreme clarity and peace as he takes section #2.

Finally, on a much more upbeat note, I have finished and posted the bracelet that was made in my friend Candice's honor. As I mentioned before, she is an amazing girl who is like a sister to me. Her support and encouragement has gotten me through this past year. She is extremely sick and struggling to afford treatment. All proceeds from the bracelet titled "Shades of Optimism" will go to her treatment costs. Make sure to check out the other bracelet styles too!

Here is the link to "Hope Creations" product page: Products

Below is a picture of the new bracelet style! Have I mentioned before that I love pink?!!

Well, that's it for now! Sorry, this wasn't a normal cheerful "always find the good in things" post. It's just been a rough couple of weeks for us; however, we'll make it. We always do! We will just have to work harder to fight off the discouragement, but thankfully, the Lord will have the victory and if He can be glorified more if I am sick, then we obediently surrender to that call no matter how hard it gets. Know that you are in our thoughts and prayers!