Under Our Skin

Hello again. I have been wanting to post for a while, but my story is just too long and I didn't want to bore anyone with it. But it hurts my hands too much to write in a personal journal so I am mostly writing this for myself to remember all the stuff that is happening. So journal, here is what has been going on since my trip to Utah.

After my treatment for the Ehrlichiosis, I did not feel any better. I still felt so rotten. And I still had my fevers. After we got back from Utah, I was more lost than ever about my health, or lack thereof. Then this happened:

In June sometime I was on Facebook, and out of nowhere popped up an add about a documentary on Lyme called "Under Our Skin". I had heard about it. It won tons of awards across the U.S. and Canada. But I had never seen it. I ordered a copy. I can't tell you the feelings my husband and I had as we watched this documentary. We knew that this was what was wrong. We felt the spirit testify to us that this journey of Lyme had not finished, and that I needed help immediately. Finding a Lyme doctor is tricky. Insurance companies will not pay a cent for Lyme,. . .which is a whole other story explained in the documentary. I could not find a single doctor to treat my Lyme because they were afraid of losing their licenses, which is also another story. I kid you not, a conspiracy. (You must watch this documentary! You can check out copies of it at most Libraries.) So what were we to do?

Then my husband was on the phone at work with another insurance agent. This guy's best friend, Heather, also has Lyme and was getting treatment for it. She lives up the road from me here in Connecticut!!! I talked to her at once, and she told me of a doctor in New York that is the head of ILADS, an organization that does all of the most renowned research on Lyme Disease in the world!! He treats chronic Lyme!! I called his office, they said to get down there that day because it was crucial to get treatment as soon as possible. We found all of the answers that we were looking for.

Right now I am on an antibiotic that makes me sick as a dog. It's basically the same antibiotic I took in Utah times 4. I can't get off of the couch, and am in more pain than I was even before the meds, which I never thought possible. But that is a good sign. It means that it is killing the bugs. If you catch Lyme within a month of being bit, you can take a week of antibiotics and get rid of it. (So they say). But in my case, the Lyme has been working on my body for 10 years. It is in every tissue and muscle of my body. So there is some serious "die-off" happening. It is not fun. But every time my husband holds back my hair while I heave into the toilet, I ask my husband to remind me how lucky we are that we finally have a doctor that will treat this horrible disease. And we are.

This antibiotic is not doing the trick. It is helping, but we have to do a stronger, more intense treatment. I will have a PICC line (a permanent IV in my arm) in which I will inject antibiotics every day for a minimum of 3 months. A nurse will come and dress my bandage every week and do my blood work, and I will travel to NY every 2 weeks to see the progression with my doctor. I have done this treatment before, for just 4 weeks in Utah, which was nowhere near long enough. We had to stop treatment because we were up to $20,000 in medical bills for just 4 weeks!! Last time, this treatment worked really well. But as soon as I stopped, I was ill again within a week. We are hoping with an extended amount of antibiotics, we will be able to put my Lyme into remission. It will not be easy. My friend Heather got her PICC placed a few weeks ago, and she is so ill. I am so scared to go through with this. But my wonderful mama is coming out this week to help me through the worst at the beginning. The line will be placed on Wednesday of next week. Here we go!

I know that there a horrible things associated with antibiotics. Candida yeast overgrowth. . .which I already have...and other fun things. But that is the price you pay when you are a Lymie. Oh, speaking of price, my health insurance is not going to pay for a penny of my treatment. Which was the main reason we moved to Connecticut. Connecticut has a state law to cover chronic Lyme's Disease for no less than 30 days, including PICC line treatments. But, of course, our insurance company still found a way around the law. We will fight it, but I already know how it will go. Because we have been there before. Lovely. But when you get this sick, you will pay anything to get better. No amount of money is going to keep me feeling this miserable. I thought for so long that I was being selfish for that. Sacrificing so much of my families time, resources, and hard earned money just to make me better. . .when I don't do anything myself. But then I look at my son, and think of the mom I want to be for him. One that doesn't cry on the floor to her 3 year old to go get her some crackers so she can stand up. One who can play catch with him, and smile real smiles, without thinking about the next time I can have a pain killer to take the tiniest edge off the pain. A mommy that can be there for him, for what HE goes through. Not the other way around. Health is the most important thing for our family right now. And we will do whatever it takes to get us there. Then we'll leave the rest up to Heavenly Father.

Please take the time to educate yourselves about Lyme's Disease. It is becoming more and more prevalent every day. Please watch this short preview for "Under Our Skin", the documentary about Lyme. Thanks for everyone's support. I would not be able to do this without you.

Under Our Skin - Watch Movie