This Thing Called Lyme

Well, Scarlet was officially diagnosed with Lyme Disease on monday. Though it has come with it's stress, we're all doing ok. Especially the last couple of days. I supposed I've been so stressed out of my mind trying to get to the bottom of all this, that finally knowing she HAS it hasn't really made me feel much worse. There were some tears the day I finally found out, but not an overwhelming amount. I wasn't able to tell Greg until he got home from work and it was like all the sudden his face looked just how I've been feeling the last three and a half months. Since her symptoms haven't been overwhelming and he doesn't really see them like I do (since I'm around her 24/7) he's figured she was fine this whole time. He was really supportive through all my research and tests I wanted to do, but he never was concerned much. And then when the final diagnosis happened his face changed. And then the big decision was what to do next. We got a great recommendation of a doctor only 30 minutes away, but his waiting list is 350 people long. Then it came down to my sister's doctor in Seattle or THE leading lyme doctor in Lyme, Connecticut. Both very great doctors but FAR AWAY. That means major bucks and time for traveling to and fro. Then there was one more option in DC, but we don't know much about her. Just that she specializes in tick born illnesses. So there was the debate- go to someone we trust whole heartedly? Pay the sacrifice for a definite cure? Or try someone that will likely work out, but who knows? Anyway. I hate not knowing things. I hate not knowing what to do. And then I realized not one option was swaying me more than the other so I thought, "Maybe since we're not feeling impressed either way, any one of them will be fine and successful." So I figured, why go through extra pain, let's go to the one in DC. Instead of a day long flight, each way plus hotels, why not a quick 40 minute drive there and back, only one day off work for Greg, or one stressful day with me and two kids. So much more doable and affordable.

It's so ironic to be here, where lyme docs abound, but no one will see her because she's a kid. People won't touch kids with lyme. It's really a sad thing. Even the doctor we decided on only sees 2 year olds and up. Technically Scarlet is too young, but I'm guessing it's ok, or they didn't notice in the forms we filled out. She'll be 2, two months after her appointment.

Through all of this I keep thinking, "I'm so glad we have our savings." We've just been stowing it there for when we want to buy an SUV towards the end of the year. It's already cost over  $1000 just to get her a diagnosis. Besides the costs, it took a lot of effort. 3 different doctors. 3 different labs. THREE AND A HALF MONTHS. But honestly, that is NOTHING compared to most people's journey with lyme. Most people spend multiple thousands and see endless doctors before they get properly diagnosed. So really, we are SO FORTUNATE to have been able to catch and soon treat this so early. I'm wondering if our insurance will cover any of it. We'll just have to see. Most companies, I understand- DON'T when it comes to lyme. And the first appointment alone is $750. The second is $500 and after that they're all $250. And it seems they like to see you every month and then eventually every 2 months. Each doctor varies, but it seems they're all crazy expensive. And then the labs. At least this time a doctor will be ordering them and not me. I'm pretty sure I ordered unnecessary labs because I didn't really know what I was doing and didn't want to miss anything. But oh well. Too late now. Like the stupid tick test. I guess they only test for one strain of lyme and there's over 100 just in the US. Sort of a pointless test. Didn't realize that until after we sent it off. But I think I still would have done it, just to know. Even though it didn't do me any favors.

Right now the biggest change is her diet. Dairy, sugar and gluten are all BAD BAD BAD for lyme. It just loves all those things, apparently. This proves to be difficult when your toddler loves to chug milk and pound cheddar cheese more than anything in the world. We already have a hard time keeping it under control and suddenly we have to off her- just like that. And what toddler doesn't snack on crackers? Bye bye little gold fishies. And that sale where I stocked up on animal crackers is now wasted. Oh well, Greg and I will eat them. So much for home made bread. And I don't just feel bad not giving her sweets- but that was one of our favorite activities! Now we can't do it! It stinks! And Greg and I have to live this diet too- at least in the day time. We can't just have things lying around and be like, "Sorry Scarlet. You don't get to enjoy life, just Dad and me." And today I was so hungry and just wanted to stuff myself with something bread like. That's filling and easy to eat and I couldn't do it. It stinks! I feel kinda guilty eating chocolate by night, while I tell Scarlet no in the day. But soon enough I'll have sweets for her. I just need to look over a few recipes and go shopping.

The good thing about it all is that using agave or honey instead of sugar and thinking about other food options isn't as wild an idea as it would've been a year ago. I feel so much more prepared than I used to be. And even making "healthier sweets" has been on my mind a lot the last few weeks. Like making cookies with whole wheat, replacing the butter with coconut oil and the sugar with something else. You know, something along those line- so I'm not feeding my body with toxic crap as much. If this were to have happened even a year ago I would have been so overwhelmed, not knowing where to begin and being so frustrated with the changes and adjustments in diet. But slowly over the last year I've been working towards it, and especially the last month. It just naturally happened. So I'm just really grateful I'm here now and not like I was a year or so ago, when all of this would have been too much for me to handle.

The other good thing is she should definitely be able to rid herself of this disease. One, because we caught it so early. Two, kids are more resilient. As much as I hate that my sister and her husband are sick, if they didn't know what they did about their disease, I never would have known anything was wrong and been wondering what the heck was wrong with my child- years from now when the disease would have much more a hold on her body. But even still, I've been surprised how quickly it all HAS come around. I don't know if that's normal for kids because they have little bodies, or if the lyme she caught is really aggressive or if it's just normal all around. I have no idea. Like, who knew her joints would hurt so quickly and the first sign (the fever/flu) usually happens within weeks- but hers was within 24 hours. Really quick. And she's tired a lot. It's becoming more and more obvious. It's not normal. She's just not completely the same since we came here. It's not like her life is horrible. She's still a really happy kid and has her moments where she runs around and plays- but it is not the norm. She just has her days and you can just tell something's wrong. Like she just doesn't feel good. The one thing I worry about is she IS such a good tempered kid, it make me worry what she doesn't tell us. Like she's feeling a lot worse than she's letting on because she never complains. I don't know.

The one thing I AM glad about, as much as it makes me sad she feels sick, is her brain. Lyme can get in your brain and mess all kinds of things up and I'm pretty dang sure that isn't happening. At least as far as I can tell. She seems totally with it there. She's learning more words everyday and communicating better and better and singing songs better and better. Things like that, where I would THINK that would slow down, if something was wrong. I suppose I could be wrong, but I really don't want the lyme to work it's way up there. That would be bad.

I can't say enough how glad I am that she CAN communicate so well. It's really weird, just a few weeks before her elbows and knees started hurting I kept feeling impressed to teach her the word hurt. I'd been wanting to anyway, because every time I wasn't sure if she was teething or not I'd think, "I wish she knew the word for pain and I could ask her if her teeth hurt." But then I wasn't sure how to teach it to her, because she never DOES get hurt. Anyway, somehow just a few weeks prior she learned those words and I don't know if I would have caught on, on my own, without her pointing and saying "owie" and "hurt".

The thing that sucks the most is people who don't get it. I suppose I'm getting over it now. It's like I never wanted to talk about it before because nobody gets the severity of it- AT ALL. To everyone else it's like the chicken pox. Like, "Oh you have the chicken pox. That sucks. But it's gonna go away, no permanent damage." So not true. The more I think about this disease the more I feel like it compares to cancer in so many ways. And I have a sister that just survived cancer so don't think I'm being insensitive or really stupid. No one would say, "Oh you got cancer- that's too bad." It's a big deal. Everyone knows it's a big deal. You don't pretend it's not a big deal. No one bats an eye at lyme. You can get so many different types of cancer, in so many different ways. The way you TREAT these cancers vary. The way it effects your health, varies. It all depends. And then the big question, did it really go away? Is is going to come back? Lyme is so the same. Most people don't know they have it until it's way in their system. It manifests itself in different ways. Some people get weird brain things happening, some people look totally normal but are in SEVERE PAIN all the time. Some people lose bodily function and end up in wheel chairs. It's all different. Lyme is smart and adapts. It can hide and not show up on tests. You literally have to change your treatment plan as it changes inside of your body. My sister and her husband have to fly across multiple states to get to this ONE doctor and have IV treatment every 2 months. It so reminds me of chemo. I mean it's no the same thing going in your body, but the process it the same. Sitting there while you're pumped with medication. They experienced these horrible HERX reactions in the beginning as the disease was being fought off. My sister is just now weaning herself off treatment (after a year and a half) to see if her symptoms come back. Her husband's treatment plan is 5 year. YEARS, people. It is not a simple disease and it does not have a simple cure. It's a horrible disease. The medical community is in complete denial about all of it. There are really only a small group of doctors who are active in supporting those with lyme disease and acknowledging that people are sick.

Most of the information out there is FALSE. Even people WITH LYME, I'm finding don't know as much about their disease as I DO and I don't have it. Like it can be transmitted sexually, from mother to child and through breast milk. No one knows this. And if you go to official doctor/government websites it says the opposite of this. It also says you need 2 weeks of antibiotics and you're good to go. So false. SO FALSE. Maybe if you catch it right away. My sister got lyme disease from her husband because they didn't know he had it, and once they DID find out, it still took awhile to be informed she could get it that way. People don't know this! Can you imagine how many people are infecting others because they don't know this?!?!?! It's a little terrifying to me. But I will tell people this and they give me a weird look and say, "Are you sure? How do you know that? That sounds strange to me." And I just want to say, "MY SISTER HAS LYME DISEASE! THIS IS HOW SHE GOT IT! What more information do you need?" And then one person was like, "Are you sure she didn't get it a different way?" Man, why are people in such denial about this disease?

And WHY do people think that ticks with lyme can't transmit it to other ticks and fly away on birds or scamper away on squirrels from town to town, state to state and migrate their way across the US. It's NOT that crazy of an idea. It just takes time. Nature can change, nature can adapt. We've seen it many times. Why are ticks the one exception? They're not. It's all so stupid. Lyme can be anywhere. It's not like a squirrel or bird is crossing the border then the tick goes, "Oh this is my stop, I can't go passed here" and hops off. Every doctor or website would tell you Lyme doesn't exist in Oregon or that the risks are waaaaaaaaay low. Clearly, not that low.

You can get lyme disease from any tick. You can get lyme disease and not have a bulls eye rash. Most people DON'T get the rash. Scarlet didn't.

The thing that bugs me the most is every website and doctor that isn't lyme literate says that the tick has to be engorged and on the body more than 24 hours to infect somebody. So where was this study done? I mean to call it FACT means someone had to have actually TESTED this theory. Otherwise it sounds like someone just decided that made sense to them and now everyone calls it fact. Because I've never heard of a study to confirm this statement. Clearly someone just said it one day and everyone agreed. DUMB way to base science, if you ask me. And clearly, since it was on Scarlet less than 12 hours and was NOT engorged- um . . . yeah that's all a big load of crap.

Anyway, basically everyone is misinformed and it makes it awkward talking to people. Yesterday I was thinking, "I just don't want to talk to anybody about it that hasn't seen Under Our Skin. Once they've seen that, they can talk to me about it." It really explains magnificently the misconceptions and realities of this disease. If you know someone that has it, and I suppose if you're reading this blog then you do- it will really depress you. I pretty much bawled my eyes out because of Clay and Danielle, when I watched it a year ago. They match up with the girl that works for U2, as far as their symptoms go. Like you would never know they were sick, but they're in a lot of pain. Or were before they found Dr. Marra. My sister and her doctor are the only reason I know ANYTHING about this disease. She worked so hard to get to where they are now. And now they're finally feeling better. This whole process has been so eye opening to what they've gone through- even though I still know I don't have a clue. It took them years to get where they are now, not a few short months like me. I can't imagine the pain they've felt. It overwhelms me.

Anyways, we're actually feeling really good and positive about the whole thing. That can change in the blink of an eye, I guess. We could go to DC in a month and have a bad experience and think, "Man! We just wasted a MONTH! Now we have to go to someone else and start all over again!" That would suck. But for now we're keeping the faith and saying our prayers and hoping for a successful treatment!

BTW her first appointment is just 4 days before the baby is due. Let's hope he's still in the oven then. It's like the complications never end. Pat, Greg's Mom, wants to do a family fast this sunday. I know there's a lot of preggers in the fam right now (me, being one of them) but we could fast sweets or something else. I would say we could fast on the first, because it's actually fast sunday- but Pat has surgery right before and I doubt fasting is on the ok list, right after back surgery. Feel free to join in!

BTW- thanks to all who are praying for us. I remember when I had my first miscarriage I could literally FEEL people's prayers. It was a strange thing and I couldn't explain it. I could just feel people's love and strength and I could feel the effect of their prayers on me. That is exactly how I've been feeling the last 2 days. So thank you to everyone. Thank you very much.