Wednesday, June 26, 2013

3:37 am

Good morning to those of you who can't sleep like me. I must suggest having some decaf green tea and a maple glazed gluten-free donut for not feeling sorry for yourself at 3:37 in the morning. I was out of chamomile tea-quite an accomplishment as we have 25 boxes of tea in the cabinet, but I wasn't about to dig around and pull out every tea box out for fear of waking the dog. I did find Tazo "Awake" black breakfast tea. That was decidedly out of the question, because at some point this morning I would love to crawl back in bed and sleep for a very long time. I've always slept better during the day due to the Lyme; I don't understand it, but there you have it.

I thought I would write a chirpy little post about some of the things I love-things that get me through the day. The first is my wonderful, loving, holds-me-when-I-cry husband. From the outside it may not be as visible as it should be, but this man sacrifices everything for me day in and day out. I could not have asked the Lord for a more perfect husband to take care of me. He married me knowing I was sick, and I was diagnosed with Lyme 9 months into our marriage. How's that for your first year of marriage? But he took it all in stride. This is Joel, my wonderful hubby, who loves Farmall tractors (John Deere is not welcome in our house), gardening, sci-fi, computers, XBOX 360, and fixing and building things. And I LOVE him!

The second thing I'd like to highlight are some of my favorite blogs and websites. I love to crochet and Lucy at Attic 24 in England is my absolute fav. She constantly comes up with new projects to try and graciously writes tutorials so that everyone can crochet them. She has a zest for life that not many people have, and it is for the simple things that I love-bright colors, nature, and family.

The next blog is the Carpool Queen's Blog. My friend Susan is the author here. She loves coffee as much as I do, and shares all of life here-the nitty gritty and the sweet moments. I'm not sure her boys technically qualify as kids anymore. This set of triplets just turned 14. I met them all 10 years ago and they will always hold a special place in my heart. Susan, celebrate having a week with a little less chaos now that the boys are at camp.

By now, you all know how much I love chickens, and Backyard Chickens is the best website/forum for figuring out what you need to know. When your chickens are sick, you can't always run them to the vet, though to be perfectly honest, one time I did. Those days are over, and now I'm the vet. Backyard Chickens has so much information that with enough searching you can usually find the solution to your chickens' problems.

Since I am starting to get sleepy, I'll quickly highlight three books that I've really enjoyed this year. I'd been wanting to read Brave New World by Aldous Huxley for a year or two and finally picked it up. It was amazing! Thanks to Mary V. for lighting a fire under my tail so that I would read it. If you like classic novels about dystopian societies, you should read this one. It is my favorite so far.

My next favorite was Fahrenheit 451 by Ray Bradbury. It is a book about books-what could be better than that? Both books are about societal control and individuality. It is a great, quick read that will leave you thinking about it for days.

The final book that I enjoyed definitely surprised me. I don't typically pick up modern fiction, but The Paris Wife by Paula McLain was quite good. It focuses on Ernest Hemingway's first wife, Hadley Richardson, and the intensity of their life in Paris. The author is a great writer and the book drew me into the world of the Hemingways, Fitzgeralds, Pounds, and the ever important Gertrude Stein.

Farewell for now, I'm going back to sleep. It's 5:34 and the birds are singing. Hopefully Adah the rooster is not crowing. But I wouldn't bet on it. Here he is in all his glory...

As much as I love these things and my husband, I cherish the fact that I might be well in the future. Please help us get there by donating.

Saturday, June 22, 2013

Why we need financial support

I've been wanting to write a couple of different entries lately, like "What is Lyme Disease," or "What do I need to do if I've been bitten by a tick?" However, this one popped out at me today as important because it might not be obvious why the insurance company won't pay for the treatment that Lyme patients so badly need. Over the years we have been given multiple reasons by doctors and insurance companies. Here is a list:

1. Lyme disease does not exist in North Carolina. (wrong answer!)
2. If you indeed have Lyme disease, the only treatment you need is two weeks of Doxycycline. You will be fine once that is administered. (not necessarily)
3. Chronic Lyme disease does not exist. There is no proof that it does. (the research is there but ignored)
4. A positive blood test is the only way to properly diagnose Lyme disease. (you also need to be evaluated for symptoms)
5. If you didn't have a bulls-eye rash, you don't have Lyme. Moreover, if you did not see the tick that bit you, you can't contract Lyme.(only 40% of Lyme patients have had a bulls-eye rash)

I'll try to address the reasons that affect my case quickly. Otherwise we could be here all night :-)

Backstory: I got into a nest of nymph/baby ticks on a hiking trip here in NC. I never saw the tick that bit me, nor did I get a bulls-eye rash. When I got sick 6 months later with typical Lyme symptoms (remember, I had  no hard evidence), my doctors brushed it aside. My test was negative. I don't remember if I did two weeks of Doxy or not. At that point, 16 years ago, a negative test meant NO HELP.

My mom took me to any doctor who would listen. The answer was always the same: your test is negative, and besides, this disease doesn't exist in North Carolina. The doctors were not kind. They wrote in their notes that Mom was seeking attention for herself. The reality was that she was watching her teenage daughter get sicker by the day.

It took 8 long years to get a diagnosis. I graduated high school. I graduated from Meredith College. By that time, I was married and was so sick that i couldn't hold a full time job. Eventually, I had to quit working. My mom and Mema convinced me to go to a doctor they had found, and I was immediately diagnosed. I did oral antibiotics regemines that to keep the illness under control. Over the last two years, however, that stopped helping for various reasons. The only choice I had was to do IV antibiotics for 9 months.

So here's the question: Why does this bright young couple need to raise $50,000 dollars? (Do take note of our very cute niece :-)

Because 16 years later, very few things have changed with doctors and insurance companies! There are small signs that more doctors are listening, but the insurance companies aren't. There is a tiny possibility that they will pay for 2 weeks of IVs, but it is more than likely that they will pay nothing, and the IV meds are very, very expensive. They don't cover doctors visits, and they don't consider that we drive out of state to get the best care. Bottom line, they make the decisions, and when it comes to Lyme disease the answer is NO. I don't say this for you to pity us or put a guilt trip on anyone. However, the reality is that we can't pay for this on our own. We need help from our family, friends, and the community around us. PLEASE DONATE TODAY! It will make such a difference in our fight against Lyme.

Friday, June 14, 2013

Good days, bad nights

Aside from Monday of this week, my treatments have really not been that bad. The morning IV's have gone swimmingly, but the evening treatments leave me feeling yucky. I just took my final antibiotic pill of the evening and I'm so thankful. I wasn't sure if I could get another one down. I'm doing my last IV treatment for two weeks and then we get to go see the doctor. I'm so excited about this! I'm actually excited about being off for two weeks, just to clarify. Tuesday and Thursday (my off days) were pretty good and I actually felt like a human being :-) The doctor believes that we will be able to get a good picture of my prognosis based on how well I do for the next two weeks. I do start a new pill next week that I have never heard of, but hopefully it won't be too bad. I'll let you know if it is.

 For the local weather report, we had a severe thunderstorm last night which left us with tons of limbs down but no downed trees, thankfully. Straight line winds preceded the storm and they were dangerous-up to 70 mph. I was convinced I was going to see one of the pecan trees in the back yard just lay on over. If the chickens in the outside pen hadn't had wire surrounding them, I'm convinced they would have blown away out of sheer stupidity. That really nice coop they have? Nope. They weren't interested in seeking shelter there.

 I have 3 laying hens who are all in need of treatment for an illness, and it is difficult to know what to do. There are no vets that really specialize in chickens, and then, really, how much is a chicken worth when it's all said and done? I've giving them baths and meds, and hopefully it will all start working. Ever wanna bathe a chicken? Just come on over and I'll put you to it. Here are the three fluffy butts and their rooster:

These meds make me so groggy. Blogging helps normally keep me awake, but I'm not sure it's working this time. I'm off to find a snack or something. Must.Stay.Awake.

Monday, June 10, 2013

Just another manic Monday

It really is "just another manic Monday." Except that I had to ask Joel if it really was Monday! That is a normal question around here these days!

It has been raining constantly around here... We had rain all spring long and never really had true spring weather. It stayed very cool. The benefit of the cool weather was that I was able to be outside a lot and our hemlock trees grew as if they had never grown before. Normally our trees will grow about an inch each spring-light green growth right on the tip of the branches. This year, our hemlocks grew 4 inches. I have lived here for 9 years and have never seen this much growth in one spring. These trees were brought from the mountains and planted here some years ago, and they are quite prized in our yard. We keep a close eye on them at all times. My husband won't even let me trim the end of one branch to clear my walking path. :-) It's okay, though, I've grown to love them too. Here are two of the hemlocks in between two of our pecan trees (also highly prized).

Just last week we weathered Tropical Storm Andrea. It was a real frog strangler. It rained sideways and frontways and backways. Today it rained just as hard, just not as long. I put my cactus out because it needed sun. Now I'm not so sure it won't drown. It's looking a little brown.

On to other news... The medicine is doing exactly what it is supposed to do in my body. It is killing the Lyme at a very fast rate. But that means that the days of feeling good are over. It is really hard to come to grips with this. I went out this weekend, but learned that now when I go out, I need my wheelchair all the time. My wonderful friend Heather supplied me with one and it is great! My awesome Sunday school class is going to be recording the lessons for me so that I can still be included and learn from the Bible. I was feeling very disconnected from church since I haven't been able to go, and this will help a ton. I've been super emotional as of late. The Lyme is in all parts of my brain-especially my frontal lobe. I cry because I feel terrible; I cry because I'm overwhelmed. Last night was the all-time low, though. I cried because one of the chickens pecked me. Looking back it is pretty funny. I'm surprised Joel held it together without laughing his head off at me. In my defense, however, it hurt really bad! This was the perpetrator:

She has a terribly sharp beak and is a proficient flier. I have three of these White-Faced Black Spanish chickens and their names are Ruby, Garnet, and Sapphire. So far, Ruby is the only one I can single out because her comb is really red. The other two look just alike.

Writing about things I love makes me super happy. But I do need your prayers now more than ever. Some days I don't remember anything about the day before. Sometimes I get so groggy during my treatments that it takes everything I have to stay awake. As the toxins build up in my body, I get very sick and spend hours in bed or on the couch. This afternoon I felt well enough to go take care of the chickens. It lasted about 20 minutes and then the fatigue hit and I couldn't move off the couch. But so it goes. I have to make it though a summer of this. Pray for me and pray for those who are taking care of me. Please donate to help us pay for the medical treatment that costs $50,000. We need more than money too. If you can help out in any way, please let us know. Leave a comment or contact me through FB or email. And if you don't do anything else, watch Duck Dynasty for me. I love me some Si!

Thursday, June 6, 2013

How it all began...

My story with Lyme started 16 years ago when I was 16. Somehow I managed get covered by the tiniest ticks I have ever seen while on a hiking trip in North Carolina. In order to get rid of them, I picked them off and squished them between my thumbnails like any thinking teenager would do. Nothing bad came out of that for 6 months until I got the flu. The flu triggered the dormant Lyme disease and an auto-immune disease called Sjogren's Syndrome. My mom did some research and discovered that I had Lyme disease. Except she couldn't prove it to the doctors who wanted a physical test that would say I had Lyme. They said she was crazy; they labeled her an overprotective mother; they said she had borderline Munchausen syndrome; they said Lyme did not exist in North Carolina. And still, my loving, dedicated, frustrated mom ever persisted in taking me to doctors, trying to get that diagnosis.

It took 8, read that, EIGHT years to find a doctor who would treat me. By then, Joel and I were married. The doctor wasn't even in Raleigh, so we drove west. Now, eight years later, Joel drives me north to see the doctor. I will not mention my practitioner's name on this blog for his protection, so we'll call him "Best-Doctor-Ever." I started oral antibiotics immediately. I improved, but the medicines were always hard on my stomach because of my acid reflux. I did treatment off and on and had been off for the last two years or so to give my stomach time to heal.

Eventually, I got super sick with the Lyme, and by last summer it was obvious that something had to be done. Joel, my kind and understanding husband, left the ultimate choice up to me because we both knew how terrible the treatment was going to be (you get much worse before you get better). I was approved for IV therapy done at home. We visit "Best-Doctor-Ever" once a month or once every two months. We bring new medicines home after every visit; we pay tons of money to get me better. I get therapies that insurance companies won't pay for or even touch with a ten foot pole. We were told that the treatment costs could be as low as $35,000 and as high $60,000 or $70,000. These figures only cover our medical costs (IV medications, doctors' visits, etc...) We need help from you, --our family, friends, and acquaintances. We need help from people who may not know us but may have a link to Lyme. You can't just leave the Lyme alone and expect it to go away. Why not? Because LYME DISEASE KILLS. A great resource to learn about Lyme Disease is the documentary aptly named "Under Our Skin." You can find out about the documentary on their website

While I'm thankful that my Lyme has not been life threatening, I desperately need to have a better quality of life. There is a donation button below that will allow you to donate to our medical fund. Right now we are trying to raise $50,000 dollars to cover my treatment. However, the price could fluctuate based on what treatments I receive. Please, donate. If you can't donate, pray that God would lift people up to donate.