Its been almost a month!

OH my - been a month since my last post. I'm determined to keep up with this. I'm pretty tired, but I wanted to write just a few things down.
1) The power of prayer is amazing
2) Our backyard is finally flat - one week of some very determined landscapers and they ripped up, regraded and made it flat. And its HUGE. In the fall we will seed it, as it would be a waste of money to do it in the summer when the grass is most vulnerable.
3) My hair is short. A few weeks ago, I cut off about 8 inches - its just past my ears now, with lots of high lights. Looks awesome, and its very versatile.
4) This has been my fourth week of chemo. Its not getting any easier. some days are great, other days, like today, are really difficult.
5) Swimming lessons are the best thing i could have ever done for James. He is turning into a fish! We are at the pool every day, sometimes twice a day! Madelynn, of course wants to do everything her brother does, so she is crazy in the pool too! Love them :)
6) James has made two BFF's. I couldn't be happier :)
7) We are getting a second dog. We picked her out today. She is a golden retriever and two weeks old. We will bring her home at the end of August.
8)I need to see the doctor. My depression is no longer well controlled by my zoloft. Ive been on zoloft for 15 years and I think its run its course, Time for stronger meds.
9) The power of prayer is amazing.
10) I am blessed.

New rheumatologist today.

I don't really want to write this post, because I don't know how I feel about any of it. But I restarted this blog as a way to keep a journal and today was definitely of note. Spencer is out of town on business til tomorrow night, so my sister in law Megan, came over this afternoon to watch the littles while my dad drove me to my new rheumatologist. Dr. Spring's office is an hour and a half from my house - three hours round trip, not including the hour I spent in the appointment. I'm so glad my Dad was there. He took notes as I took it in as best I could. The doctor was definitely worth the trip, but the news was not what i expected, nor wanted to hear. We have been trying to figure out what happened to me in January, and my last doctor felt that it all pointed towards lupus and that I needed to do batteries of tests and take this and that, and finally she had said that I needed to start a chemo pill to further suppress my immune system. However, my symptoms continue to be more neurological then inflammatory, and Dr. Spring is not convinced that I have lupus. In fact, she openly admits that she does not know what is going on. I could very well have lupus, but she is concerned that maybe my neurologist missed something, and while she is starting me on the chemo a week from today, it will be a trial, in hopes that these symptoms that I am having improve. But in addition to that, I am to seek a different neurologist to get a second opinion and more tests. At least it feels like a plan. It makes me sick to my stomach that we don't have an definitive diagnosis. I know it hasn't been enough time since the event that happened in january. I'm tired. I want to cry. And, above all...ALL this...I want to have another baby. I think that's what makes this harder. I don't remember ever feeling this strongly waiting for my James or miss madelynn to come to our family. I am supposed to have another baby. But I'm not going to get into that. I have to conquer whatever THIS is first. 

So the plan is to stop the prednisone and plaquinil, start taking mad amounts of folic acid in preparation to start chemo one week from today, which is also the day that Spencer leaves for his 8 day conference in Atlanta. Which is why we are here, in Williamsburg, with family. 

I want to cry, but I'm too tired right now, and crying would not make this process any better. I have our dog sleeping in our room tonight, and I just checked on the kids. I love my kids. A lot.

Well, goodnight moon. Tomorrow is a new day and full of opportunities. the kids and I are going to go out to dinner with grandma and grandpa tomorrow evening, and I think the littles and I may do a couple fun things tomorrow depending on the weather. we spent a ton of time outside today, gardening, pool, etc. I love that we can do that here.

again....hello pillow....goodnight moon.

23188

This is our new zip code. We have been residents of williamsburg, va for exactly two weeks today. Our home is lovely. We have worked so hard painting, unpacking and making it our own. I've spent countless hours in the landscaping (the owners who built this house were unable to care for it, so it was a mess), and we are calling in the professionals to help with a lot of it. I've ripped out two trees, bushes, battled snakes, bees and bugs i've never seen before, and a horrible case of poison ivy. All while on a quiet culdesac, in the sun, with my children playing happily nearby. Seriously, there is nothing better then time spent outside as a family on a warm, sunny spring day. And the fear of busy streets, strangers, and other dangers lurking, are not a concern here. I am blessed. So very blessed. My family will live a happier, healthier life here in williamsburg.

Spencer is doing very well - he LOVES his office. Its the perfect space for him, and he is able to accomplish what he needs to in a more relaxed atmosphere. The kids are better about listening to mommy and not disturbing daddy because they have room to roam. Playroom, living room, kitchen, their own rooms, and a HUGE yard. They are relaxed. we are relaxed.

I don't know how we did it for 8 months with Spencer working out of our bedroom, and the two kids crammed in one room. We outgrew our old house QUICK. But at the same time I find myself missing it. Spencer had taken pictures of the house after he cleaned it and was just about to get in the truck to move, and it was empty, but at the same time, it was still full. Does that make sense? It was the first home Spencer and I bought. We brought James home there. I remember the day Spencer was laid off and came through the door and I hugged him and told him how proud I was of him and loved him. It was a cool december day, and when he called me, I dropped to my knees in prayer, and knew peace. I miscarried there, as my son slept peacefully in his bedroom on a warm, bright sunny day the friday of mothers day weekend, I lost his sibling in the bathroom. 3 months later, I was pregnant again, and nine months later welcomed Madelynn home. Many friends and family came and went through that house. We never had much room, but everyone was always welcome. Whether for an hour, or a couple days, our home was their home. We have amazing friends. I miss them so much. I became sick there. Unable to get off the couch for nearly two weeks, and months of regaining my strength and focus, Spencer put his work and his masters program on hold to care for me and the family. In that house we grew, learned and loved as a family. We learned to BE a family in that home. And, in a decision that took an instant to make, we packed up that home and within two months, we moved. My heart is full. I don't believe I have an attachment to "things", more that I am very visual, and I associate many of my memories with places, smells, sounds, etc. So as I looked at the pictures of the empty rooms, I simply hoped that the person who had bought the house from us, would love it as much as we did.

I started my new job this past saturday. I am grateful that the relaxed atmosphere of Williamsburg is also apparent in its businesses. Not a slacking relaxation, but rather a different way of life then northern virginia. And I again, am grateful. I am a competent technician, well educated, and have a lot to offer. And I can back it up. But I also know, that I need to learn this new hospital before I offer ways to improve it. Everyone and every place has its own way of doing things, and every way can be correct, just different. I am grateful for my background. Hope Center taught me an extraordinary amount. But I am also listening, and learning and making mistakes with the best of them. that was a lesson that took years for me to learn in the work place. Listen. Learn. Be teachable. Repeat. Notice I said "learn in the workplace". I am not a good listener. I am stubborn and I have my own way of doing things. Poor Spencer. He sprouts grey hairs every day becasue of my antics. I love that man.

My health is stable with some "bandaids". I have become nearly completely reliant on a drug called Nuvigil. My neurologist gave it to me to combat the fatigue brought about by the lupus. Its a new drug, and very expensive, our insurance does not like to pay for it, but we've been blessed that they are willing to cover a few hundred dollars of it at a time. ($600 without insurance for a 30 day supply) It used to be as needed. It is now needed every day. I can tell when the fatigue is particularly bad, because the nuvigil doesn't work as well. Other days, it makes me feel like superwoman. Im running again, working out again, acting like myself again. I've lost weight - almost 10 pounds in 2.5 weeks.

Well....I have to stop here for a bit. My little girl is awake, and its almost time to take her to the doctors office. She has a nasty rash on her bottom :(

I feel like i've unloaded a bit. I dont like how long blogging takes, and that it can take time away from my kids. But I needed this and feel lighter almost. I'll finish up later tonight.

Packing...

I have somewhere between 50-100 empty boxes sitting in front of me. There is a ton of dirty laundry in the basket up stairs. Toys are everywhere and there are an infinite number of things that need to be done. alas...here I sit. I don't have the drive to pack. I kinda want to, I NEED to, but again...here I sit. Madelynn, Allie and I move one week from tomorrow. Spencer and James follow the next day with the truck. Its a little surreal this whole moving thing. Its a big deal to me, because I don't like change, and I like to feel in control. Well, I am in the middle of huge change and in no control.

Yesterday, Allie (our dog) and I went for a three mile run. It was beautiful outside and it was nice to get out early in the morning and enjoy the fresh crisp air of a spring day. I used to run all the time. Then I got sick and for two months it took effort for me to even walk my son the half mile to school. So I am glad to be getting back into the swing of things with exercise. I hate what prednisone does to my body. The water weight is terrible. I am grateful to be back on such a small does, so the symptoms aren't close to what they were. Now to lose the weight I've gained.

My tooth is killing me today. can't drink hot or cold. If I do, I can feel the pain shoot down the root of my tooth. Ugh....going to the dentist tomorrow, hoping special tooth paste will fix it instead of needing a root canal. We just cannot afford that kind of bill right now.

I know..I'm whiny. But, everyone has days like that :)

Here

We are here. Its been over two years since my last blog post. So much has happened, changed, etc. Its amazing. Mostly good things.

Miss Madelynn was born April 8th, 2011. She was 8# 5oz and BEAUTIFUL. James has taken to her little sister wonderfully. She is now a little over a year old, and my little baby James is now FOUR! Spencer and I have been married for six years this coming august.

In January, I got really sick. It was a stroke, only not a stroke. CT and MRI were clear. But I couldn't walk, speak, drive, think, function, etc. Fast forward, and numerous blood tests, neurologist, pulmonologist and rheumotologist. The diagnosis is most probably lupus and rheumatoid arthritis, so treatment has begun.

After this diagnosis,  opportunities presented themselves to move to Williamsburg to be by my parents, brother and sister in law. We were able to sell our home through a short sale, so we need to wait a few years before we are able to take out another loan on a home.We feel very blessed that things have fallen into place the way they have. Whenever we have had a trial, and things seem to be too tough, a door opens right when we need it to. I am so grateful for my father in heaven, and how well he knows me.

( This is me in August 2012) Looking pretty good for having had a baby 4 months ago)

Today was my last day at The Hope Center. My heart broke a little bit as I walked out that door. I intend to do some relief work there, but a six hour round trip just to get there and back, is quite a trip. I have never been so attached to a place I have worked, cared for the coworkers the way I do, loved the quality of medicine practiced, and compassion shared between owners, doctors, technicians and animals. I have never worked harder then I have worked there. My blood and sweat went into that place. And I would have stayed forever. But, a big part of this decision to move, is inspired by the need to put our family first.

I have so much to write. Some good, some not so good. But I think for now I will call it a night.But I am here. We are all here, and all is well.

More to come .