My Sunday Morning

This morning I managed to get up and ready for church. I haven't been able to physically go to church in over a year, I wasn't even able to make the Easter service. It took some spoons and was kinda difficult, but I knew it'd be worth it - I'd be able to see my friends, thank people for praying for me, hug Joaquin, meet Samuel and love on all the rest of my kiddos!
But I forgot an important detail to all of this - the service time at the church had changed. I was ready to go and thought I might be a little bit late, but in reality the sermon was over half way over and I'd used too many spoons getting ready.
I was so close to being able to go, but it was too far for my body to handle.

I refused to let my Sunday be ruined and determined to hear a sermon or something like it, so mom and I watched last weeks Flatirons sermon and the message hit me to the
core.
God's an expert at using bad things, upsetting things, to show Himself and draw us closer to Him. Sometimes you just need to put the hurt aside and let Him do what He does best; love you.

This isn't how I planned to spend my Sunday morning, but it is the way God used to reach me and touch my heart.

Best Road Trip

I'm heading home from going to/being in my sister's wedding, wedding was in Kentucky and I live in Colorado, and therefore I need to entertain myself in the car. My usual go to for boredom, pretending to be a dinosaur, doesn't work when you're in a car, but I'm an adaptive person and I've made a wonderful car game. It only works for people riding in the car...unless you want to die via fiery car crash.

Look out the window, focusing on the cars next to you - namely the driver's side window. Wait/hope the driver looks over and then open your eyes as big possible while smiling as much as you can. Keep staring at them like that until they drive past your car.
Repeat what you did to the other unsuspecting motorists until you laugh too hard to breathe.
It is awesomely hilarious.

Catch Up

I hadn't blogged for awhile when I decided to just write something up about my friend's new son and I remembered how much I freaking love Blogging! I haven't in forever because I have this thing about blogging; I want whatever I write on here to be well written and worth you clicking it and with how poorly I've been doing, I just didn't think I could do it. I seriously have like a notebook of posts I've written up but not posted because they "weren't good enough."
But now I've decided to get back into the habit not only because I love it so much, but to have a way to write frequently. The accident in '11 did a lot more damage than any of us thought it did, it combined with a lot of seizures and concussions have made it where reading and writing is very difficult for me. The way to fight back and gain that ground again is to write and read on a regular basis, so here I am.
The plan right now is to have a weekly appointment I guess you could call it and then add more when I'm able. The first one is going to be "Slender Saturday". I know a lot about the myths, shows, games and creepy pastas involving Slender Man, so it'll be really easy to have something every week. Like I could give an overview of Marble Hornets or another series, a review of the games, etc.

I know Slender Man isn't horribly exciting and most, if not all, of the people who read my blog are more interested in how I'm doing than learning about a new monster on the block. But fear not reading people - I've actually found a great way to share what's going on; my Tumblr. I post things as they happen on there, like if I have a seizure I'll make a post that says "I just had a seizure". And once I've gotten enough writing mojo back to add another weekly thing I'm going to have "Medical Monday" where I'll wrap up the weeks advents and post them.


So, that's the hopeful future of this blog for now. Time to catch people up on how I've been doing.
My last important post was about my seizures coming back, so I'll start from there.

• Seizures are common place now; I have at least 1 every other day. We know I seize in my sleep, but it's not like we can count them or anything.
• I can kinda walk occasionally. When out of the house I'm always in Cale, to be without him is just unsafe. At home I'm usually anchored to one place all day. I've been banned from the stairs because I was falling down/up them so much is was just too risky. Being able to go into the kitchen and make lunch is usually a stretch too. Fortunately I have Cale and a really awesome family who do more than what should be asked of them to help me out. My sister's boyfriend carries me and breaks me out of seizures all the time because he's just the bomb. She picked very very well.
• The current diagnosis is Chronic Lyme Disease. If you want to know about it watch "Under Our Skin" it's on netflix and take a look at the websites at the bottom of this post. I kinda suck at explaining things.
• My symptoms are as follows: 1) Barely being able to walk 2) Seizures 3) High levels of chronic pain 4) My body can't control its temperature; I'm pretty much cold blooded so just sitting outside can be dangerous. If I get too hot I have a seizure and the same applies to being cold, so things like BBQs are out of the question and I have to look at a detailed weather report to pick out what I'm going to wear. My phone has an awesome app thing that shows the highs and lows for the day, has a 4 day plan and, this is the most helpful, has a graph of predicted temperatures per hour. I'm sure there are other symptoms, I just can't remember them off the top of my head.

I can't think of anything else to add, so here are the websites/Tumblr (I have one for my pets, so I'm just gonna slip the link on in there....)

•  Tired of Lyme website
• A look inside what having Chronic Lyme is like
• Tire of Lyme Facebook page
• Lyme Disease One Day at a Time Facebook page
• Lyme Chick Facebook page
• Lyme Support Bracelets
• The Spoon Theory
• My Tumblr
• My other Tumblr

As always, thank you so much for your prayers and support - they mean the world to me.
 

Having a Baby Changes Everything

Yesterday one of my friends welcomed her first child, a beautiful baby boy, into the world. Not only was it the first child for her and her husband, it was also the first Grandchild in her family. Just by being born this little guy changed so many lives - Parents of the bride were transformed into grandparents and her brother turned into an uncle. Such a huge and amazing change from the birth of one child. The first child. Welcome into the world little guy, you've already had a major impact on your world and I hope you're a blessing to everyone you met for the rest of your life.

Herx Sucks

I haven't written in awhile because there hasn't been a ton to tell. I forgot to mention in my last post that I can walk again. I'm not particularly good at it and I can't go for long distances, but I can walk and stand again.

Right now, I'm probably getting better, but feeling much worse. It's called Herx, pretty much the anti-biotics are working and have killed a lot of spirochetes. That's the getting better part, less spirochetes means that we're gaining ground. The feeling worse comes from the fact that I now have a ton dead spirochetes in my system and that is making my body flip out. A lot. I've been having seizures, my other symptoms and pain are a lot worse and I honestly just feel miserable and very sick.
We don't know when this set of Herx will pass, but I for one hope it passes very very soon.

If I'm feeling better or things change I'll try to blog more, but until then thank you all for your prayers and feel free to ask any questions- just keep in mind that I may take awhile to get back to you :)

Return of the Seizures

I've got about a weeks worth of backlogged posts that I'll be working on posting soon, but this recent change in my medical situation is important so I decided not to wait on it and just post about it now.

Saturday night I was found at the bottom of the stairs seizing. We estimate that I was unconscious for 5 to10 minutes and it took me several hours to figure out where I was and what had happened. Fortunately my family was able to take care of the situation, so no EMTs ambulance rides or ER visits this time. I had a couple of seizures in my sleep that night and may have had another one last night before I went to sleep.
As of right now we don't know what's causing them. I have a history of seizures, but we thought they were caused by a medication I was taken off of, so the ones I'm having now are confusing and concerning. They may be being cause by another medication or possibly the heat since right now Colorado is in the 100s and my body cannot control it's temperature worth beans. I overheat really easily and when that happens I usually have more trouble controlling my pain and fall into heatstroke at the drop of a hat, so now we're thinking that maybe my body really flipped out when I got too hot.
We've called my doctor, but we haven't gotten any orders as of yet.

I apologize for the sloppiness of this post, after seizures my thinking gets really scrambled and I have a hard time communicating, but I didn't want to wait on letting you guys know what was going on.
Thank you very much for your thoughts and prayers, they mean the world to me and my family and, as always, feel free to ask any questions you may have.

Thanks for reading and God bless <3

Noodle Legs Take 2

Monday evening I went to stand and my legs gave out completely. Since then I haven't been able to stand or walk, I don't even have the ability to transfer from one surface to another and, par usual, we don't know much about what's going on. I have an appointment with my main doctor on Monday to take a look at things and tomorrow I have physical therapy, so maybe my therapist will be able to help some. The current theory is that the spirochetes have outsmarted the antibiotics I'm on right now, so I'll probably have to start a more aggressive treatment that may include IV medicine.

Thought I should let you know, I don't know a ton right now, but things seem to have taken a downward turn again. I trust my doctor, he's dealt with Lyme cases before and isn't scared of my case. Things may get rougher, but I'm always up for a challenge and I've got a very good and loving God on my side. :)

As always, feel free to ask any questions you may have, I've actually improved the Q&A tab, so things will be easier than the FormSpring set up. And if you want to add something to my Smash Book, feel free to mail it to me. Thank you to everyone who is praying for me and reading this blog, I'll try my best to keep you all updated.

God bless,
Sara

New Pages

I have a new page and an edited page, if y'all would like to check them out.

1. The Q&A is different now. I got annoyed with formspring, so I set up a new e-mail account instead. This account will be used for blog stuff, so if you have a question or something you'd like me to write about such as how to set up a newt habitat, go on over to the Q&A tab and shoot me an e-mail. :) 
2. I've added a page about my pets since I imagine I will be writing about them a lot. It's just a page with pictures and information on who's who and a bit about what they're like.

That's it, not much excitement I know, but that's just the way I'm rolling today.  (haha, wheelchair joke)

Excitement! Try Not to Explode

Hello blog reading people!

You all probably knew this already, but it's been awhile since I've done any bloggy stuff. I have decided to chance this by blogging right now. Aren't you excited? I knew you would be. Try to contain yourself, though, too much excitement might make you explode. It probably wont actually, but I think when it comes to randomly exploding one should always err on the side of caution.
Since we've gotten that taken care of, let us move on to other things.

1. I have high speed internet and wi-fi!
   This is a big deal for me, we've had dial-up for as long as we have had any sort of internet connection and now we are finally free of it! This means I don't have to sit at the main computer and battle the desk chairs that are so thirsty for my blood in order to blog or do other exciting online things. :)
   Right now I'm chilling on the futon. Take that, evil desk chair!
   
2. My inner ear has finally sorted itself out. I don't remember how much was written about my inner ear getting all screwy, but it was an ordeal. I was really dizzy all the time and had a hard time walking or even staying on my feet, I would seriously randomly fall over because my inner ear refused to sort itself.
   The worst though, was probably at night. I am a very active sleeper, I roll and spin when I'm having normal dreams and I thrash and kick and other violent actions when I have nightmares which make up 3/4 of my dreams. Moving around like that made my inner ear more confused and angry, so I'd wake up and feel very sick. I didn't sleep much and spent a lot of time in the bathroom hoping I didn't puke all my guts out. I was a dizzy and sleep deprived zombie, one of the main reasons I didn't blog any.
   But, now my inner ear has gotten over itself and I can stand and walk without falling over...most of the time. :)
   
3. I updated my wheelchair page since it was out of date. You should go check it out, there's a picture and everything.
    
4. Formspring is starting to enrage me by asking weird and random questions, so I'm probably just going to set up a different e-mail account or something for if people have questions. You may also send me pictures of Narwhals if you so desire,

I think that's most of the exciting stuff, so now it's onto the medical update stuff.

• As stated above, my inner ear has fixed itself and I am very excited.
• I have been completely taken off of my sleep-aid because I was having some pretty crazy hallucinations and almost set my bed on fire.
• I'm still seeing an acupuncturist and pain management therapist (I think that's her title, but I'm not positive) and they're helping somewhat.
• I am still being treated for chronic Lyme disease
• The chronic pain levels have gotten higher. Thanks to a misunderstanding and miscounting how many I had, I actually ran out of painkillers and lost control of the pain. The last time this happened I was in the hospital for a week, this time I just screamed all night, but after I have an uncontrollable spike like that, the pain is always higher and harder to manage. I am working on it, however.
• I have started a Smash Book for get well cards, well wishes, encouragement, etc. If you want to put something in there, mail it to me and I will glue it in there. :)
  For people who don't know my address....I will get back to you on how to get things to me. I may have a P.O. Box address to give to you later...

That's all I can think of for right now. If this post makes no sense, I'm sorry, I'm in a lot of pain right now and am using blogging as a distraction until I can take something. :)

As always, thank you for reading/praying and feel free to ask any questions you may have.

Three Steps Forward and Two Steps Back

 Well, Sara is making progress, but has also had several setbacks. April 1 she had a seizure and had to be taken by ambulance to the ER. Initially, Dr. Anderson thought it was due to electrolyte imbalance brought on by a nasty GI bug she'd had, but after having more seizures, he re-evaluated and decided it was one of the medications she was on the help with pain. We slowly weaned her off it and added Diazepam to avoid any additional seizures while we were adjusting medications. So, the extremely good news is that since stopping the Venlafaxine there have been no new seizures and the twitching she was experiencing when her pain got high has also disappeared! We weren't sure what was causing it, but it seems she was just super sensitive to this medication. Unfortunately, without the medication her pain is worse. The good news on that front is that last time we had to change medication, the pain sent her to the hospital for almost a week, so we're hopeful that the overall pain levels may be ever so slowly decreasing. Any positive in this storm...
  To manage pain, she has started acupuncture and is seeing Dr. Hunter with UCH's Integrated Medicine group. So far, it's too early to say if it's helping with the pain, but she has noticed the magnets placed on her ear really helps with sleeping which in turn helps manage the pain. Dr. Hunter will be working with her on additional breathing, imagery, and biofeedback techniques.
 Another setback has been several falls she's sustained during the seizures, through tripping or when her legs give out without warning. She had a CT April 2 because of these falls and thankfully it was clear. She is experiencing some dizziness, nausea and fuzzy headedness from the concussion(s), but Dr. Anderson thinks it is from the inner ear bones getting shaken up with the impacts, much like a snow globe. She just has to be extra careful until they settle down on their own. We have threatened to get her a motorcycle helmet if she keeps hitting her head...
 Otherwise, she is her usual cheerful self and looks forward to hearing from her friends. Your notes of encouragement and prayers are greatly appreciated and mean the world to her. So, from a grateful mom, thank you!

Mission Accomplished!

For the past month or two, a big hawk has been chilling in my backyard. I knew it was a hawk because my big brother Jayne (commonly mentioned in the Twinny Time Blog [I tried to make that a link, but my app is retarded so I'll fix it later]) has always been really interested in birds of prey and everyone around him just absorbed the information. To this day I am a boss at identifying peregrine falcons.
I also know that some hawks like to eat turtles by picking them up and dropping them on rocks. I have a pet turtle whom I love dearly, so this concerned me a great deal and I made it my mission to identify what type of hawk it was so I could see if it would try to eat Bach. If that were the case, I would have to get started on building an impenetrable fortress for my turtle to play in while he was outside.

Today, I completed my mission! With help from a bird book and Jayne, I have discovered that my new hawk friend is a Swainson's Hawk. They are big, beautiful, and most importantly don't eat turtles.
Thanks to his markings, I know that my friend is male so I have decided that my next mission will be giving him a name...

A quick and messy medical update

I've been having seizures. On April 1st, I had a grand mal and had to be taken from my house to the ER via ambulance. I had a petit mal on Thursday, but my parents were able to break it before 911 needed to be called. Yesterday my legs gave out without warning and I fell down the stairs and got really banged up. This morning I woke up to a seizure ending, realized that I needed help and grabbed my phone, but I started another one before I could call or txt. Fortunately I was convulsing so much that I sent my mom a txt full of gibberish, so she came and broke the seizure. While she was going to get me some medicine I had another one, so she had to break it again. Then, after convincing I wouldn't have another seizure because of the medicine, I went back to sleep. Today I've honestly just been miserable, my body is really beaten up and I keep trying to have seizures. Fortunately, someone has been with me all day, so the seizures were broken before they had a chance to fully start. I'll be seeing my doctor on Monday and probably start taking anti-seizure meds.
Thank you all so much for your prayers and encouragement, they mean the world to me. I know God is in control and while I don't understand why this is happening, I trust Him completely and know that He loves me and knows what He's doing.

On a random sidenote, my sister's suggested I start a caring bridge website so I can do more to keep people in the loop about what's going on. I'm still very much on the fence about it, so I would love some feedback. You can either comment here on the blog or on my Facebook account.
I feel like I've been hit by a train, so I'm going to stop here and get some rest.

Thank you all for reading, I hope y'all have a fantastic week.

God Bless,
Sara

I Don't Want to be a Retarded Bat

For some unknown reason, my body has decided that I am a bat. Not an awesome bat like the vampire bat, not a cute one like a fruit bat or those fuzzy little white ones that make leaf tents, no, that would be too cool and I am 95% sure that my body wants to kill me. My body has decided that I am a retarded bat that goes to sleep at 6am and wakes up at exactly 2:30pm. A bat that lived like this would be shunned by all the other bats and get eaten by something. Way to go body, once again you have come up with a flawless plan.
We've tried to just wake me up at a decent hour, but I am nearly impossible to wake up, so that didn't really work and it makes me question my fate if I needed to wake up to survive, like if my house is on fire.... I think I'll just cross that bridge when I come to it.

Anyways, back to me being a really stupid and doomed bat. We have decided that the only option for me to keep me human is to stay up all night and day and then try to go to sleep at a normal time.

So that's why I am writing this really weird and random post right now. So far it's gone well, mom passed out, but the older sister and I are watching tv and discussing what would happen during a zombie apocalypse during the breaks.

I may post other random posts, so consider yourselves warned.

Hallelujah!!!

First off, Sara really wanted to write this update herself and kept hoping each day she'd feel up to it. But, pain mixed with exhaustion has made that impossible and we hate to keep y'all waiting any longer.

First, She saw the integrated medicine group at University of Colorado Hospital on Feb. 27 about her pain. The PA we talked with was very nice and suggested a sleep study to find out if there is anything other than pain keeping her from getting a good night's sleep. She also suggested consulting the geneticist at Children's to see if the hyper-mobility in Sara's large joints is truly genetic so we know if there are other medical issues associates with it. For pain, she suggested acupuncture in addition to what she's been doing. Sara bravely faced the fear of needles she developed with Embrel and Humira. There was also someone there who could show her the needle and let her experience how it really feels and after that, she was fully on board with the plan.

Since Feb. 21, Sara has taken every opportunity to practice standing and has really pushed herself. She also practiced walking holding on to my or her dad's shoulder every time she moved from room to room. On Feb. 28, she walked to bed just holding her dad's hand and stood on one foot. Pretty exciting after all these months!



























Then, being Sara she had to go one farther... Feb. 29th '12, while we were helping watch a friend's kids, she was standing to help put the 4 year old in bed and Poppy was excited and jumping. While trying to keep Poppy under control, she came into the living room, walking on her own and didn't even realize what she'd done!! After we all freaked out, she had to experiment with this new found independence in a very Sara way.... Sara and Poppy! Every since, Sara's been practicing walking every chance she can. Sometimes she forgets it's been months since she's walked and over does it and has to pay for it later, but she's getting stronger every day!!

We are praising God for His healing and thankful to the Lord for leading us to a doctor familiar with Lyme Disease. We know that all this is in His hands and are trusting Him to continue this good work in Sara. She wants to thank all of you for your prayers and encouragement, they have meant more than you can imagine especially when the pain is high or it seemed she was only getting worse.

Sometimes a Call From the Doctor is Like a Punch in the Stomach

My dermatologist called me today about my biopsy results, I thought it would take longer, but apparently I was wrong. He told me the results were in and that he thinks I have lupus. No beating around the bush or anything, no, he just dropped that lovely bombshell and reminded me to come back in a couple of weeks to get my stitches out.
I'd been having a pretty awful day before that call, so after it I kind of just sat there in shock for a bit and then started to freak out. A lot. I don't really know why I freaked out so much, but I did, I almost lost my mind and it took hours for me to be calmed down.
I'm totally fine now though.
Anyways, since this is a new doctor who hasn't been brought up to date on my case, he might be wrong. Right now it looks like there could be 4 different causes for my feet freaking out.

1) A really weird side effect from one of my medications.

2) Some sort of virus.

3) An autoimmune disease such as lupus.

4) My heart throwing little clots into my feet.

I've gone off the medication that might be causing it, so now all that's left to do is get more testing done with my primary doctor, wait, and pray.

Aside from my weird freak out that consumed my Friday, I'm actually not all that worried. None of this took God by surprise, this is all still completely in His hands, and I trust Him. We were actually planning on running some of the tests needed before the dermatologist dropped the bomb shell, so it's not really going to throw a wrench into my already planned medical stuff. I'm still working on strengthening my legs and practicing standing so I can get on my feet and out of the chair soon and so far it's been going really well. I haven't fallen a single time yet which is a ton better than anyone expected. =D

As always, thank you all so very much for your prayers, I will keep you as up to date as I can, and feel free to ask questions. :)

Standing Tall!

Today I stood on my own two feet for the first time since November. I actually stood again and it felt amazing! I'd been feeling like my legs were getting stronger for a few days, so I decided that while I was in physical therapy I would try and stand. I nailed it on the first shot without any trouble. I can only stand for about 30 seconds right now, but it's still a huge step forward in getting better and I am ecstatic about it! In other medical news, apparently I have vasculitis in my feet, so I went to the dermatologist (the newest addition to my fleet of doctors) and he biopsied a piece of my toe. I went in expecting to get blood work done, I was totally cool with that, I actually have track marks from giving blood and getting IVs, so having a needle stuck in my arm wasn't that freaky of a concept to me. Getting a needle stuck in my toe, that was a first for me, but it actually wasn't as painful as I thought it would be and the doctor was really nice and had a good bedside manner, so it's all good. I just have to be careful with my toe until it heals and I get my stitches out and the results from the biopsy should be back within the week. That's all there really is as far as medical news. Oh, did I mention that I STOOD today!!! Here's a picture! I am very happy and going to bed now.... .... I stood...I really, really stood.....this is the best day ever! <3 esta

How Things Are Going

Sara's had a rough week pain-wise and has been pretty out of it. On the medical front, she saw Dr. Anderson on Monday and he tweaked her medications in hopes of lowering her pain. He also checked the shoulder she injured in a recent fall and decided she'd sprained her rotator cuff. She's in a sling and on anti-inflammatories for it and hopefully it will heal quickly. She's in her third month of Lyme treatment so hopefully we'll see improvement in the next month or so.

She also returned to physical therapy for the first time since becoming wheelchair bound. Leslie re-evaluated her and came up with exercises to maintain and increase her muscles strength and to help with her rotator cuff sprain. She will also be adding exercises to address the neurological issues and hopefully help Sara get back on her feet, literally.

She also continues to have vision problems and headaches from the concussions even though the ophthalmologist and neurologist found no structural problems. The plan now is to see her former vision therapist to see if the head trauma messed up her vision tracking.

So, that's where things stand at the moment. In spite of everything, Sara continues to have a positive attitude for the most part and is extremely thankful for all the prayers and encouragement, especially when the pain and discouragement threaten to overtake her. Thank you!

The Desk Chair Wants My Blood

Last night I had another fall that has topped all the others. Unfortunately, I completely blacked out when it happened, so there's not a lot I can tell y'all story wise. All I know is one second I was washing my hands and the next thing I knew, about 10 minutes had passed, I was on the floor and the murderous desk chair was on top of me. I thought I'd been shouting for help, but it turns out I was just moaning oddly. So, eventually mom came in and found me and, after a moment of freaking out due to seeing her child being squished by an evil chair, helped me up and back to the couch.
It looks like I fell mainly on my right side, so that means more injuries for that arm, some more bumps and bruises, and probably some head trama since the right half of my skull has been throbbing since then and I'm getting really emotional and confused at the drop of a hat again.
Right now, the plan is to keep a close eye on me and try to wait to have everything looked at until the 6th when I was already planning on going in to chat with my doctor. Personally, I think we need to add destroying the current desk chair to that list.
I'm 75% sure that thing has it in for me.

Snowy Day

I'm in a great deal of pain right now, so this won't be a thing of wonder, but I wanted to show y'all some beautiful Colorado snow. The other picture is Kova, she's being a therapy animal today and helping me manage the pain. It doesn't help as much as my friend's puppy Poppy, but it does help and I'm very grateful that she's decided to help me today. :)

Being Wheelchair Bound + Being a Stubborn Dare Devil = Misfortune

Since my house isn't really handicap accessible, I usually get around by using desk chairs and one unfortunate day I decided to see if I could make one of those chairs jump. In my defence, it seemed like a really good idea at the time. But, what was going to be a glorious moment of independence and greatness turned sad. Instead of jumping, the chair wheels got stuck and I flew across the hall and crash landed with all my weight on my right arm. Fortunately I don't weigh a lot, so I didn't break anything or cause any long term damage, I'll just have to be in a sling for a couple of weeks. I'm now down to one working limb, but I have every confidence that my left arm can carry the weight until my right arm heals.
Aside from that, there haven't really been any changes on the health front. I still can't walk, am in a lot of pain, and being treated for chronic Lyme, but if that's what I have we won't see any changes for a month or so.
As always, thank you for your prayers and feel free to ask any questions. :)