Back in the saddle again....

One of my favorite things to do used to be to bake. I loved to do it. I could put some headphones on, get my mixer out and just make all kinds of creations.

Nephew #2. 1st Bday Cupcakes 

I’ve made birthday cakes, smash cakes for babies, baby shower cakes and all kinds of random deserts. While my specialty was cupcakes, I did enjoy making all types of things. I have made each and every one of my nephew’s birthday cakes, and enjoy doing them all! I don’t know what it is about baking, but it just helps me to be able to chillax for a bit and just get in the zone.

For the past few months, I haven’t baked anything. Most of the past few months my eye site hasn’t been well enough to be able to see what I’m mixing much less a recipe. It got to the point that I had to stop cooking anything for a bit because everything I tried to cook ended up burnt. It was after my husband got up one morning, and smelled my burnt eggs that he said…. Maybe you should lay off the cooking for a bit. If you have ever tried to get the smell of burnt eggs out of your house you probably understand where he was coming from. 

Nephew #1, 4th Bday cupcakes 

Even after I gained some vision back, and probably could have baked something, I still chose not to. I’m not exactly sure of my reasoning behind it. I had all kinds of excuses in my head…. Whatever I made probably wouldn’t be any good, there was nobody that would eat it, I might burn them…and the list goes on. And I never really realized how much I had missed it. My mom told me one day “you need to get back in that kitchen and bake something!” And it wasn’t until a few days later that I decided maybe she was right. Maybe I just needed to get back in the saddle and try to do it. Sure, if I failed I would be terribly upset with myself, but I would at least be able to say that I tried. I had been trying to grab straws at things that I used to be able to do and now couldn’t, and this was another one of those things that I had to prove to myself.

So I put on my big girl panties, picked up my mixer for the first time in months, and got to it. I had chosen to make something different. Something I wouldn’t normally make. Something fallish. So, the final decision was salted caramel apple cheesecake strudels. It wasn’t something hard. It required a lot of steps, but they were not overall hard to make. I was very pleased with how they looked. I got my husband to try one, and was convinced they were going to be the best thing ever…. And he said “eh they are alright, not really my thing.” I just wanted to be like…. NOT YOUR THING?? WHAT? So, I let them sit in the fridge for a couple days, then decided to give some to my sister, to get another critics opinion. So I took her over some of these salted caramel apple cheesecake strudels, and she was so excited to try them. I felt like it took her forever to finally try one… I kept asking, did you try one yet? Did you try one yet? Finally, she texted and said “these things are divine!” And I felt a big smile cross my face, because I had done it. I had gotten back in the saddle, and created something that people liked!

So I am including the recipe for these divine little strudels, so that you can make this yummy fall treat as well! If you try them out, let me know what you think! 

Yummy Caramel Apple Cheesecake Struddle Recipe <=Click here for Recipe and Directions 

 

Friends in low places....

We all know the song….. “I’ve got friends in low places…..” Well I have to tell you I have some of the best a girl could ask for!

There has been 5 of us who have kept touch throughout many many times of heartache, turmoil, family problems, weddings, showers of all kinds, girl’s nights, and so many other things. I am so blessed beyond belief to have the best friends I could ever ask for.  Some of us grew up together from kindergarten-forever…. Some of us met in college… some of us were not even sure how we met! But we all stick together and they have always been there for me. So… this is a shout out to all my girls who have gotten me through some super tough times!

Britt: From kindergarten all the way through college you have always been there! We had our ups and downs just like all teenage girls do, but we always came back to each other. You have taught me so much on how to be a Godly woman, and I am so proud of the amazing woman you have become. Even if your wedding day was the biggest most awesome disastrous day there was…. I’m so glad you allowed me to be a part of it. You’re an amazing wife, amazing dog and cat mama, and super amazing teacher. You live for your kids, and we can always see it. We LOVE to hear your stories about what happens in your classes, and how you handle it. You are an awesome teacher and deserve to be commended in more ways than one! From kindergarten, to our whee weekend, to boyfriends, and Starbucks dates, and so many advice giving sessions I can’t even count. Thank you for everything! I’m so lucky to have you!

Amber S: Girl…. I don’t even know what to say when people say… ”how did y’all meet?” Uhm… it just kind of happened? Either way, I am so happy to have you around. You are the world’s best hair dresser, and always put up with me when I have no clue what I’m gonna do. You always give some of the best advice and are always trying to make me laugh. You had a gorgeous wedding, and I’m so happy that you finally get to have your honeymoon after a whole year! You are an awesome wife, and an amazing dog mama to Duke and Ellie Mae. I’m so lucky to have you around! Thank you so much!

Meggie: If I had a dollar for every time people asked how we know each other I would probably be a rich person. High school, or college, or…. Who knows? All that matters is that we did! You are just awesome, there’s no other way around that one. You share my love for Disney, something that many people will not understand. You are ALWAYS making me laugh, whether through text or in person. Even working together now, it’s always a party! Love you and so glad you are around to sing Disney songs too!

Alicen: Oh Alicen…. I don’t even know where to begin. We have known each other since before we were born. Literally people…. It happened…. Our

parents were in lamaze class together with our sisters!Our sisters are 13 days apart, and Alicen and I are 9 days apart. Everything just falls into place. I am pretty positive I would not be alive if it wasn’t for this amazing lady. She goes above and beyond for anything and everything. She is the best friend I could ever ask for. She has taken me to doctor’s appointments, listened to me cry, put up with my jokes, helped me try to pull myself back together, picked up medicine for me, come and visited me in the hospital while she was at work, taken time out of her day just to check on me…. Everything. But most importantly…. She is the biggest encouragement. She is always positive

Polly. And people, that goes a LONG way. We have been through SO much together and you always find some way to encourage me. I don’t know how you do it, but you are just that awesome. From high school (boyfriends, sleepovers, church stuff, proms, AHS), to college the first time, to working at the same hospital, to getting married-first you then me, to going back to school together…. You have always been there. There is a special place in heaven for people like you. I hope and pray to one day be able to repay you for even a quarter of the things you have done for me. You are an amazing mama to Shelby, Triggs, and your sea world creatures. You are an amazing wife, and sister. There just aren’t enough words to say thank you. I know sometimes you wanna kick and punch me…. And I’m sure you’re sick of telling me to just “be like a duck”…..But I want you to know that I appreciate you more than you know. I appreciate everything you’ve done. YOU are awesomely fantastic!

If you are wondering just how awesome these ladies are. They all kidnapped me one night, when I realllly needed it….and took me for a girls night. We had tried for weeks to find a night that would work for everybody. And all of a sudden, they just slam through my door and take me hostage! It was the BEST surprise.

So ya see…. I have the best friends a girl could ask for. And before you ask….. I don’t share them :)

A true lesson....

God is teaching me a true lesson. One that I have been extremely hesitant and not very happy to learn about. He has been trying to teach me a lesson on patience.

Anybody who knows me knows…. that I am not an incredibly patient person. I can go with the flow and do whatever, but when something happens I want a solution…and I want it fixed NOW. God has slowly but surely been teaching me that this way of thinking and acting, is not what he has in store for me.

Those who have been following my story, know that I have a nifty (not really) disease called NMO. I have also recently been diagnosed with idiopathic intracranial hypertension. Long story short, that means that my body is making too much cerebral spinal fluid, which can cause blindness from the increased pressure it causes on your optic nerves. Many of you know I have been fighting with losing my vision for the better part of 3 months now. The beginning of this month, I was almost totally blind and we were grabbing straws as to what in the world was causing it. When I finally decided to be PATIENT and wait on God to tell me which doctor to see He showed me exactly the right direction and we had an answer within 24 hours to the battle we had been fighting for 3 months. 

That took patience. God had to bring me to a very low place in my life to show me that He had the right answer, and I just needed to wait it out with Him. And He delivered.

I had great hopes for returning to work very soon. For those of you who don't know, I have been out of work for going on 3 1/2 months. Mentally I needed to return to work. I needed to know that I hadn’t lost everything. I needed to have some kind of freedom back over my life.

I had been to a doctor the previous week, who had told me that she thought I could probably drive soon, and we had set a soonish date for me to go back to work. She did say however, that she would leave the final decision up to Dr. W. But,  I went ahead and got all excited. I was going back into the real world! I was going to be able to drive. I was going to be a real person again…..

So my appt. with Dr. W was this morning. I went in with the expectation of him going along with her orders and letting me go back to work, and start

driving. I knew in the back of my head that he could change up my whole plan, but I honestly didn’t think he would. I was over being patient, I was over being a patient, and I was ready to be normal again. (or as normal as I've ever been)

So, Dr. W walks in… does his little assessment and says. "Well things are looking better. Your vision is improving which is great, but there is still a good bit of swelling on your nerves and disks in the back of your eye, and I think we need to give it some more time to decrease. Hopefully over time, you will gain some more vision back.” I went on to ask him if I could drive…. he went and got the DMV criteria for people who drive with visual disabilities. Surprise Surprise, I couldn’t drive. My vision was not good enough to pass DMV criteria. I asked him about working, and he said no. He said that my eyes really needed more time to just heal, and seeing as how my line of work could get pretty shaky at times he didn’t feel comfortable with that. He said, he would see me in a month and we would go from there, that hopefully my vision would be good enough to drive and return to work at that time.

To say I felt discouraged, disappointed, and just downright defiant, would be the understatement of the year. I was so upset that I couldn’t have my freedom. I was so upset I couldn’t go back to work when I wanted. And I was terrified of losing my job. Terrified of what we would do with certain situations we had coming up. I was just a mess of worry and disappointment. 

And then I happened to start thinking about the lessons that God had been trying to teach me. PATIENCE. I obviously didn’t learn enough about it the first time he tried to teach me, so he threw another curve ball and this time…. I caught on quicker. I have to be patient and wait on what God is going to do with my life. This is not easy. It never has been. It is much easier said than done, that is for sure. My momma has always said “don’t pray for patience, because God will always provide a way for you to gain some”……. I never prayed for patience, but I know that God is trying to show me that it is HIS way and NOT my own.

A friend of mine recently put on Facebook a great quote that I want to share with you:

God may say to wait…. But he will never say to worry.  (Thanks Robert!)

That is something that I have to keep reminding myself! When I start to worry about how things are going to work out, and why we have to wait so long…. I Just have to remember…. He’s telling me to

wait NOT to worry. Those two words may begin with the same letter... but they definitely don't need to be in the same situation! I have always been a worrier. My whole life, I feel like that could be my middle name, worrier. So, this new challenge is something that is not easy, but I am going to conquer it. The only way I am going to get through these new challenges is to wait.... and not worry! 

Mouse Juice

Mouse Juice.... Aka.... Chemo

Its not as much fun as its cracked up to be..... OK..... so maybe its not really ever cracked up to be so much fun.... but one can hope right??? 

Before I get my chemo I always get labs drawn, nothing new for me. I remember when they were trying to diagnose me. I went to the lab, and they drew 16 vials of blood. Yep... a whole 16 vials. Even being a nurse, when someone comes at you with 16 vials to be drawn...... you get a little concerned about how much will be left. Rest assured..... I survived. 

But this time when I went to get my pre-chemo labs drawn, They drew 3 vials. Only 3! Like whoa.... I have graduated down to only 3! This is what they do every time now, but it hit me that I had went front 16 to 3.... huge change in the right direction. 

I never handle my mouse juice very well. From day one, I have always had an anaphylaxis type reaction. My throat starts to swell up and it becomes harder to breath, and my chest gets really tight. This happens every time.... I have been getting this medicine for over 3 years now, and it does it every time. And every time the nurses try some other kind of medicine concoction to try to heed it off. 

So this time, my nurse and I decided it may just be better to knock me out during the whole thing, and that way I would just sleep through it. So.... that was what we did! Benedryl.... lots of benedryl..... got me through my treatment reaction free this time! Which was great!!!! 

So I'm trying to look on the positive side of things........ from 16 to 3 vials of blood....... and a reaction free treatment under my belt. Woot Woot! 

Still recovering from the treatment, but this is all normal for me. Getting another one in 10 days, so fingers crossed it goes the same way! :) 

Nope.

Anybody else feel like this some days? Some days my body just combats against me and says.... "NOPE..... not today.... not doing it..... think again..... I'm staying right here....." 

I know some people may enjoy those kind of days. Lay around the house, chill out and not do much of anything..... sounds like a great lazy day! You can only pray that its raining that day as well. Nothing better than a rainy lazy day at home, just chilling. Right?? 

Wrong. 

These days are hard for me. Sure they are great every now and then, but I always feel guilty. When my body tells me to just stop and rest, I have a really hard time complying. I want to keep going and keep doing. I feel guilty because I don't want people to think I'm just being lazy. Every time I have a day like this, it never fails.... somebody always says well "you gotta get up and just get out, you can't just sit inside and sulk all day."

But I have to disagree. I think sometimes we need those NOPE days. I think sometimes, its our bodies way of saying... "Hey there..... I'm working real hard here, I really need a break before something bad happens." 

Like I said, the hardest part for me is feeling guilty for taking time to just rest. That is something that I need to work on for myself. The past couple of days, have been just NOPE days for me. Yesterday, I fought it. I went and did like I needed to do, and I came home exhausted. I slept more than 10 hours last night and still woke up exhausted. So, my NOPE day continued through until today. I had an appointment this morning, where I was reminded that I NEED to take this time. I need to rest. I need to eat well. I need to take care of my body, and listen to it. So, today...... I'm taking a NOPE day. 

In the old testament, God told Elijah when he was going through a terrible time, that he needed to eat, then rest, then eat some more, then rest. He just needed to take care of himself. The journey to him was too much.  God came to him and said, "let me carry you through this.... and in the mean time do what I tell you and, take care of your body." So that is what Elijah did, and he came out  of his situation on the other side because he listened to what was told to him. (This story can be found in 1 Kings 19. You can read more about it here)

So, long story short.... I hope you will take some time to have a NOPE day. Most of the time.... its needed. 

Hummingbirds....

Hummingbirds have a very special meaning in my life. They always have, and they always will. You see, a very very special person in my life loved hummingbirds. She didn't just love hummingbirds, she loved all kinds of birds. She liked to sit in her dining room, smoking a cigarette, drinking a cup (or pot) of coffee, just watching the birds outside. She loved them. But she would get really excited when a hummingbird came around. Sure, she had tons of finches and some blue jays, but when a hummingbird came around it may her really happy and she made sure everyone in the room saw it. 

Cousin and I with Granny before a graduation ceremony

You see, my Granny was an amazing person. I can't even begin to describe to you the awesomeness that ensued her. She loved her family deeply. She loved everyone no matter what. She did everything for the people around her. Even if she didn't think she could get it done, she told them she would do it and she would ensue help to make sure it was done. Everyone loved her. She loved her church, she was there as much as she could, helping in whatever she could get her hands in. She recruited us grandgirls to help every year for her spaghetti dinner. She just kept going. She was like the energizer bunny, she kept going and going! And she always had a smile on her face. 

You see, when people met my Granny, they probably wouldn't know anything was wrong with her. Until you look at her hands. My Granny suffered greatly from Rheumatoid Arthritis. Just like all the people in her life loving her, the RA seemed to really love her as well and never really gave her a break. If

your not sure what RA is, I would encourage you to look it up, and maybe read more about it. It is an autoimmune disease that attacks your joints. My Granny suffered on a daily basis from finding the right foot orthotics so that she would walk, to dealing with some bad rheumatic ulcers that wouldn't seem to give her a break. Maybe it was just the pain from the disease, but she always kept a smile on her face and she always kept going. She never let people know how much pain she was really in. When people would ask how she was, she would always reply with "I'm alright". She suffered on a daily basis, but she always got up to watch her hummingbirds. Sh always got out of bed and got ready for her day. Whether her day included doctors' appointments, grocery stores, or just being at home for the day.... she always got up and she did and went. 

I took her with me down the aisle 

That is something that I remember on a daily basis. My Granny is my HERO. She always has been, and always will be. Granny was taken from this earth way too soon. I almost feel like I was cheated. Her death was quite unexpected, and was very hard on everyone. Losing such a fundamental part of not just our family, but of the entire community was extremely hard. People constantly would come and say "I'm so sorry...." but all I could think about was something that my cousin had told me...."shes no longer suffering, shes walking the streets with straight fingers and straight toes." That was a kick to the gut. Every time I started to wish, to wish so so bad that she was here with me, I had to remind myself that her time on this earth was done.  I was SO happy that she was no longer in pain, and she could finally wear whatever pair of shoes she wanted. But, I missed her. I missed her on this earth. What would we do without her? What would I do without her?

Granny was the glue to our family. Every family has that one person that holds everyone together, and my Granny was that person. She was the one who fixed the problems, and told you when you were in the wrong, and just held you and let you cry on her shoulder when your boyfriend broke your heart. She was an amazing person, She loved unconditionally. Even when one of us did something that she didn't like (like say... get a tattoo), she loved unconditionally. 

Gift my cousin recently gave me 

Every day that I feel like not getting out of bed, I remember my Granny... my hummingbird. She always got out of the bed, even when she was miserable. She always made the most of everyday. I hope you can as well.. Whenever you feel like giving up, throwing in the towel... think of someone you know that has gotten themselves through a dark time and come out on the other side of it. And if you don't know anybody, think of my Granny. 

The one thing I worry about is not holding up my end of the bargain. Not continuing her legacy the right way. Sure I may have been "gifted" this autoimmune disease, but my dream... and my life's mission.... is to make her proud. 


She IS my hero... I think of her daily.... I miss her daily..... I wish sometimes when I'm going through rough days she was here to talk too... But I know my granny is here with me. She helps me get through those tough times. My only hope, is that I can do her memory justice and just keep fighting. 

So when you see a hummingbird, I pray that you will think of my Granny as do I. That in itself, gives me a little more strength to get through the day.

A new kind of normal

A very, very wise woman recently made this statement to me; "Have you ever stopped to think that maybe your not going to go back to what you once thought was normal? Have you ever thought that maybe God is preparing you for a new kind of normal in your life?" 

That literally, rocked my world. I know that statement has been used in several different contexts, but I'm going to use it in this one because that's exactly what it did. You see, when I first went in to the meeting I was having with this sweet sweet woman, I was at my whits end. I was tired of fighting. I was tired of dealing with life. I was just tired in general. 

I was trying to fix everything. I was desperate to get things back to "normal". I was desperate for my life to get back to exactly the way that it was before my whole journey began. I wanted my life to go how I originally planned out.... and it wasn't. 

You see, my plan was.... graduate high school, go straight to nursing school, find an amazing guy, get married, find an awesome job that I would stay at forever, have a child by the time I was 25, and then just grow old with my perfect little family..... That was my grand plan! 

And I was so upset that my plan was NOT going accordingly! I graduated high school, went straight to nursing school, found an amazing guy, got married, found a job I love..... and then I felt like it was all being taken away. Here I was 26 years old, cant see much of anything, having to rely on my husband to pick out my clothes, make sure my shoes match, and that my hair looks halfway decent. I could no longer drive, or go anywhere alone. All things that I once was able to do by myself, I was no longer able too. 

I had enjoyed being able to be independent. And now, close to all of my independence had been taken away. I was 26 and I felt like my life was falling apart. I wanted a baby by now, and I wanted so many things for my family... and I felt like I was being punished. I felt that God was punishing me by taking all of these things away. 

But then this sweet lady said those words to me.... that maybe God was preparing me for a new kind of normal. I had never thought of it that way. I had always just felt like I was being punished, when instead.... I needed to be thinking about it the way she explained. I was being prepared to embrace my new kind of normal. 

So, instead of thinking and feeling like everything was being taken away and that I had been stripped of my independence, I started thinking of things as a new way of my normal life, and my outlook on things changed! And when my outlook changed.... it helped my entire state of mind, which in turn has helped my entire recovery.  

So, sure I may never get my vision back to what it was before. I may not be able to see colors the way I did before. I may forever need help picking out which clothes go with what. But....this has not ruined my life. this is simply my new way of normal. 

So long story short... (and trust me I know this has been a long one)...... When life throws you lemons.... make lemonade! I know I'm trying to make lemonade out of my particular situation.... so you try too!  

Lets talk....

Hobbies..... 

Had ya scared there didn't I? Nobody likes those two words.... let's talk....... but... rest assured I just wanna talk Hobbies. 

I have learned over the past couple of weeks, that what you love to do can suddenly be taken away from you. For example; one of my favorite things to do is read. I'm a huge romance novel junkie. I can recommend to you tons of romance novels. I can rattle off some of the best and worst romance writers.....

But last week when I lost my vision..... I also lost what I loved to do. You can't read when you cant see! I was so upset. I was able to find some books on audio that I was able to listen too but it just was not the same.

 Then, in the middle of the week one of my favorite authors; J. Daniels  released the next book in one of her series. I felt so left out! I couldn't read it because I couldn't see it. I couldn't ask my husband to read it to me... because lets just be honest.... that would be *awkward*.  

So what did I decide to do? Sulk..... I didn't remind any of my friends who also read that the book came out; because heaven forbid they read it while I cant! (I'm not proud of that moment) 

When I finally stopped feeling sorry for myself, I emailed the author and just asked her WHEN is this AMAZING book coming out on AUDIO??? She says... 

drum roll please..... 

it will be out in the next few weeks. 

Shot down once again. I wanted it like now! So, I went back to sulking..... Again not proud of this moment. 

So I didn't read. I didn't pick up my kindle for several days. I don't think I realized exactly how therapeutic reading had become for me. It was like I needed it to wind down. I needed to engross myself in the stories and the characters, to take myself out of my life. It was very therapeutic. And I was depriving myself of that! So..... I picked my Kindle back up. Determined not to have a temper tantrum because I couldn't read what I wanted too. I was just going to find something that I could listen too and go from there. 

Well... low and behold when I opened my kindle I remembered it had this awesome little feature on it where you can change the sizes of the font, and the colors of the screen and such...And I thought MAYBE just MAYBE if i could make it big enough I could read what I wanted too....... And.... 

drum roll please.... IT WORKED!!!

I was able to read my book, while much much slower than I normally would. But I was still able to read it and enjoy it. And let me tell you.... it did NOT disappoint! :) 

I know to some people this may seem like something small. You may be asking yourself, why was she so worked up over a book? Well because it was something I had been looking forward too for a very long time. And to know that I may never get to read it, it really upset me. Just like, say your favorite hobby is to exercise and then suddenly you fall and break your leg and you can't do it anymore, at least for a while. I bet you would probably be upset about it as well. I guess the moral of the story is, even when you loose one of the things you love to do the most, keep your head up. Don't back yourself into a corner and convince yourself that all your walls are crumbling. Just know, that even if you may never get this one thing you love back.... I'm sure something else will stroll through your life even better. 

So my question to you is.... what hobbies do you like to participate in? And if you were suddenly unable to do them anymore what would you do? 

PS: Sweet Obsession by J. Daniels .... Read it.... Just do it..... Its totally BFP approved :) 

Click Here to take you to learn more about this awesome book and where you can purchase it. 

And while we are talking about J. Daniels,  let me just tell you that she is one of my all time favs. The way that she draws you into her characters and makes you feel like its real life. She has a couple of different series books. The first I ever read was her Bama' Boys series (Alabama Summer Series). And I was hooked after reading just a little bit into the first one! So, go and check her out. Shes a super talented lady! 

Rare isnt always Rare....

Yes, I have a rare disease. Yes, having a rare disease stinks. Yes, rare diseases mean there is not much out there to do about them. And, Yes, rare diseases mean there is not many people out there with the disease. 

NMO in particular has statics of about 4,000 cases in the United states and half a million cases world wide. Women are more commonly affected than men, with a 6:1 ratio. Adults and children both can be affected by the disease. These statistics make NMO a rare or "orphan disease". 


As soon as I was diagnosed, I went to the internet. I researched everything you could think of, on every avenue available. It was on facebook though, that I was able to find my greatest help. There were a couple of support groups set up online for NMO (Devic's Disease). I was very surprised. I had been told that this was so incredibly rare, so I honestly was prepared to go this alone.

Finding these support groups, where I was able to freely ask any question my little heart desired was very therapeutic. It was also therapeutic to be able to read other peoples stories and questions and to know, that they were going through the same struggles as me. So, while yes, I may be the only person in my region with this disease, I did not have to feel like an orphan. 

Just because we are rare, does not mean people do not care. I can tell you that one of the biggest blessings of my life was going to my first NMO patient day. For those of you who don't know what that is, NMO patient day is something that the Guthy Jackson Charitable Foundation (GJCF) sets up for NMO patients to be able to get together and find out the most recent research. It is also there to just be able to be with other people who have struggled with the same things I have struggled with.

This patient day was a blessing to me. I was able to meet face to face with people who have been through or are going through the same things as me. They had suggestions on how to combat against the side effects of medications and just overall how to deal with this disease. During this patient day, I was able to meet a girl who was my age, who had just been diagnosed around about the same time as I had. It was so great to be able to meet her and spend some time getting to know her. To this day, we still stay in contact... whether it be to shoot the breeze, or to figure out what in the world this person or that person was doing. Either way, it was a huge blessing to be able to be at patient day. I have since been able to return to patient day for a second year, and was not disappointed in the least at year two. 

This brings me to talk about the GJCF.

Victoria Jackson has made it her life work to find a cure for NMO. She started the GJFC when her daughter was diagnosed with NMO, and there was no research out there to help. They went clear across the country to try to find help for Ali. If you haven't read their book, I would highly recommend it. Its called Saving Each Other (click the link to take you to a page to purchase or find more info on the book.)

The GJFC has supplied almost all of the money for every amount of research that has happened for NMO up until this point. As the website states, they have contributed $40 million to support scientific and clinical research since 2008. This was done by just one family. That is HUGE. Saying "thank you" will NEVER be enough for the Guthy-Jackson family. 

So you see, being rare.... isn't always all that rare. My disease is rare, sure. There's not much information out there about it, sure. The treatment for it may suck, sure. I may have relapses, sure. BUT..... there are people out there who are going through the same thing. There are people who may be in the same exact chair as I am right now. Next week when I go to get my chemo, there may be somebody else who is literally in the same seat as me. I always have my family with me. I always have my families support. I have an amazing group of friends who always make sure to pick me up at just the right times. (Good friends are hard to come by, and I have been MORE than blessed with some of the best). And the GJCF.... they make being rare.... not so rare. They help us realize that we are cared about. Unlike some of the other orphan diseases out there, they have adopted us into their hearts and have promised to not stop until we have answers. 

Husband of the Year

I know everybody says they have the “best husband ever”. But trust me….. Yours ain't got nothing on mine. My husband truly deserves the husband of the year award. He goes above and beyond anything I could ask of him. Sure, everybody has their flaws…. But he has truly shown that he is amazing in every way.

Reason #1:

When he was overseas (see My Rare Story tab for more info on this), he literally prayed that God would take what the physicians thought was MS away from me and give it to him. Most selfless thing anyone has ever done for me. For those of you who don’t know, when he returned from overseas, he was diagnosed with MS….I was not.

Reason #2:

He cleans the house and does the laundry. That’s right ladies….. my husband cleans our house (better than I EVER could), and he keeps the laundry up. We hardly ever have dirty clothes, he is on it, like cheese on rice! 

Reason #3:

He is my chauffer. I have not been able to drive for the past….. 4 months (almost 5). Before this… I drove everywhere, because his road rage would always get the best of him (thank you military for that!). So, to say that he has literally drove everywhere we go for the past 4 months, with me in the passengers seat…. Well that’s reason for reward enough!

Reason #4:

He has had his fair share of wrong doings just like the rest of the world. But he always fesses up and we can go about life. He has been through a lot himself, coming home from war, trying to get readjusted to life as a civilian after being discharged from the army for his MS. And he has taken it with stride. Truly someone to look up too.

Reason #5:

He always wants what is best for our family. Even when I cannot see what the best option may be. When I want to jump the gun and just go for the easy option. He always knows how to set his foot down and say no…. we wait for the right time.

Reason #6:

He keeps our family in church. I think every family goes through stents where they just “don’t wanna go”. You get busy during the week, and you just want to relax on a Sunday. We have had those occasions. But otherwise, he always makes sure we are getting up and getting ready for church.

Reason #7:

He takes care of our finances. He always makes sure that our finances are in order. When I just want to go and buy something, or go out to eat, or go on a vacation; he makes sure our finances are in order before we ever leave the house. (and then sometimes checks them when were out too!)

Reason #8:

He goes to doctors appointments without complaint. Lately I have had literally at least on appointment a day. He has got up and got me there on time, and never complains.

Reason #9:

Since I lost my vision a couple of weeks ago (see post here for more info), he has had to pick out all my clothes and make sure my hair looks halfway decent before leaving the house. I’m not always 100% sure that what I’m wearing matches. But he always says it looks good so that’s all that matters! He has literally had to be my eyes for me. He tells when to take a step, he holds my hand. He reads the menu to me when we go to a restaurant. He guides the buggy when we go to Walmart. He gets what groceries we need while I stay with the buggy. Everything you would use your eyes for on a daily basis, he has been doing it for me.

Reason #10:

He has always been the best nurse. I may work in the hospital as a nurse, but he is the best nurse at home. He always takes care of me. When I had a lumbar puncture and had to lay flat for 24 hours, he made sure that happened. He snapped when I sat up for longer than to go to the bathroom. He made sure I had everything I needed. When I get my chemo treatments, he picks up the slack for what he knows I wont feel like doing for a few days. He takes me there, waits for the 8+ hours that it takes and brings me home, without ever complaining. When Im in the hospital, he makes sure I get a shower and that my sheets are changed everyday. He makes sure the nurses are giving me the right meds at the right times. He brings me stuff from home that I think I need.

This is only 10 reasons as to why my husband deserves the husband of the year award. I feel like he deserves even more than that. He is amazing. I’m sure he wishes sometimes that he was a different situation, doing something different with his life. But since he’s here with me… he’s doing a dang good job at everything husbandly.

So….. drum roll please……. The Husband of the Year Award goes too……….. MY husband 

**please excuse any gramatical errors in this post.... my husband normally proof reads them and I wanted this one to be a surprise**

Sometimes ya got to take a Pause.....

You may wonder.... what does that even mean? How could you ever find beauty in the pain? Why would you name a Blog that? 

I can tell you from personal experience that when in the middle of what may or may not be the worst pain of your life, the last thing you ever want to be trying to tell yourself is to find the beauty in it. 
Many of you have had a chance to read my Facebook post about last week (for those of you who haven't you can find it here). Last week was by far the worst and best week of my entire life. When the pain started at the beginning of the week, it was like no other pain I have ever felt before. I have had migraines before, I have had tension headaches before, but this was something totally different. It was so different that I couldn't even explain it. People kept asking me, what kind of pain is it? what does it feel like? And I couldn't explain it. The only thing I could say, was "it hurts really bad, like really really bad." During this extremely low time that I had, you could not have paid me to try to see the beauty in it. I was totally focused on the pain. Because of the pain, and the fact that I felt like no one would help me, this pain became more than just physical. It became something that consumed me, mentally, physically and emotionally. I was totally shut down due to this pain. I developed this intense depression that hit my system hard because of this pain. If someone would have said "find beauty in the pain" .... I probably would have laughed in their face.

But then I remembered this one particular song, 

Beauty From Pain--- by Superchick 

My whole world is the pain inside me

The best I can do is just get through the day

When life before is only a memory

I wonder why God lets me walk through this place. 

And though I can't understand why this happened 

I know that I will when I look back someday

And see how you've brought beauty from ashes

After all this has passed I still will remain

After I've cried my last, there'll be beauty from pain

Though it wont be today

Someday Ill hope again 

And there'll be beauty from pain

You will bring beauty from my pain

          -Beauty from Pain by Superchick 

These words, spoke to me in a huge way. This one specific verse points out several questions that I have asked God in the past week; God Why me? God why this? God why now?... And these verses remind me to trust, and rely on Him and he will walk through the valley with me. He will show me Beauty from the pain. He may not show it to me today, or tomorrow, or a week from today..... but He promises that He will show it. And that, is something to always try to remember when you are walking through that valley, whether it is a physical struggle, mental struggle, or emotional struggle; always remember that He will bring beauty from it. He will bring beauty from ashes, and he will always bring Beauty from my Pain.....