Think Happy Thoughts

Over the last month, each day has seemed to be a battle of wills. Each day has been hard and quite difficult emotionally and physically. There were several days that I just watched the clock slowly tick through the day and I couldn't wait for the sun to set and soon I could go to sleep and completely escape for the night. I am not going to lie; it has been hard.

There have been days that I have taken to wearing granny sunglasses in the house and even talking was too much exertion. The television stayed turned off and my laptop was hardly on. My world got so small. 

It hurt my heart. I just wanted to be anywhere but here.

And sometimes all I could do to get through the next few moments was to

Think {very} Happy Thoughts!

It was like a moment from Peter Pan. If I thought long enough and hard enough, I drifted away from the terrible moment. I could momentarily be anywhere but where I was.

Call it denial or just pure crazy...it sometimes worked.

• I thought about the roses that I knew were blooming outside.
• I remembered a beach trip with friends and climbing over a fence to get into a new subdivision's pool that wasn't open yet.
• I thought about the beautiful architecture in New Orleans.
• I went through each first day of school from K-5 and tried to remember what I wore the first day of school. (I did good! I could remember every year but 2!)
• I remembered the butterflies from my high school crush.
• I thought about cheer leading and the year that our football team went to the Play Offs.
• I thought about family vacations to the beach and to Disney World.

I am optimistic person but I am also realistic. I think you can be both. My situation is so hard and so painful but my life is also full of such beautiful, happy moments.

Life is hard. It is really hard, a lot of the time. I firmly believe that we have spectacularly, beautiful moments that may only last a second so that when we face dark times, we have something to hang on to and so we can be reminded of joy that is surely around the corner.

Each day I am trying my best to think happy thoughts!

I am behind on life.

The story of my life. I am behind.

I am having a horrid bout with insomnia right now. My days and night are completely crazy. I really do, absolutely, positively HATE not sleeping. It throws everything off and makes me feel so bad. Ugh.

 Holly is sleeping just fine!

I have to-do lists - phone calls that I need to make, emails that I need to return, blogs that I need to visit, cards that I need to write. Yeah, none of that is happening right now.
I have good intentions but I can't seem to make them happen. Hopefully, I will start sleeping again in a few days. That is what I am hoping for, anyway.

I do have my 5th Siesta verse ready though.

Nevertheless, I will bring health and healing to it; I will heal my people and will let them enjoy abundant peace and security.

Jeremiah 33:6

a special grace

It takes a special grace to be the sibling of a person with a chronic illness.

It takes great selflessness and a giving heart. 

I can't imagine how difficult it must be to carry the extra load that these special siblings carry when they live day in and day out with another person's illness.

These precious siblings are the unsung heroes of the story of  those who suffer in any way.

I realize that I am very blessed to have such a supportive sister. It breaks my heart to know that she doesn't know me any other way than "sick". I was in the car accident when Haley was 7 and since that time our family has dealt with my health in one way or another much of the time.

There have been times when she has rushed home from time with friends to take care of me. Haley always invites me to spend time with her friends when she goes out and she drives  me to see my friends and waits somewhat patiently for me in the car until I am ready to come home.

I have not always treated Haley like I should. I put way too much pressure on her. I expected her to not only be my sister but I demanded her to be my best friend, my entertainer and my care giver. I think part of me felt like she was healthy and she owed  me that much of herself.

I was wrong to do that. For a time, those demands strained our relationship. 

Fortunately, with help, I saw that I was demanding things of Haley that were not fair. She was already giving more to me than she should have ever have to and she gave of herself willing.
Haley has showed me love in such a way that I cannot put into words. She has showed me how to give and how to love unconditionally.

]My sister is a nurse. I have no doubts in her ability. Her professors always gave her high marks for her treatment of her patients. She is an amazing person. I know that one day very soon she is going to touch so many lives by working as a pediatric nurse. Her kindness and gentleness is going to be a rock for families and their babies on days that they would like to forget.
I know she will do that for them because she is my rock everyday.


This amazing person is who God gave me as a sister and I am so blessed.

Sustain Me

"Cast your burdens on the Lord and he will sustain you; he will never let the righteous fall."

Psalm 55:22 

Among other things, sustain means to to keep a person, their mind, spirits, etc., from giving way, as under trial or affliction. God promises to sustain me. He promises to hold me tight and not let me become lost in my afflictions. He promises that I will never fall. I am reminding myself of this, every single minute.

source

The last two weeks have been very hard ones. I haven't been able to do very much at all. I feel like I am spending more and more of my time in bed, with the shades drawn and with little noise because I am so sensitive to the stimulation. I am having a hard time eating and swallowing food and drinks. I am choking on most anything that I try to swallow. And to add insult to injury, my insomnia is raging. And not sleeping makes everything worse. I am only getting a few hours of sleep during the day because for some reason my mind refuses to settle and allow me to have a restful night's sleep.

I am trying hard -very hard- to remain positive. I feel so bad and I am so tired, it is hard to do some days. I know these days will pass but in the meantime, I am trying to get through each hour. I say to myself, just breathe.

My spirit is seems battered right now and tears come so easily. I am very sad.

I am not able to be on the computer very much right now. It is difficult to find the energy and thought to try and post and visit you all. I know it sounds strange to say that being online is an effort but thank you all for being so supportive.

I hope to *see* you all very soon!

Fighting and Accepting

You fight the takeover of an illness. You don't want to give in. If you give in, then you loose not only yourself but you loose the battle. You can't give in. You have to fight the fight. It is an exhausting fight. You can't fight it alone. You have to have a battalion at your side, ready with swords and spears. Ready to fight to the very end.

The beginning of my diagnosis was at first, a battle of wills. Only one of us, was going to walk out intact. I thought that I would walk away. Perhaps, I would be battered and bruised but I would walk away and into the future. Even the best of generals and fighting men have plans that go awry. And so I fought but I lost. I can say that now. I lost that fight.

I lost moments. I lost friends. I lost myself. 

I remember when I decided to change the battle plan. It was the summer of 2007. Oh, a beautiful summer it was. I felt better that summer. The enemy retreated and I took that opportunity to boldly march forward. I had moment of clarity. I had to change my battle plan. I had been fighting the wrong battle the entire time. Instead of learning to live with my illness, I was trying to force in into retreat. It wasn't going away. Ever.

I had to learn to live and thrive with this unwanted enemy. 

I had to learn to find new moments, new friends and a new self and I would have to learn to take Dysautonomia along with me. 

I couldn't let the enemy win a moment longer.

It was easier to make that decision when I was less symptomatic. It was easier to push on and move forward when I was actually physically able to do so. I am so thankful for that moment. The moment when I decided that I wasn't broken. I was just a different version of myself and that was okay.

It was okay to say, "Hey, I am different. I have to live differently. I have to think differently."

That school of though didn't mean that I was giving in or giving up. Far from it. That was acceptance. 

That was learning to live this  new life.

Now, that is not to say that it is easy. No. This is the most difficult journey. I still have moments when I think, "Gah, what a loser!" 

But learning that acceptance wasn't giving up-that living side by side with the enemy was okay, changed the way I live.

Some days I thrive. Some days, I barely get by. But that is okay too. 

I am okay. I am going to be okay.

The fear of lose.

This was a difficult post to write. Dealing with these fears and sharing them with 'my world' is a little intimidating. Please know that this post isn't meant to be self-pitying or victimizing. It is only me trying to share this journey and make sense out of it.

Jealousy. It is horrible monster.There was a time, not so long ago, when that jealousy monster robbed me of the joy of being happy for my sister. It took away my ability to be happy with her while she began coming into her own and living her. As I illustrated (somewhat simply) in this post, my jealousy was the symptom of my great, overwhelming hurt and fear.

My sister is four years younger than me. Two years ago, she graduated college and began a job as a nurse. I have never seen Haley in action at her paying nurse job but she has been nursing me to some degree since she was 7 years old. Whether, she was actually home alone with me, nursing me through a fainting spell or coming to my room and watching a movie with me on a really bad day, my sister is my rock.

Not only was my younger sister graduating before me and beginning a job before me, she was in the midst of budding relationship.

Meet Mike. Haley loves him and you know what...I do too. He is a great guy! But it has taken me two years to get over the jealousy and be happy for the most amazing person I know, my sister and this amazing guy she loves. Mike is so funny and so caring. He really loves my sister. (He also loves our dogs, Sophie and Holly, so that is a plus!) I knew that it would always be important that the person Haley loves believe that I was sick. Mike does believe me. Not only does he believe me but he supports me! The first day that I got to drive, he happened to be at my house helping my parents with yard work. When he finished for the day, he came in and told me what an awesome job I had done that day. I was so touched. I hope I find someone who is as caring as he is.

I didn't like Mike. I didn't like Haley, either actually when they first starting dating. Who was he? He is taking my sister. Her free time was spent with him. In fact, all of her time was split between Mike and her new job as a nurse. I was crushed. I had a daily reminder of what I was missing-a diploma, a job and most importantly, a relationship.

You see, I have never been in a serious relationship. Yes, my illness plays a huge roll in that fact but I am also a shy person, so unless you run me down with your car, I probably won't talk to you. I have casually dated a couple of guys over the years. (I have also been on two of the WORST blind dates in history...but another story for another time!)

My greatest fear haunts me daily. You would think that fear would be getting better but it isn't. Don't get me wrong, I want to be well so badly that it hurts down to my bones. My greatest fear torments me and whispers into my heart and tears small holes into my soul.

My fear is that I will never marry and that I will never have a family of my own. That sentence brings me to tears. That is my greatest fear. What if I don't find someone to love me? What will I do? What if I can't be a mother? I have seen my mother and it is such a beautiful gift-maybe not glamorous but beautiful nevertheless. It isn't the romantic idea of walking down the aisle on a wedding day or holding a sweet, sleeping baby. Though, those are beautiful images in my mind, my heart desires more. I want a husband and I want a family.

And honestly, I don't know if that will happen for me.

That breaks my heart. How can I be complete if I there is a piece of my heart missing because I have no husband, home and family. That is one deep desire that I cannot bear to loose to Dysautonomia and the thought of it being robbed from me, shakes me to my core, every single day.

two good movies. two 'blah' days.

I just rented Love Happens, with Jennifer Aniston & Aaron Eckhart. It was really good. It deals with a lot grief and suffering and overcoming but it was also such a sweet love story. (Plus, Jennifer Aniston's name is Eloise & she is a florist.) Sweet. Emotional. Love story. I liked it. Let me know if you see it and what you think.

The other movie was Julie & Julia. Mom and I went to the theater to see it when it first came out and we really enjoyed it but I had forgotten how cute it was. Meryl Streep was just great and I am a big fan of Amy Adams. It just made me happy. I love the party scene on roof top when Julie completes all of her recipes. It is so pretty.

Isn't it pretty? This photo just makes me happy and makes me want to throw a party!

Migraines, people! Migraines! I think they are the devil, himself! Ah! I have appointment with my neurologist in March and I am trying to be patient but goodness... it is hard to be patient when you are in pain, isn't it?
I have been kind of sad the past few days. I saw my counselor Kelly yesterday. I am always a little bit more emotional after I see her. I think it is because we bring up lots of tough topics that I don't always like to deal with head on like that. I know I sound like a broken record but I can't say it enough. My family is awesome and I am so thankful that at anytime of the day, I can go and talk to them about anything. We cry together, laugh together, and pray together...I have 3 part-time therapists living upstairs! I am so very blessed.
Kelly and I talked about perspective and the importance of gratitude-especially if you are struggling with any type of pain.
So, today I am grateful that I have a wonderful pharmacist who takes care of me and does ALL the hard work that it takes to get me my medicines on time and most importantly, always takes care of the insurance company so that my Mom doesn't have to. Mary is angel!
Is there anything that you guys are particularly thankful for today?

Thou who hast given so much to me, give me one more thing - a grateful heart!

-George Herbert

A Busy Soul.

My soul is busy-I am not-but my soul is stirring and it won't seem to be still and look toward God. I can only seem to dwell on what is not.  There is a lot that isn't what I would like it to be. There is a lot that I wish was better. I am so tired of being in the bed. I am tired of being so dependent on my family. I am tired of feeling frozen in place while the entire world moves around. It is so frustrating. It is so defeating. I want so many things. I want to be in school. I want to drive again. I want to be able to exercise again. I want to play with Holly when she is being so cute and fiesty! I want to go out to the movies or to dinner with friends. I want to take a shower and not be in bed afterwards. I want all those things and I want them NOW!

And in the split second that I am fighting with God, myself, my body and feeling a bit of pity for myself, I am instantly reminded of what all I do have and I am able to do.

I can express myself. I can communicate my feelings almost effortless, whether writing or speaking.

I may not be able to play with Holly but she loves to snuggle. I can lay in bed with her all day and just pet her and love her.

I can bathe myself and take a bath by myself. There have been times when I haven't been able to do that but I am able to do that at the moment.

Even if I don't want to depend on my family, I have a wonderful family who is very dependable. I know whatever I need, whenever I need it, they are here for me.

I suppose it is all about perspective. Prespective and grattitude. I must keep those in my heart right now.

More Lessons

More lessons to share.

Painting by numbers…sort of.

So, I have decided that life is sort of like a painting by numbers kit. I love those things. One reason I like them is because I am a perfectionist and when you paint those, they usually turn out pretty good! But before you finish the painting, you know what it is supposed to look like, you know what you want it too look like but honestly, you don’t know how that picture is going to turn out until you have filled in the very last spot with your very last stroke. Well, God is the painter. He has a giant brush and day by day, moment by moment is stroking our lives with colors-and yeah not all of those colors are pretty but even those colors we don’t like, finish the picture. They finish our story. It is difficult to know that my “paint by numbers” story won’t be finished until I get to Heaven. (Well it is kind of hard but it is kind of exciting too.) But I have faith that God is a supreme artist and I try to remember to give Him charge of my life. (I fail miserably most of the time, though!)

photo from here