Christmas Coasters..

They had more shine to them when I finished :)

Relaxing today..

Before I realized I was actually sick and there was a reason to the madness in my head and body, I didn't want to live my life. I loved the life and curiosity of a fictional character. I would lay in bed and hate that I couldn't move my legs or sit on the floor without it being a hassle to get up. I avoided activities with my nieces and nephew because I didn't know if I would be able to get up without any weird looks. I was going crazy in my head.

Being in bed and not being able to do anything to fill the void I was trying to wrongly fill, I've had to actually deal with it. I can say I'm on my way to happiness now. And that void was nothing but a fictional life that I would eventually be lonely with. I am now learning to control my thoughts and differ between the real and the fictional. I don't want another life or anyone else's for that matter. I am really learning to love me for me and realizing I do deserve all the best that life has to offer. I can say that I am moving in the right direction. And as my doctor's say, "This is a Marathon, Not a Sprint."; that goes for this disease and myself as a person. I am sure I will have more down points, but when I get back up, that is what will help get that much stronger.

My Christmas was really good and nice. I definitely over did it, but it was worth it to see family and friends that I haven't seen. My family loved the coasters I made them. So I say that was  success! (pictures will follow) Today was the first day I've had energy to leave the house. Worn out now! But it's good to get fresh air and exercise a bit.

Dealing with this shit...

I have a disease. The past couple of days have been really rough and my light wasn't shining too bright. At times I was ready to give up and be done, but a part of me was still flickering. I had a really intense, bad breakdown and it took me a couple of days to recover. I don't want to give up and I want to fight, but sometimes it's so hard to. I feel better today and my light is shining brighter today. I hung out at the salon yesterday while my sister was getting her hair done and it felt really good to be in the salon. Though, it made me sad that I wasn't the one doing her hair, but she was in good hands. It turned out beautiful and I know she was really happy with it too.

I'm just really sad. I know I shouldn't be and I know eventually this will (hopefully) be a positive, but I don't know how to look at it like that. I need to know how to deal with this and there really isn't a way except to find it in myself. And it's cold outside so I really can't go out and get fresh air. My immune system was wiped out and I have no muscle or meat to keep any type of warmth on my body. It sucks. I'm looking forward to Christmas and spending time with family and friends. I get excited when I see other people smile and laugh. It helps me from being sad and depressed.

I finished my Christmas presents that I made for my family. They turned out really good. I will post pictures after Christmas because they read this blog!

Different Outlooks..

Last night was my nephew's chorus Christmas Concert. Since the IVIG Treatment wiped me out this past week I was still hurting yesterday. It was still hard for me to walk yesterday so I showed up in my wheelchair. After the performance my niece asked if I was going to have this "cold" forever and when I told her yes she made a really sad face. It broke my heart. The rest of the night I couldn't help but think "what is going through her head?". I'm living through it so my perspective is completely different and I feel selfish because I haven't considered anyone else's. She is six years old. I lived with my sister for a year and she was used to me being normal and now I am too fragile for her to even touch my arm or leg.

When I was in the hospital they had my IV through my jugular. When they gave me morphine I would tell everyone I was a superhero in training. And maybe in a sense I was. They were giving me medicine to make me better. I haven't seen the beautiful or kindness in anything for a while. I was so drained and negative on everything because I was always hurting and tired. Maybe now I will be able to see the beautiful and kindness in everything. Maybe that is God's purpose of putting me through this pain. Maybe I am chosen for this task. But it wouldn't be a task once I fully understand life. There is a reason why I am going through this. I can't change the world, but maybe I can help change or guide the people around me to see the beauty in everything that life and this world has to offer.

Me and my sister..

Not feeling good..

So today I am in bed all day. My body is worn out, I'm hurting and I feel nauseous. This treatment has definitely taken a toll on my body. I want to cry, I really do but for some reason there is nothing in me to cry. I wish I can curl up in a ball and close my eyes, and when I open them all the pain is gone. I wish.. The new nauseous medicine doesn't work. The pain medicine works, but I start feeling the pain again around 7am. (I take the medicine before I go to sleep.) I hate this.

I am so frustrated as well. I feel like I'm a burden at times. I can't do anything on my own and I know my family is busy with their on lives and having to wait on me! I was independent before and now I am completely dependent on everyone else. It sucks! I'm sure I'm not a burden..but I can't help but feel like it at times.

I'm supposed to learn how to crochet tonight but I feel so awful that I'm even forcing myself to eat. And I haven't even made my family their Christmas presents! I just want to feel better and have some sort of energy for at least a couple of hours each day! This constant hurting and sickness is really getting to me mentally! And there is nothing I can do about it. Staying strong is so hard, but it's the only thing that will keep me going. I needed to vent today..

The weekend is here..

So it's now after my first set of treatments. It went good and it was long days! Super boring!! I feel like my hair is falling out more and I'm really nauseous. I got new pain medicine that fibromyalgia patients take so I hope that will work. Also, my doctor lowered my medicine! It is still a high dose, but at least it's lowered.

I am able to walk around my house even though my balance is off. I use my walker or wheelchair depending on how I feel. I am a big scary cat now! Ha I have been brave enough to tackle Costco on a weekend with my walker, but that usually wears me out for the rest of the day.

My spirits aren't so low anymore. Which is good :) I don't really know how I feel at this moment, but I'm trying to stay positive and strong. I'm going to learn how to crochet on Monday so that will keep me busy! I hope everyone has a great weekend!

First day of treatment..

IVIG , will be here for seven hours today..got my book and laptop !!

Update..

I can't sleep so I thought I should give you all on update. Dan and I were looking at pictures today and realized I started having symptoms in 2008. I had flare ups, but didn't realize they were and made excuses as if they were something else. Being a hairstylist and working long hours I figured I had issues with my legs because of that. I would try different workouts, but never stayed consistent with any of them so I figured that's why they still hurt and were stiff. I thought I had carpel tunnel and my forearms needed acupressure to be better. Everyone who has this disease has an acute flare up that can be deadly. Mine was October 15. It landed me in the hospital and I believe that was my body telling me to wake up and get better!

I am starting over. It's scary. I have gotten a lot of amazing messages from friends and family and people I do not even know. Thank you for all your prayers and please don't stop because that is what helps me get through each day!! It means the world to me that I am in your thoughts as you are all in mine everyday.

My mornings are usually ok, but by the afternoon my pain is horrible. I am getting more nauseated everyday and my eyes are still on and off blurry. Apparently, my medicine causes cataracts :( So hopefully next week I can get my eyes checked. Once I start my treatment tomorrow, I am hoping they will start lowering my dose of my medicine. They make me crazy and have horrible side effects, short and long term. I will be okay and I am so thankful I have all of you to share this crazy journey with! I couldn't do it alone.

What do you do..

So I am now on this journey that I want nothing to do with. This is my life now. So either I sit here and cry or I stay active and hope one day I can help someone else who is suffering with this disease like I am. I am not by any means at peace with this. I am still angry and I still don't understand, but there is nothing that can be done; I have a disease the rest of my life.

Good news, my insurance approved my treatment. I start that tomorrow so I hope I will start feeling better.

After math..

So yesterday was the support group meeting. I went in with anxious hopes and came out even more sad. I realized it is going to be a lot longer getting better and more struggles than I anticipated. Don't get me wrong, everyone there gave me some type of hope and inspiration, but knowing it will take years to get this under control had put me into a deeper somber. I didn't sleep at all last night and woke up at 4 am. My mind is going crazy and my thoughts are out of control. I have come to realize that I haven't accepted this yet and I am still in a sense of denial. I don't know when I will be okay with this and please be patient. This all happened so fast that I think I need time to really digest it. Yesterday opened my eyes that things could be a lot worse, but for me this is my worst.