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.