I Won't Give Up

January 4, 2014

Everyone has their battle scars whether it shows on the outside or hidden deep within. On this journey I've learned for me, each day is a battle to try and conquer both.

I've learned mind and body are connected in ways that are beyond hard for us to fully comprehend. I know how we choose to think, affects every aspect of our lives. It even affects those around us. I have often wondered and now learned that it's a matter of how we choose to respond to these feelings and battles within, that helps us overcome it. I decided to share my battle scars as a part of my update. The fundraisers forced me to open the door that I didn't exactly want to share but I knew I had to. LOL. I was very grateful for those fundraisers. I was touched and surprised by the support we received. We were truly blessed to pay down some medical bills.  I know people are curious as to how I am doing and I owe it to everyone to open up. Most of the scars I have been dealt from time to time are the constant pain, extreme exhaustion that is my constant companion, losing part of my eyesight, the loss of being active, loss of missing out, fear, anger, loneliness, isolation (feeling like my life is a prison). Those are my battle scars within. It's the destruction of the inflammation plaguing my body. It's there, hidden, destroying everything in its path.

The outside battle scars are; Every joint is affected in my movement in one way or another affecting daily simple functions array of life, like picking stuff up, not being able to use my fingers etc. I walk with a limp because my ankles have degenerated. I can't go up or down steps without help. It depends how much strength I have that day too. My eyes have battle wounds of themselves. The whites of my eyes have a blue hue and are scarred permanently.

These are my battle scars. I may not feel comfortable with it all or like it. The disease changed me, even my face a bit. I have to have hope that it's not always going to be like this. It has taken me a lot of time to learn how to turn that panicking fear into comfort. I began to turn those thoughts into, I'm going to live, I'm going get through this. I'm going to be a wife and mother fully again. I soon realized if I thought negative thoughts about life, it made it worse and made it so I wasn't able to move past those thoughts and my life started losing that important constant, HOPE. I had feelings of anger about the cards I've been dealt/given in life, I've tried to learn to remind myself to smile. I made a goal to move each day even if my body hurts like crazy along with the constant fatigue. If I don't feel like moving, I would do it anyways. My stubbornness has helped because it was and is a constant fight to stay out of that wheel chair/bed. I am still working on it. I've got a long way to go, but it's coming. I learned to try to laugh again, I started downloading bright happy pictures and quotes that I want to paint someday. I started to meditate which I thought was a crazy, sounds weird, but has helped a ton. Those are some of the things that have helped me cope with being bedridden.

My journey at this time has taught me I just need to get through these daily battles and TRY, TRY again. Life can be a difficult journey, it's up to us to decide for ourselves how to respond to our daily battles within.

Update: I'm improving very slowly. It's a night and day difference from last winter in 2012/13 when we thought I wasn't going to make it. The doctors are turning parts of my immune system off. I realize this is not the solution I had hoped for. We did everything we could and tried many things to fix it, but for now this is what's keeping me alive. It's been a year since being on these immune suppressants and I'm still mostly bedridden, but I'm getting up a bit more. We are hoping my heart, lungs, joints are healing. As for my eyes I have necrotizing nodular scleritis that is result of the disease. I'm half blind in the way of being really farsighted. I can't see facial expressions from very far. Thankfully, so far I can read up close, so that is a huge blessing.

Beware: I'm about to show my eyes a few months after the necrotizing nodular scleritis began. We have tried to get my pics from the doctor. It's been about a month and a half since trying to get them. The clinic just sent us paper pics instead of digital pics of my eyes. Maybe these one's Kent took is better anyways, because they were really gruesome at the beginning and these are pretty bad. I'll keep trying to get them. Crazy looking back at them huh!

BEFORE:

NOW:

I actually was able to get ready a couple times this month. Yay! That is WAY.....huge for me. It's hard to use my hands (they can't curl into fists and they are a bit crooked to look at). My right wrist won't move up and down. It's painful to put curlers in, but I did it. Hopefully, getting ready will go from a couple times a month to once a week, to twice a week, to everyday. Those are my goals anyways. At least I am starting to have a couple days when I feel like I can function a bit. I tried to cook with my oldest one day and I couldn't open anything or cut anything, but I have to believe that it will come. Most days feel like a really bad cold or flu. You know that extreme exhaustion that comes along with those colds/flu that's how my everyday feels. It's very, very frustrating and hard to function and talk to people feeling like that. Some days vary from really really bad, to bad, to okay. Friends and family please be patient with me. I miss my life with you all. I'm really trying to come up from this, I've realized it's going to take time. Also, know I can't be around winter colds/sickness. It puts me down again on my death bed and takes me a month to get over where as a normal immune system takes a few days. I'm coming up though. Sorry to people who showed up at my door in the past and wanted to see me. If I didn't come, I couldn't function that day at all. I'm sorry if I offended anyone. Why each day is different from the next, I don't know. I've asked many doctors that question and they can't give me a sufficient answer. Please forgive me. Sometimes I am sooo out of it I sleep a ton and have no idea people came.

This pic is one of the days I was able to get ready for my doctor appointment. I wanted to prove to him I was improving. You can't tell in this pic, but I've lost some of the steroid cheeks. Thank goodness. You also can't tell when I close my mouth my jaw is jacked up. I'm hoping I don't have to have surgery or tons of dental work and I hope the jaw joints go naturally back to normal.

I do know that there has to be something else out there to help me. I feel it. There's always promising things to try and we hear about them all the time. Each route we've tried has helped for a time, but each one wasn't enough to sustain me fully, even now. For some reason I have such a desire to not give up that HOPE that something will help fully. We're trying alternative therapies too and that looks promising. I am hoping for inspiration on the the next step. And of course that we can afford the treatment. We are currently looking into the article below in the next post with the research being done at the U of U.

I chose this song on my blog for the words: 

I won't give up on us even if the skies get rough. I'm giving you all my love, I'm still looking up.

If the song does not play for you, here it is on youtube:

http://youtu.be/ZBDmUqp0JTU

I've been sick for 9 years, bedridden for 4 years of that time. 1 1/2 years at the beginning and 3 years are currently right now. The other years were shutting off my immune system, providing temporary relief, but not fixing it. My body began to reject meds and I started having all sorts of side effect problems. But during it all I have told myself I won't give up. I'm also thankful Kent hasn't given up on me during this time. Taking care of someone is very hard and not fun at all. Our lives changed dramatically. He always gave me encouragement when times were bleak. He was and is my rock. 

I won't give up on us even if the skies get rough. I'm giving you all my love, I'm still looking up. What better way to help me keep going.

Em