A Renewed Hope

The last few months I have been thinking how I can express my love and appreciation for  everyone that has helped our family so much. There has been such an outpouring of service that I really felt strongly I needed to do something.  I had the thought of bearing my testimony at church. Late at night I would lay awake and think about how I wanted to come across to people what to say and what not to. I kept getting these thoughts and decided to do it. I thought about it constantly. The only problem is I knew I couldn't stand up  there myself so Kent was wonderful in offering to do it for me. I also wanted to document my thoughts at this time and this pretty much sums it up. I hope it came across okay to people. I was so worried.

This is what I came up with:

I am sorry I am not able to be here in person today, but I wanted to express my love for you all as a ward and for the outpouring of love and support for me and my family over this last year. I feel at a loss of how to repay everyone and feel like a thank you just doesn’t give it justice.

You never know what life can bring. It can happen suddenly and you never see it coming. Life is so fragile. Cherish it.  I never imagined I would be crippled or chronically ill for so long. I have been bed ridden for over a year now. It’s hard to accept my current state and having to use a wheel chair. I didn’t know if I would make it last winter for fear of my organs shutting down, but through all this I have realized, in order to fight any kind of illness or overcome a trial in this life we need to have FAITH and HOPE.  I have realized lately when things don’t go as planned or like they should I need to keep reminding myself of finding that renewed hope within. I think of the words Try, try again. Never give up.

My family and friends help to renew my hope. I am thankful for a husband who carries me literally when I need it. I am thankful for my daughter Karlie who always asks, “Mom can I get you anything” there is not a day that goes by that she tries to give me words of comfort. “Mom you’re going to get better and I pray for you every day”. For my son Ethan always being concerned if I am in pain and he has a curiosity of what’s in my IV’s and how it works. And to my little Emma who always asks, “Mom do you need help getting your socks on”? “Can I put a blanket on you”? “I just want to be by you”. They say these things constantly. I know these little acts may seem small, but I have learned to cherish the little moments. They are my angels. How could that not be my renewed hope?  My family is my rock during this time and I am so thankful for them and hope to get better to help them instead of them helping me. I am proud of the extra responsibility they have taken on to help out.

You as a ward also play a huge role in finding my renewed hope too.

Thank you so much for the many meals brought in, thank you to the people who just have called up out of the blue and say I am bringing dinner by, thank you for the gift cards that I have no idea who they are from, thank you for the notes, flowers, the emails asking how I am doing, for the friends who haven’t given up on me. You know who are.  Thank you for mowing our lawn, thank you for the many desserts dropped off at my door step.

None of you have to do this and I know how busy everyone’s lives can be. I am sorry I have been sick for so long. But know the outpouring of love has meant so much to me and has kept me going. It has helped our family tremendously. There are seriously too many things to count, but know that I appreciate each and every one of you. I thank you with all my heart. I pray and hope I may get better soon. I have faith, hope and a determination I will someday walk fully again.

I am not sure why this is my trial in life, but I do know I need to have faith that things will work out. I do believe I am being guided in finding the right doctors and the path I am on right now. Treatment has been expensive, but we have somehow managed and I know we are being blessed with the extra work that comes for Kent to make extra money to help pay for it all. 

And then Kent said he thanked everybody.

Under Our Skin (Lymes Disease)

All I ask is you watch this movie for about 5 minutes, because I know it is long. Some of you may not know this, but I have Lymes disease that was confirmed back in July. They think the whole disease started out as Lymes and over time has manifested itself as Rheumatoid Arthritis. Below is a video I wanted to keep documented for myself. It explains a lot of how I feel and similarities of what I have gone through. About the first 5 minutes there is a girl who is very similar to how I am. Her name is Mandy with blonde hair. I am worse in my movements. Sometimes I can't move at all. The other difference with Mandy is the disease affected her speech where mine is not. Lymes disease can manifest in different ways. Luckily my brain is not affected and I am not a quadraplegic. My doctor is also at the end of this video. His name is Dr. Klinghardt in Kirkland, Washington. He is about 45:45 into the video.

http://www.hulu.com/watch/268761/under-our-skin

The Diamond In The Rough

Having a chronic illness for so long can change a person’s perspective on life. You get to a point to where you are literally willing to do ANYTHING to get better. You start to sell things you normally wouldn’t do in hopes to preserve one’s life. For the worldly things don’t matter anymore. Only fighting for what is important does.

My medicine and travel to see the doctor has been literally thousands of dollars. Let’s just say I could have bought many big things with the kind of money we're spending. Some of the medicine is from Switzerland and is ridiculously expensive. When we made the decision to sell our four-wheelers to help pay for my medicine, I told Kent, if I am selling my four-wheeler I want the kid’s pictures taken by a professional. He said, it's a deal. That may seem dumb to some, but in my eyes it was important. It has been three years and the photographer was doing a back to school shoot. So it was much cheaper than her normal shoots and those deals don't come around often. I didn’t realize how hard it would be to get them done. I am physically not moving well and didn’t think that part through. LOL When we got to the site of the shoot the photographer was shocked and asked, “What is wrong with you”? LOL She is a little blunt and asked me a ton of questions. Hopefully, next year I will be well again and we will get the whole family's pictures.

I am so glad I pushed to get these pictures done for it has brought me so much joy just looking at them. My life right now can feel so frustrating and hard and yet inside of it I find my three beautiful diamonds holding me steady.  That is why I call this post, “The Diamond In The Rough”. For that is what they mean to me. The pictures bring me hope, joy and remind me of what I am fighting for. My kids have had to take on more responsibility this year than ever before and I am so grateful for them. I am sooo blessed!

I picked my favorite pictures or the ones that made me laugh out of the 300 photos.

My beautiful sweet Karlie.

I am so glad my kids get along together.

The Photographer was asking Ethan, how many girlfriends do you have? He was thinking and said "ummm... let me see." I was thinking, holy cow how long does he need to think for. Kent was thinking, "aaahhh yeah, that's my boy."

She had each kid write what grade they were in with their own handwriting.

Ethan threw a fit about wearing what he called the "big girl granny glasses".

Hmmmm let me see how I can hide these glasses.

We had a hard time getting Emma to do a natural smile. While looking through the photos I could tell when the photographer was asking her things. It made me laugh.

This picture reminds me of her sometimes-cute-sassiness!

The photographer asked Ethan to put his head on Karlie's shoulder. I remember him saying something like, "Say what! You want me to put my head on my sister's shoulder?"

Notice he did it with an apple on his head and a little coaxing.

With this one, I remember Emma saying, "Am I smiling too much". :)

Karlie was pretending to be the teacher. She was having a hard time holding a straight face. 

Oh come on! This is soooo boring!

My Sign

On Facebook several of my friends we're posting this story. Every time I looked at it I thought, Sheesh! It is sooooo long. That would take forever to read. LOL Over a few days I saw the same post again of the story and I finally gave in to reading it. I am so glad I did. I definitely would tell others to take the time to read it.


For we never know what kind of sign someone else may have. And I realized that my sign was definitely hard to admit and put down for myself.


Here is the story:



http://bravegirlsclub.com/archives/2151

After reading the story I realized I needed to write down my own sign. The trouble is that I would be admitting to myself that I am crippled. This is not who I am. I am fighting an uphill battle and I feel that to accept my current circumstances would be to admit defeat. My only solution so far has been to hide it from everyone.

Well here it goes anyway… I have a debilitating disease. I wake up every morning completely stiff and in severe painful that only slightly subsides for a short time during the day. The medicine I take, which is supposed to help me, makes me sick and clouds my mind. I am forced to use a wheelchair which I abhor. I fight this daily battle for my kids.

In the story I understand where she is coming from. I have had to sell things that I love to pay for my treatment. I have to deal with all the staring eyes as I limp along hunched over in pain.

Kent told me to post my sign on FB, but I couldn't. I want to hide it still. I need to overcome that. I figure with my blog, there might not be as many people reading it, so I posted it here. I don't care who reads my blog I am just insecure I guess.

The story makes me realize there is always someone else out there that has it worse off than me. I can fight this battle.

Battle Of A Lifetime

I have decided to vent my feelings on my blog once in a while. I figure it’s a good way to document what I am going through. Maybe in some ways it can help others who face the same disease or something similar. My hope is that my journey in finding answers will be a stepping stone for the future generations. My great grandmother had it and learned to walk again. Now I have it and some of my cousins.

My journey has been a mixture of searching for answers, going from doctor to doctor and even traveling around the US to visit well known doctors. I am desperate to preserve my life and won’t accept that my only option is liver/ kidney failure and many side effects from medicines. I plan not to give up hope that there is something better out there for me. I am not going to say whether my journey is right or wrong for others, but I do plan to document what I have done and tried. I hope my journey is not in vain. So far, I believe it is not. We have discovered more findings with lab work along with the RA and I am seeing improvements each day. I just hope it continues.  For now I just want to explain the severity of the disease in itself and a bit of what I have gone through over the last 11 months. I had planned to write a journal every day, but I got so frustrated at times when there was months of depressing stuff to tell, so I stopped.

 I call the last 11 months, pure hell………

Rheumatoid Arthritis:

It’s weird how life can change so dramatically from one day to the next.  You don’t necessarily see it coming either. I have learned, some things we have control over and some things we don’t. I never imagined to the extent of what I would face as one of my trials or challenges in this life. Not having that control especially over what your body does is the most frustrating thing in the whole world. With Rheumatoid arthritis I learned control, at times is out of my hands.

The disease started sudden and fast 6 years ago and came on strong the same way again this year. It was at its worst around February, March and April. This time around, I was scared for my life. It got so bad, the doctor, Kent and I worried my organs we’re affected by the disease and would begin to shut down. I was bed ridden. I wasn’t able to hold a conversation; I couldn’t think or speak clearly.

I felt like I was paralyzed in my upper body. The disease had moved into my spine.  I couldn’t move my neck, I couldn’t move from my back to my side when I slept. Kent had to help me, and when he did, I screamed out in pain. For every single movement was sheer torture. Sleeping was also pure misery. I remember waking up crying in pain every single night. I couldn’t even lift a bed sheet to cover my body. Who would have thought a sheet could be too heavy to lift.  I have never experienced so much pain in my entire life. Kent had to carry me everywhere.  Like to the bathroom. He amazes me, he never once complained of getting up at 3AM or all hours of the night helping me. The disease moved around frequently and was affecting almost every joint in my body. My back was hunched over from the muscles that were so stiff. I couldn’t straighten my back and could barely walk. Sometimes when I would wake up my hands would curl into fists and I would have a hard time straightening each finger one by one out again. Sometimes it would take all day to straighten them. Other times I couldn’t straighten my limbs and I would have to deal with it just being half bent throughout the day. This is some degree of what my world was like.

 It has now been 11 months. 11 months of being bed ridden. I am not sure how I kept my sanity through it all. I read a ton when I could, trying to keep my mind off the pain and what I was going through.   Sweet notes from my kids or well wishes from others kept me going.

As time has gone by some things have gotten a little easier.   It’s hard to get a cup out of the cupboard or to get something out of the fridge. I have a hard time opening any kind of object or jar, sometimes I give up and eat something else. It amazes me how heavy objects are and when I was well I had never noticed that before. The joints in my arms are getting a little better. Each time I notice I can extend my arm that much further. I walk better, but still walk inch by inch. I try not to hunch over. I still have a hard time sitting and have to get help up. I can try to walk down a stair case, but going up is a huge challenge. Kent usually has to carry me. There have been times venturing out with friends I couldn’t get up my steps and my friend pretty much had to put her arm under me and lift me up each step.  I can’t drive, I can’t get in my truck and Kent has to lift me. I can’t do laundry or clean very well, or take care of my kids to the extent they need it or how I want to. But you know, through all this I have learned to treasure the very small improvements there are. Emma was 6months old when it started and I am so thankful my kids are more grown up now. I can finally turn in bed now with a little discomfort. There is always pain, but it’s not as excruciating as it was in months past. If I have an itch on my head, I can finally reach it to some degree now. LOL Getting dressed is a challenge, but I am determined to get better at it. Holding any kind of object is hard, but it is getting better. When I get out on a good day, it takes a lot out of me, but it’s worth it and hopefully my energy will improve.

I have a greater understanding for people who have some sort of handicap. My heart goes out to them. For I understand.  I look at old people in a different light and it pushes me that much harder to fight and not give up. I just feel I am not old and this disease does not define me or will not make me that way forever.

A feeling I have never before experienced when I did venture out in public is when people would look at me; I would look up make eye contact and they would hurry and turn their head away. I got this everywhere I went. One time I went to a b-day party for my niece and there was extended family there from my sister-in-laws side. When I went to leave the party I turned around and I saw all of them staring at me. The whole group hurried and turned their heads away all at the same time. It is funny thinking about it now.   I know they were probably just wondering what was wrong with me, but I realized I have never been looked upon in that way before. It hit me hard. I am not sure why it hit me so hard noticing that. It makes me stronger though.  And yes I do have a handicap parking space and I love it because it’s closer. LOL I also realized, a wheel chair is a symbol to me. When I look at it, the first thing I think of is that this is not me. It makes me stronger in a way. I feel I am fairly young and don’t want to accept this life right now being in a wheel chair and crippled. So with everything it makes me want to fight that much harder.

Also, one of the hardest parts of this trial is, seeing all my muscles atrophy and deteriorate.  In 2010 I worked and trained so hard at keeping myself fit. I was a runner and I loved it. It was good therapy for me in a way and it was a time I was able to think by myself. At the time I thought I was conquering the disease by running and to some degree I like to think that I was.  I was even able to run in the Wasatch Back Relay. One of my legs was 9 miles and another leg was part of the Ragnar hill. At that time that might not seem huge to some, but it was a huge deal to me.  Over the years doctors told me I would never be able to run and I was out to prove them all wrong. LOL I could run a half marathon. I felt on top of the world. I felt great and I was in best shape of my life. At the time I wish I was a little more confident and not worried about the silly things we worry about with our bodies.  It made me realize we take things like our bodies for granted. I know I did. To have been to that place of being on top of the world of accomplishing my goals to being here in the here and now was a huge let down for me. To being physically fit to then be in a situation where I was suddenly the opposite of being fit. Realizing….. I am crippled again. It was detrimental to me.   I felt like I was in this body and there was nothing I could do about it. It didn’t feel like me and I don’t want it to define me of who I am. I didn’t and wouldn’t accept it.  I am determined not to accept this lifestyle. It depressed me. At times I thought well, I can run again I can gain my muscle back. And there were other times I thought, will I be able to run again, will I get it back, let alone walk again?