Pieces from The Mighty

Saturday, April 7, 2012

Every Life Has A Purpose

"Every life has a purpose" is something that I have been told several times by many people over the past 6 weeks. I know that Robby’s life had a purpose. He brought us joy, but not only did he bring us joy, Robby gave me a very precious gift. It is a gift that most are unaware of.....

I was diagnosed with Rheumatoid Arthritis and Fibromyalgia in September 2010. I had been dealing with the Rheumatoid Arthritis for a couple years, but I had not ever had an official diagnosis. The Fibromyalgia came on all of the sudden. Without any warning I was in constant pain and all over pain, which is really devastating for someone who is 18, in college, about to get married, and wants to start a family.

Rheumatoid Arthritis is a chronic progressive disease causing inflammation in the joints. In other words – all my joints hurt and they become inflamed.  Sometimes my hands look like sausages and my rings are too tight to wear. I started noticing signs of the R.A. when I was around 15 years old. Things like straightening my hair, opening a bottle of water, and even driving a car are all difficult and at times not do-able.

Fibromyalgia is defined as a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas. Basically this means that if you touch me I hurt. It doesn’t matter where you touch me- it hurts. The Fibromyalgia is ten times worse than my rheumatoid arthritis.  

From September of 2010 until October of 2011 I was wheelchair dependent. If we went to get groceries I was riding an electric scooter. If I needed to go up or downstairs, then Tanner had to carry me. If we were going somewhere that did not offer an electric scooter then we packed up my wheelchair. I felt like a little old lady instead of an 18 year old girl. 


Last February my mom, dad, Tanner and I spent 2 weeks in Scottsdale, Arizona at the Mayo Clinic to see if they could help me. I met with several doctors, but they all agreed with the diagnosis I received here in Wichita. This is when it truly hit home that I would deal with this pain for the rest of my life. At this point Tanner’s family started to tell him not to marry me. They were blunt about it and discussed it in front of me. Part of me understood their concern because after all, who wants their child to marry someone that will be in constant pain and have health issues for life. Part of me even felt guilty for not just walking away from him so he wouldn't be tied to me. "Do I really have the right to do this to Tanner?" is the question I struggled with. In the end my question didn't matter because Tanner's love for me is stronger than the pain of Fibromyalgia or Rheumatoid Arthritis. His love for me is not superficial. Tanner loves me in sickness and in health- it is just unfortunate that the "in health" was the time we were dating and the "in sickness" is for the rest of our lives. He made a decision to stay with me even though it drove a wedge between him and his family. We thought that my health problems would be the toughest thing we ever had to face together, but we were wrong, it seems like those problems were just preparing us for the heartache to come.


A year ago I had to fight to be able to walk down the aisle on my wedding day. The pain was that bad. My parents were not sure how I was going to possibly walk down the aisle and then stand through the ceremony. Tanner couldn’t touch me, my parents couldn’t hug me, and I couldn’t function like a normal 18 year old. I was taking my college classes through Wichita State University at the time. My mom had to drive me to school and wheel me to my classes, because I couldn’t walk.  The car ride to and from college was painful. By the time I actually got in my seat for class I was in so much pain and I was so exhausted that I could barely concentrate on the lecture. Even though I felt horrible and I was in constant pain, I “looked fine.” I got so many stares from other students for being in a wheelchair. They thought I was just being dramatic and looking for attention. I was shunned by many and actually kicked out of a study group after I had to start coming to study group and class in a wheelchair.  So, not only was I dealing with constant pain, but I had to deal with people who judged me by how I looked. Wichita State University does not offer many online classes, so I ended up transferring to Fort Hays State University so that I can finish my degree all online. FHSU has been such a blessing to me.


Now, you might be thinking something along the lines of “Well I saw a commercial for some medicine that can cure your Fibromyalgia. Why don’t you just take the medicine?” Oh yes, I have seen this commercial too! The lady on the commercial takes a little pill and is able to walk quickly across the room and do her gardening all while smiling. Yes- I actually did have someone say that to me. I tried that little pill (Lyrica) and unfortunately it turned me into a zombie instead of a happy gardener.


I am not currently on any medication for either illness. Here is why I am not on anything  for my Rheumatoid Arthritis and Fibromyalgia- the medicines have side effects. 


Some of it put me in "La-La land" the whole time I was taking it. 

Some of it made my face swell up and turn red.

Some of it made me gain weight. 

Some of it made me nauseous. 


But, the scariest thing about these medicines is that they don’t know what affects it could have on babies and fertility. These are new drugs tested on older people. These drugs were not designed with the 18 or19 year old in mind. Someone who is 80 doesn’t need to worry about the side effects the medication will have on her future children. I will remain off of all medication for the Fibromyalgia and the Rheumatoid Arthritis until we are completely done having children.

Six months before we started trying to have a baby I stopped taking all the medicine I was on.  It was tough and my pain intensified, but I knew that a healthy baby would be worth it and I didn't want to do anything to jeopardize the health and well being of our children.


When I became pregnant my Rheumatoid Arthritis pain remained, but the Fibromyalgia pain was gone. Completely gone. The doctors said I was in remission. I could dance, walk, ride my bike, and hug my family! It was amazing to be almost pain free. I felt like I was in a dream and everyone around me was so thankful to have the "old me" back. My mom decided that I just might have to stay pregnant for the rest of my life and start my own reality show: 36 Kids and Counting! After doing some research I realized that the chances of my Fibromyalgia coming back after giving birth were high- it almost always happens. Not only does it usually come back, but it usually comes back with a vengeance. I decided to hope for the best- hope that Robby would "reset" my body. 


We think that since my health issues are autoimmune problems, his immune system took over for mine. He gave me one of the most precious gifts that I could have ever asked for- remission. My pain is starting to come back, but nothing like before. I can still walk and I am even running short distances right now while I can.  I still struggle with things such as tying my shoes, cutting my meat, and I am still unable to drive.   I accept hugs from anyone and everyone who wants to give me one because I am so thankful for the hug that is pain free. I hold Tanner's hand as often as possible and enjoy a good walk while I am able.

Robby did something for me that the doctors and new medications could not do. Robby gave me something so incredibly precious- Tanner can hold me at night, my mom and dad can hug me, and the girls can dance with me on the Wii.
 

Whenever I do something- like hug my husband I think of Robby. 

When I get up in the morning and run- I think of Robby. 

When I walk in the mall- I think of Robby. 

Thank you my sweet little boy for this precious gift you gave me. I could come out of remission at any time, but for now I plan to take full advantage of Robby’s gift to me. I plan to appreciate each and every second of my pain free time. When I was pregnant I would thank God everyday for giving us Robby, and I still thank God everyday for giving us our precious little boy. He might have only been with us for 23 weeks, but his impact was absolutely incredible. 

Thank you God for giving me my sweet little boy, even though he isn’t with us anymore I feel him with me with each pain free day I wake up, every hug I give or receive and with each step I am able to take.

No comments:

Post a Comment