November Seventeenth.... 2 YEARS!!!! Lessons Learned

Two years ago yesterday my life changed dramatically, but not as dramatically as we thought (which is a wonderful thing). Yesterday was the 2 year anniversary of my mg (myasthenia gravis) diagnosis, and I am back to being me, but probably a better me because of it. It was HARD for a long time, it effected about everything and everyone in my life (to a small extent I guess it still does), but life is good and my future is bright. I am in a non-medicated remission... which I was told would never happen.

For a LONG time I have wanted to share a few things I have learned through all of this, so this will be a LONGER post (I will limit it to 10) and you do not have to read it (not that you ever have to read it) but it will be good for me and my posterity to have a record.

This Carrie Underwood song always seems to come up in my head (yes I live in a very musical world) every time I think about writing this post... so I think I need to share it:

Number One Lesson Learned: The Lord knows us FAR better than we know ourselves!
You know that whole "Faith in God also includes faith in His timing" saying? Well that is certainly true. Don and I had discussed having another baby in the February of 2011, and we both felt really good about it, but things just never seemed to work out that it happened...which was good because the baby would have been born right as I got sick, and there would have been NO way I could have taken care of a baby when the whole world was taking care of me. Then in October when our car broke down we felt again that it was time to try, so we bought a van...two weeks later... BAM! We actually had the Dr's appt set to get everything in order. Now that is something that is off the shelf for us, but I am grateful that the Lord knew me better and what I could handle. I have learned A LOT of sympathy for women who do not or cannot have children. I am grateful for the 2 wonders I have! :)

Number Two: The Blessings of the Temple are Literal and Eternal!
For my Grandpa's 85th birthday he asked for each of his descendants to write him a time when faith had impacted them, for Christmas we will get a copy of all of our families stories (SO EXCITED!!!)... here is my excerpt for Lesson Number 2:
"Upon thinking about a faith promoting experience I have had one come to mind constantly, but it is not one that I ever thought I would share, but I am grateful for the chance to share it with the people I love. 

As many of you know, last year at the end of October I got the flu, and it was just your run of the mill 24 hour flu, it came and went, but after it was over my eyes started to feel weird, so I talked to Don about it and we decided it was probably just a sinus infection. I went to an optometrist just in case my prescription had changed since I did not have any other symptoms. She said my eyes were fine and perfectly healthy. A few days passed and my eyes just felt really weird and by the end of the week I was starting to have double vision so I asked for a blessing, we did not have home teachers in our ward so Don and his home teaching companion gave me a blessing, and advised me to go see a doctor.That night was Leigha's 6th Birthday, and I just felt so weird. I remember looking at my mom across the table and seeing right through her to the kids on the other side. I knew something was not right, and that night my eyes started to look in different directions. 

The next day was Halloween and I went to the doctor and she said it was not a sinus infection and that it was not normal and she sent me to an ophthalmologist. We were lucky to get into an ophthalmologist that day. The ophthalmologist spent a long time with me doing a lot of different tests because at this point my eyes were no longer looking in the same direction and in my vision nothing was fixed and the whole world was contorted. I was seeing doubles and triples of things, and nothing was fixed, everything was just floating until it got to the center of my vision when it collided with each other (the world was a completely new place). She said I needed to see a Neurologist and quick, that it could be a brain tumor or multiple sclerosis and I needed to get it checked immediately. I remember being nervous but knew that I needed to be strong for my children and carry on with business as usual, so we went trick or treating (I was a pirate, having one eye covered seemed to help). I remember feeling that I wanted to cherish the moments because I did not know what would happen.  

I had an MRI that week and thankfully it was not a brain tumor, but we had no idea what was going on. The days went on and by the end of the week I was a big mess, something that had started as the flu had now effected my vision, the muscles on one side of my face no longer worked and my skin drooped because the muscles would no longer hold them up and it felt numb, I had a hard time speaking because I would slur my words I could not chew or swallow food after a few bites, at points I felt like I could not breath or catch my breath and the muscles in my arms and legs were not performing the way I wanted them to. I had to wait 2 weeks to meet with a Neurologist and we were being told everything by everyone, but the main consensus was that it was just stress. The whole time all I could feel was that I NEEDED to go to the temple. 

My wonderful mom was so loving and willing and she volunteered to take me to the Mt. Timpanogos Temple. Since all of this had happened the only time I had really left the house was to go to church or doctors, and that was really hard because I was so self conscious about how I looked and sounded. I remember having the same anxious feelings about attending the temple and doubting if I should even go, but the spirit urged me on.  I wondered would people look at me? Would I be able to say what I needed to say clearly? Would my offering be accepted? We got to the temple and the first thing I did was walk right into a wall, my mom took me by the hand, and then just walked with me. She is a temple worker at the temple so a few of the people there knew what was going on and I was already in their prayers, and on the prayer roll. I could literally feel the prayers of the Saints in the temple help me as I went through the whole experience. 

We decided to do initiatory and I remember going in with my fist proxy initiatory and hearing the blessings and as I listened to the blessings I felt my body actually being healed. I thought it was amazing and I was so grateful that I had decided to go to the temple, then as I would leave to wait to do proxy for another name all of my infirmities would come back, and then I would hear those blessings again as a different proxy sister and have the same healing throughout my whole body, and again it would leave me as I prepared to do the work for another person. This happened several times, it was an amazing experience. As I left the temple I had this overwhelming peace… I understood that the blessings we receive in the temple are literal and eternal, and physical and spiritual. I was not receiving the blessing for myself at the time, but those blessings are blessings I will have for eternity, and my body at that time was spiritually blessed. I entered the temple knowing I had faith, but not knowing if I had enough faith to sustain me through the trial my family was going through. When I left the temple I knew that I had enough faith and I was able to see more clearly the blessings this trial was giving me and my family. It was still hard, but I knew that the promises of the Lord are real and whatever was to happen was according to His will.

I am so grateful for a LOVING Savior who suffered ALL of our pains, weaknesses, infirmities, insecurities, and illnesses, and that He has provided ways to bless us. I know that we are prepared for every blessing, and every trial, and both of those blessings come from faith in the Lord, Jesus Christ."

Lesson 3:The Day I Was Deemed "Disabled"

I had a huge conflict of interest in my prayers as we were facing my disease. I did not know what the road ahead looked like, but I knew that it was going to be very expensive, very fast. My medications alone are almost $200 a month, and then you add in going to the Neurologist every 2 weeks for 4 months and then once a month for 4 more months, plus my biannual testing of cat scans, pulmonary heart test, blood work, nerve and muscle stress test, etc. etc. etc. I knew we would need help and with my diagnosis that I would probably qualify for disability medicaid.I remember praying that we would get it because I was carrying a huge guilt of how I was taxing my family physically and emotionally and how adding financially would devastate us. The process was hard, and the day I got the letter I was happy and then it sank in... I am 27 and disabled, and relying on the government to help me with my medical bills. That was something I had NEVER planned in a million years, and it hit me really hard. After the initial elation that sincere prayers had been answered it sunk in that I was never going to be the same or be viewed the same...so I took a bath, and just cried and prayed and cried...and I remember having the MOST distinct feeling almost as an audible voice... " I took on all the pains and infirmities and the illnesses of the world, and you would never think of Me as disabled." My tears of sorrow instantly became tears of joy and my perspective was changed as I looked at this as another way to partake in the AMAZING gift of the Atonement, and as another testimony that I am known to my Savior, and not alone in anything EVER! What an amazing and special gift we have, and although I will never fully comprehend the love He has for me I am more able to comprehend and strengthen my love for Him. I am now in another state and am being blessed to not have to be on disability... hopefully a blessing that will last a long time.

Lesson 4: I Want to be A Nephi, not a Lame-an

I will be honest with you, these past 2 years have been HARD (especially the first year!) and a lot of the time I really just wanted to whine and complain... and a lot of the time I think I did. I remember feeling really sorry for myself and then remembering the lesson of Laman and Lemuel vs. Nephi and Sam. They were put in the same situation as each other, one group CHOSE to be optimistic and happy, and the other group CHOSE to be pessimistic and whiny. I decided I could make a CHOICE too, and to not murmur. So whenever I felt like a wanted to whine and complain I just said murmur murmur murmur until I was smiling. It is actually quite a fun thing to say, and even funner to see others reactions when I did it in public :)

Lesson 5:  Be Your Own Kind of Beautiful

I almost named this one...I'm so vain! (you probably think this song is about you... another song AHHH!) I did not realize how much my happiness depended upon how I looked instead of who I was... and I don't think I am really a high maintenance or really even cared too much about my appearance. The medications have really taken its toll on my body to the point where I did not recognize myself at all. I gained 40 pounds in 2 months, lost a lot of hair (except where the mustache grew in), none of my clothes fit, and as my husband so lovingly told me I looked like a line backer, or as Leigha said I looked like the chick from Puss in Boots! I had a hard time going out in public (only to church, and the dr. for several months) not only from the shame of a droopy face and non-aligned eyes, but because of my normal physical appearance as well.I had to walk slow, and I was often dropped over like an old lady. One place I refused to give up was the Dollar Tree, I was shopping (at opening when no one is there) and looking at cleaners when a wall sticker caught my eye... it said "Be your own kind of beautiful". I burst into tears right there in the Dollar Tree, it was exactly what I needed. I needed a reminder that I am beautiful no matter what I look like, and that I needed to not be so hard on myself especially in front of my precious daughter who hears everything I say, and models her actions after mine. It now proudly hangs under my mirror in the bathroom as a reminder to me that I am beautiful in my own way, even when I have facial hair that could rival a trucker.

I am being brave and sharing some pictures Leigha took of me on her camera, I did not know that they existed, but I am grateful that they do. 

Lesson 6: The Power of Music in Healing the Body and Soul
As we have already established (or in case you hadn't noticed), music plays a huge roll in my life. I feel that music can speak to my soul, and it has a lot of effect on my spirit and attitude. A few weeks after I was diagnosed one of the sweet ladies at my moms work gave me a Hilary Weeks CD. I LOVE listening to it. There is one song that I felt was written just for me (probably a million people feel this way). I remember listening to it while struggling with my hands to do leather work and feeling alone and just crying, not in a bad way, but in a loved way. I remember listening to it before and after discouraging dr.'s appts. I remember listening to it A LOT! Everyone really tried to understand, but I did feel very alone, and when I felt alone I felt selfish. This song helped remind me that I am not alone and it helped keep me from murmuring, but to have true perspective. It helped me understand that I do not need to know all the answers because He knows them. I do not need to carry everything on my own, because really I never do, I ALWAYS have help.

Now I love to listen to this song, also by Hilary weeks. I love the woman I have become because of this, and I love the woman I am becoming. I thought for a while that my life was over, there about 9 months where it was so hard to function as a person, if I had to hold a sign I would hope now that mine would say:
Life has been hard, but totally worth it. (As a former suicidal person (when I was a teen) that is a great realization).

Lesson 7: Loving Visiting Teachers can change not only your day, but your life!
With going through the whole medicaid process I had to go and take a class to declare which policy would be best for me. By this point I had gained so much weight that the only clothes that would fit me were my maternity clothes. It made me very sad to wear them when at that moment I would give ANYTHING to just be pregnant (that was the plan after all.... silly plans :)). I went down to the county building and waited for the class, as I sat there pregnant woman after pregnant woman showed up. We went to the classroom and I kid you not, there were 15 pregnant women and me.
They gave the whole class (which was solely focused on pregnancy) and I sat there and listened, embarrassed, and hurting. When the class was over I went to the instructor and explained that I was not pregnant but disabled. I had to have a different presentation, but they did it super fast for me. The experience was very draining and painful, but I did not want to admit that, to anyone, ever. I cried in the car the whole way home.
I prayed a lot and that night there was a knock on the door. It was my sweet visiting teachers Callie and Aubrey, they had an impression that they needed to bring me dinner so they went and got KFC. They had NO idea what had happened that day, or how I was feeling. They were just 2 loving friends who felt prompted to do something and did not know that their actions have changed my life.

Lesson 8: We cannot see others trials, physical or not
When we were in Utah and I was not feeling and my kids were wild I would take my kids to Provo Beach Resort to play on the playground (my loving siblings provided me with a gift card so I could take my kids and they could have fun and I could be a lump). One of the times we were there, the kids were on the playground and I was laying on the benches reading my scriptures. I could not physically sit up. There was another family there, and the mom was also sitting on the benches across from me. I instantly judged her, and I should not have... I have learned. She was tattooed all over, her hair was unkempt, her kids were a mess and I cruelly judged her in my mind.
We started the typical mom conversation. How old are your kids? What are their names? You know the like. The conversation changed when she asked... Are you on steroids? (an odd question, but it was pretty obvious that I was because of my moon face). I said yes and we got to talking, it turned out that she had MS, she was there for the same reason that I was and I felt awful that I had judged her so harshly.
We ended up talking for about 2 hours, it was nice to have someone to talk to who could understand being a mom and dealing with a disability. We talked about all sorts of things, we were so similar, we had gone to the same doctors, had many of the similar tests, dealt with the same judgments from others, and other things.
I learned that day, the hard way, that I cannot look at a person and begin to understand who they are, where they are coming from, what they are dealing with, what their heart feels. I realized that everyone is going through a hard time, and everyone is being disabled in some way. Mine at that moment was my disease, but before that I had been disabled by selfishness, or my past, or by my own unrealistic self expectations, or a pluthera of other things. And I realized that everyone is dealing with things, some things are seen but most are not. I have tried to be kinder since that experience, I have also tried to be more patient because I learned if we are patient with ourselves and others than we are given opportunities to help.
I realized I wanted to be a force for good, and try and brighten people. I set a goal to say something kind and genuine to someone daily. A lot of times it has been awkward and I don't know that what I have said has helped but I hope that it has... it has helped me. It has helped me look for the good and I feel that I have become less harsh.
In our last Stake Conference Sister Gay said something that has resonated in my mind. She said, "We do not have the capability to judge. We do not have the privilege to read between the lines." I loved that! I hope I can live by it more fully, I am still working on it (A LOT!).

Lesson 9: When it is Right, the Lord ALWAYS Prepares a Way...even if it takes while or is SUPER fast!

When we decided to move to Elko, it was a very quick decision as in less than a month and a half we were here and settled (that includes trainging time, and it would have been sooner, but we stayed in Utah an extra week to participate in Anne and Adams wedding).... and if you know Elko, that is really fast. It was a hard decision to come here, but an AMAZING blessing! I was starting to get well and leaving behind my support system, family, doctors who knew me and understood me, and all the other amazing blessings of Utah was a trial of faith, but we felt it was right and here we are.
Our biggest concern was that Elko does not have a neurologist and if something were to happen we would be left here with no way of getting appropriate help (especially if it were to effect my breathing). And losing disability insurance was also very unsettling because it is very expensive to be sick. With all these factors in mind we still decided to come because we feel that this is where the Lord wants us for now.
When we lost the insurance and the doctors, I knew I would have to do it on my own. I worked hard and weaned myself from my medications. It was scary but at the same time freeing! I went from taking 17 pills a day to now only taking one for my thyroid (and vitamin supplements when I am a good girl). I have had a relapse but was able to manage my way through it on my own. I know I will not always be in remission while we are here, but I feel that because we are faithful (and we are here) that we have been so blessed with health and understanding.
We were also blessed with finding our apartment. everyone told us it would be months before we would find something but it took one day, and we got the EXACT floor plan I wanted on the bottom floor for when I am not in remission. To me it was a confirmation that this is where the Lord wants us and the He knew my concerns and needs.
Another thing was finding a pharmacy that would even have my medications. I called before moving here and there was no one that would. Thankfully the first week I lived here I met Michele. Her husband is a pharmacist and he has made sure that I had everything I needed, and helped to make it the easiest on me. The Lord has placed so many people and blessings in my life as a result of living here.

Lesson 10: Laughter is the best medicine
I love to laugh, and laughing at myself helped me a lot. Although I was self conscience a lot about how I looked, when it wasn't frustrating it was funny. When I could not speak, as long as I was just with my family, it was funny. When I could not chew, it was pretty funny to have food slipping down my face (i don't know that my kids will have the best manners because of it, but I also have an awesome Mother-in-law who is Miss Manners, and she has been able to right the wrong). When I could see through things, it was pretty funny, like a superhero. And when I was laughing I felt happier, that's how I am now. I love to laugh! (uh...oh... now there is Singin' in the rain in my head!) I love to find joy.

There are SO MANY other things I have learned as well. I hope to record them at another time, or even just as a draft, and some of them are more personal, like the love from family and friends.

Day#17: I am grateful that I have Myasthenia Gravis. I am grateful for my past. I am grateful for who it has made me. I am grateful for ALL the love and support I have gotten from my Savior, my sweet husband, my amazing kids who have had to deal with a lot, my amazing family and friends, and even complete strangers! I am grateful for these lessons and many others I have learned. I am grateful for the plan of salvation and the opportunity to have a mortal body, even when it is hard. I am grateful that someday I will get to experience a perfect body and won't have the cares and concerns I do now, but I will get to keep the lessons.