Facebook Responses

Well....I have to say, I was quite surprised by the response I got to my blog post on Facebook! I didn’t think anyone would even look at it, honestly. I hadn’t told very many people about my lupus, and it was kind of my way of saying, “Hello everyone, sorry for being so antisocial and depressed lately. I am just dealing with something really hard, so don’t take it personally.” I have been struggling so much the past couple of months that the support I got from everyone made me very emotional. No joke, I woke up on Sunday morning (having not slept very well, mind you), showed my mom some of the messages I received, and I just started sobbing! It was great. Thank you, everyone! 

I didn't sleep very well Saturday night because I was having severe chest pain, and I couldn't lie down. I was planning to return to Rexburg on Sunday, but I was exhausted and still in quite a bit of pain. I stayed home all day Sunday. I was tired. I felt sick. I was tired of feeling sick. I had a breakdown Sunday night, and I had a long talk with my parents about what the rest of the semester would entail. They made me feel so much better, and they reassured me that they would do anything to help me feel better. My parents...let me just tell you. I love those guys. They are the best people ever! They are my best friends. I don't know what I would do without them. My mom literally calls me, texts me, or checks up with me multiple times a day when I’m at school, and, when I am home, she is there to cater to my every need.  My dad is the most supportive dad, always has been, and he is always there to help reassure me. I never even have to ask for a blessing…he just gives me one.

Sunday night my dad slept on my bed, and I slept with my mom in their bed, just so she could check up on me, and believe me….she did. I had to sleep sitting straight up, and my body can’t fall asleep like that. So, mostly I just laid there all night, in pain, and ready to shoot myself. It never took her more than a few seconds after I sat up to ask me if I needed something, or if there was anything she could do. She ran a bath for me at 4:00 am. That is dedication, folks.

I called my doctor this morning and he said that I have come up with another lung infection. They are SO fun, let me tell ya! Funny story: We were playing a card game for FHE tonight, and my brother kept making me laugh. I told him not to, and I think he took it as a challenge. Plus, everyone knows it’s harder not to laugh when you are trying not to. Anyways….I won’t tell you what happened, but I started laughing. Laughing + lung infection = NOT FUN! I couldn’t stop laughing, and with every gulp of air it felt like I was being stabbed in the abdomen. I stopped laughing. I started crying. I started yelling at my brother, because he was still laughing. And then I started hyperventilating, and my mom had to come and help me relax, because I couldn’t breathe normally. I can laugh now, because I am not in any pain anymore…but for a second there, I thought I was going to die.

So this weekend has been just the greatest ever!! But, seriously though…the support I got from everyone really did lift my spirits, and helped motivate me to keep blogging. I have had this blog for quite a long time, but never with any purpose. I feel like now it has a purpose. To help lift people up, and help them to understand that no one has a perfect life, and everyone goes through crappy times. I am not afraid to share the good times as well as the crappy times, because although people like to hear about someone’s perfect life, they also like to know that they are not alone in their struggles. Struggles are a part of life. They are a way to help people grow, and learn, and have empathy for others, and to help others, and know how to help them. I hope that this blog will be a way to help some people know that they are not alone. 

Premature Aging & Motherhood

Well, I came home for the weekend again. I didn't feel like sitting in my apartment alone this weekend while all my roommates had plans...so I wasn't going to mope around! I feel a lot better here right now where I am in my element, and it helps me to relax.

 I was on pinterest today, and I wanted to look up some easy workouts for people suffering with lupus, but instead I found a bunch of lupus jokes that made me laugh! It feels comforting to know that people do understand how I feel. Lupus is an invisible disease, so no one can look at you and see how sick you are. They think because you don't look sick, that it can't be that bad. They can't understand how hard it is, and I don't blame them. It is just hard sometimes, because I feel like I have to suck it up because I know people will criticize me, and just assume I'm being lazy or overexaggerating. My favorite joke said that, when you have lupus, you get to tell your parents, "you'll know how I feel when you get older". So true! I'm like an old person with my aches, pains, and brain fog...also... I'm losing hair. It seems every time I run my fingers through my hair, I pull it out. I am SO gentle with it, yet it still continues to fall out. It just keeps getting thinner, duller, and straighter, and it stinks... :(. I fear one day I will have bald spots. (Pray for me, haha, I would look hideous bald). I kind of like documenting the stages that I go through in this whole lupus process, mentally and physically, because it helps me to vent my frustrations and concerns, while also motivating myself to keep moving forward. Hopefully, eventually it will help someone else who is struggling (if they happen upon my blog for any particular reason).

That is just an update of my life, but I wrote this post because, right now, I am sitting in the bedroom that I decorated (sparkly lights and all), and I am reading Stephanie Nielson again. I have been following her since a year after her accident, and I rediscover her every few months. Every time I start reading her posts regularly again, it amazes me how strong she is. I love how she talks about her children. She talks about motherhood so highly, and you can tell that she knows how important it is. I cannot wait to be a mother, and I can think of no other thing that will make me feel so fulfilled. There is a video about her youngest daughter, Charlotte, made for the Nielson family, that she posted on her blog. It has this beautiful lullaby in the background, and so I looked it up. (I want my children to be exposed to music from a very young age, and form an appreciation for it.) Turns out, it is from a collection of children's lullabies. I have had it on repeat since. I know it sounds pathetic, but that is the kind of thing I want to do for my children. I want my children to listen to music, and read stories, and have imaginations, and love others, and love the gospel, and be good citizens, and be goofy, and helpful, and that is NOT too much to expect! I aint raisin' no unedicated little hooligans! It's hard, because I am so baby hungry...but I'm not even dating anybody! Husband...you better hurry up and find me already!

I know Heavenly Father has a plan for me, and that it does include the opportunity for me to become a wife and mother. My newly found health issues have discouraged me on many of my goals, but never this one. I know it will be a struggle to raise a family with lupus. Some days I will feel exhausted and not want to make a nutritious dinner, or clean my house, but I will probably do it anyway. I was talking on the phone with my dad during one of my low moments, and he gave me a few words of comfort. He said that they are always here for me, and that if I am feeling tired, that they are always here to help me. I am probably going to take you up on that someday, dad!

I am so grateful for my family, and good friends! I know that right now is a hard time in my life, but I will make it! I just need to stay positive, and focus on becoming the best person I can be.

Looking Forward to Better Days

I don't know what brought this upon me, but lately I have been longing for warmer weather. Maybe it's the fact that it is starting to warm up a little and the snow is melting, but it's definitely not warm and it's CRAZY windy. I watched the movie Soul Surfer with my roommates yesterday, and I have been thinking a lot about the summer...and Oregon. When we went to Oregon as a family, this past summer, I made it a goal to someday live there, and be a beach bum. Great goal, right? I agree. I just keep remembering how beautiful it is there, and how good I felt the whole time. I honestly just never wanted to leave. I could definitely see myself setting up a cute shop there and raising my family. I even researched how hard it would be to go to church. The closest ward is an hour away in Portland, but that wouldn't be too long of a drive on Sundays! As you can probably tell, I put a LOT of thought into this. I guess it gives me hope to know that I will probably feel better by the time I get out of school, and I will be able to focus on myself, and being the best me I can be, inside AND out. I can focus on my health and try to make good spiritual goals for myself as well. I am focusing on my future.

I have all of these things that I want to accomplish when I get home. I don't want my lupus to make me feel like I can't accomplish the goals that I have set for myself. I still want to spend a lot of time outside, and keep myself as active as possible. Even if I just do small things, I need to keep myself moving. I want to read, write music, go camping, kayaking, paddle-boarding, hiking, and lots of other things. Hopefully I will feel good enough.

Along with the goals that I have for myself, I also want to use this disease to help others. I don't know why I have been given this trial in my life, but I know a lot of really good people who have been given much harder trials. I don't want to play the victim card. I don't want to use this as an excuse to become lazy and antisocial (that is how I feel right now). I read Stephanie Nielsen's blog NieNie Dialogues, and she really is such an inspiration to me of how trials can't stop you. She was in a plane crash and severely burned her entire body. This happened many years ago, and yet she is still recovering. She blogs about religion, family, and just life in general-and it gives me hope. She is such an amazing mother, teacher, role-model, and she doesn't let her afflictions hold her back. (go check her out!)

                                               

 I am really struggling here at school right now. I feel like a loser, because all of my roommates have all of these friends, and boyfriends, and all I can think about is going home. I know there is a day when I will feel better, but I will just have to be patient and live more in the moment. I feel like I am living so in the future at the moment, that I forget to live! I don't want that to happen!

This post is kind of throw up (sorry!), but I feel like I need to remind myself of these things and not let myself get discouraged. I have been feeling very discouraged these past couple of months, and I need to focus on being happy in my trials instead of just waiting for everything to get better in order to feel happy.

I hope that this summer I can be able to improve myself, improve others, and do the things I need to in order to become truly happy! That is my hope, but for now I will just keep moving forward and living the best that I can!

Updated Update

So...I had a doctors appointment last friday morning. There was a lot of mixed emotions for this appointment. My mind was constantly thinking of all the worst case scenarios, so I was at least excited to know for sure what the deal was. I was going to drive up Thursday night after my class, but it snowed...A LOT. I also wasn't feeling too great that week, particularly in my fingers. It narrowed down to the fact that my parents would have to come and get me. That is a lot of driving for them, and I felt very guilty! I sure was glad that I didn't have to drive though.

We woke up at 5 o'clock friday morning and left back to Utah. I think I kind of forgot what this whole trip was for, because when we finally got to Layton, my heart dropped and I felt sick. I just sat quietly in the car. I got so nervous. This was it. I was going to find out what was wrong with me.

I went into the doctors office with my parents, and I had to fill out a form that described where and how badly I hurt on a daily basis. Then the doctor came in. He asked me a lot more questions and then he had me lie down on the table and he poked, prodded, bent, squeezed and tested reflexes. He then showed me the test results. The test results definitely showed an autoimmune disease, although it is hard to tell at first which one. Most of the signs lead towards lupus, and we have eliminated rhumatoid arthritis, and most other autoimmune diseases, except for one other. It is possible I have both, but we still don't know for sure. I am no doctor, but I'm pretty sure it's lupus.

I was relieved to know that it was no worse than we were already expecting, but it is not good news. It is kind of hard to think that I will live with this my whole life, and considering the pain I've been in lately, I hate it. The doctor prescribed to me a stronger dose of an Aleve type medication, and another that I will take every day for probably the rest of my life. That one won't start working for about two months, which is why he prescribed the Aleve. He told me that if I didn't start feeling better, that I would need to go on steroids.

It was a hard weekend, and very emotional. I probably cried AT LEAST twice or three times a day. At church my mom and I both had a little break down, and it was embarrassing. Dang you, "I Know That My Redeemer Lives".

Ever since I have come back to Rexburg, it has been a struggle. I started out taking the Aleve, but around Tuesday, I could barely get out of bed, and I just can't even explain it. I was so exhausted, and the pain in my arms and hands was almost unbearable. I couldn't even lift them to get undressed, or lift anything heavier than a small bag. I called my mom that night bawling. I was having a break down. So the next day I called the doctor. I am now on steroids, and it has been gradually better. I will just blow up like a balloon and get fat!

I just am struggling with the fact of life right now. I feel so useless, and school seems pointless to me. I keep having to tell myself that I just need to get through at least this semester. It feels like an ETERNITY away. I just want to go home so that I can chill at home with my mom, watch BBC, have tiny adventures, and be taken care of haha. I know it sounds pathetic, but my life is kind of pathetic right now, and I feel like I am wasting anyones time who wants to be my friend here. I don't ever feel good enough to do anything fun! Sorry roommates! I'm usually more fun!

Anyway, that is the update. No one reads these except for my parents, so it's kind of more personal, like a journal. I just need something to get all of my emotions out sometimes.

Update

Well I am up in Rexburg again, and I will be here until April. My last post was about remaining positive in hard times, and I think I need to start taking my own advice. My last semester of school I got a lung infection, and, from that point on, I felt very sick and my ENTIRE body hurt. My roommates would always ask me why I would just stay in my room, and I didn't quite know the answer. I just didn't feel good! When I came home for christmas break, I was exhausted! I thought it was just the stress of school, and having to move apartments. One day, my body hurt so bad that I just didn't even want to get up. Ever. My mom decided that we needed to take me to the doctor, and so I went and had some blood taken for testing. I remember feeling so stupid and overwhelmed at the doctors office, because he looked so perplexed when I told him all of my symptoms. I wouldn't get all of my test results for about a week, and I had to head up to school.

About a week into school, I was on the phone with my mom, and she got a call on the other line from the doctor's office. I stayed on the line while she talked with them and, it did not sound good. I knew something was up. When my mom got back on with me, she explained that the blood samples came up really strange, and the doctor was speculating Lupis. I didn't really know what Lupis was, but hearing those words just made me so scared. I was not healthy. I also knew that Lupis is also an autoimmune disease, so it would affect me for the rest of my life. I think I was in shock. I just started to cry, and I didn't even know what to think. I tried to keep my mind off of it, but my body kept constantly reminding me. You see, Lupis is closely related to arthritis, and it attacks your body. Every day, I have to deal with this pain. My hands ALWAYS hurt, no matter what. Even if I take pain pills. My shoulders and wrists hurt very badly at night, and my legs and hips hurt pretty much if I sit down for more than 20 minutes. I feel so weak all of the time. I can't even do the simple things without being in a lot of pain. For example: getting dressed, doing my hair, and showering are all things that I dread. Pillows feel HEAVY to me.

After that phone call with my mom I was really scared, and I just kept thinking of my future as a mother and wife. How was I supposed to do that if I felt as weak and worthless as I do now? How was I supposed to do anything that I had imagined myself doing in the future? Travel? Perform? None of that seemed possible now. Later that day I got a call from both my aunt and my dad. Both of which gave me a lot of comfort. I had people behind me who loved me, and would help me. My dad helped me a lot by saying that autoimmune diseases are definitely something people deal with, and live full lives with. The pain goes and comes kind of like going into remission, and there would be times when I would feel normal. He also explained that my doctor was not a specialist, and that he might be wrong. That made me feel better and worse at the same time, because it could either be better or worse than expected.

All I know currently, is that they think I have an autoimmune disease called Lupis, but they aren't sure. I also know that I am in a lot of pain. I don't really know how to feel about this, but I sure do get emotional a lot. It makes me depressed thinking that there is a chance I will feel like this my whole life (except for remissions here and there), but since we aren't sure exactly what it is that I have, we don't really know what to expect, and that scares me even more. I have another doctor appointment on January 31st, that will hopefully enlighten me a little bit more. I can't wait until then!

I will be moving back home after this semester, and I most likely won't return to Rexburg. I am going to have to live with an Associates degree for now. The medical attention I need isn't available to me here, and I just probably won't feel like driving 3 1/2 hours to and from Utah every other weekend. I just need to go back home, where I can be taken care of properly I guess.

Note to self: I need to remain positive, or I will ruin myself. It's hard, but I CAN do this!

Not to the reader: There is always a light at the end of the tunnel. I would suggest turning to the Lord, and your family for love and guidance through hard times. I could not do this without them! I am not going to give up on those dreams I have for my life. Neither should you! There are going to be obstacles in your life, you just need to find your way around them.

Hell Has Frozen Over...Literally

For those of you who don't know...I am currently living in Rexburg, Idaho, which just happens to be in the top 25 coldest cities in the United States. By cold I mean that it hasn't reached 20 degrees for over 2 weeks! It's great. Anyways...I have a hard time with this, because I HATE being cold. I don't mind the snow as much (although it is a pain that Rexburg hasn't heard of plowing), but the cold kind of drains at your soul. On top of all this, I am really sick...so my life pretty much rules. All in time for finals week. Regardless, I have to find a way to keep myself positive, and I seem to have found a few ways. My days consist of: watching Parks and Rec with my roommates, Late Night with Jimmy Fallon videos, listening to music, calling my family on the phone, and cheesy Christmas movies. I think the key to happiness is laughter. I love to laugh. You can always find joy and a little bit of laughter, you just have to look around and find it. Just be sure to look INSIDE to find it, because outside is FREEZING.

Here is a link to some of my favorite Jimmy Fallon Videos (I think all of them are musical...sorry):
http://www.youtube.com/watch?v=2mjvfnUAfyo&list=PLrPtoOPZuYaIevK2pRFNIJ-aWdIVm1z74

Music makes me happy. Here are some songs for you to check out:

Good Tunes...Good Life

I am a HUGE music lover...and I just happen to be loving a few songs right now that I wish to share with you. Some are fast and some are slow, but they all make me happy. Enjoy :)

EmmyLou-First Aid Kit
I Can Feel Your Heartbeat- A New Normal (feat. Jordan Frye)
Midnight City- M83
Wouldn't It Be Nice- The Beach Boys
Across the Universe- The Beatles
In My Life- The Beatles
Walking On a Dream- Empire of the Sun

p.s. enjoy the lovely pictures of the sunset that I took the other day with my friend Ashley.