To pass the Time

Since graduation I've been searching for a career job, which is much harder than I anticipated. Between applications and interviews I've been passing my time by tatting. Here are a few pictures of my creations so far: 

What do you think of them?! I just can't do too much at once or my hands are immovable and shaky all the next day:) 

"Pain is a Gift"

These four words made my world come crashing down around me during Stake Conference, a regional church meeting. The speaker said these words, "pain is a gift," and it shattered my reality. I have constant pain. Pain that makes me incapable of moving somedays and bawling in the fetal position on the other days. In the very least, my pain is the dull aching reminder at the end of the day that I can't ever forget. How is this supposed to be a gift?! 

I understand that the speaker was making a great analogy between pain and the Gospel. It went something like this: leprosy is a disease where the pain nerves die off. So the reason that lepers look diseased or like their skin will fall off is because they can't feel pain to take care of their body. So pain is good to let people know that they need help to take care of their body. So pain of guilt or shame or sorrow in a way is something that is good because it promotes us to seek healing. And preferably the healing will come from the one true balm, our Savior Jesus Christ. 

But my pain never stops. It's hard. And very few, other than Christ, understand. I guess my pain is a gift: A very serious and very real push towards my Savior.

ABCs of Fibromyalgia

I have been trying to come up with ways to describe what my body is going through to people that just don't get it. One is: I'm always in pain and always tired. Another is: it's like my nerves never stop telling my brain I have pain or that I need sleep. But that doesn't cover very much of what people with Fibromyalgia go through. So here's my ABCs of Fibromyalgia:

A is for the Anxiety that can overcome me when I'm not expecting it

B is for the Bad days

C is for Chronic, you can't escape it no matter how well you're managing it

D is for the Depression, the dark toll that falls sometimes when the going gets pretty tough

E is for Eating healthy to manage my symptoms, less sugar less processed foods and more fruits more veggies more meat, which makes it rough to socialize sometimes cause our culture is so focused on unhealthy eating to facilitate social events

F is for being Forgetful, also known as Fibro Fog, I've forgotten the silliest things sometimes like names of family members or close friends as well as how to tie shoes etc

G is for the Good days

H is for Heat therapy, so relaxing and relieving of pain, electric blankets and rice bags are my good friends during the bad days

I is for how Fibromyalgia seems Invisible to everyone else, I don't like to draw attention to the fact that I'm miserable and I'll push myself through the pain and fatigue

J is for 'Just say no' to activities that cause pain and fatigue, and prioritize so I can do all that's necessary 

K is for those Killer tension headaches, for me, only caffeine can take the edge off of them

L is for that Lazy feeling that creeps in and makes me guilty for not being superwoman

M is for Muscle weakness and pain, sometimes just lifting up a fork to eat is rough. 

N is for what a big Nuisance it is, and how No one truly understands. It'll get in the way of all the fun, ... but then I get to create my own new kind of fun

O is for the Over active nerves, they are always partying!

P is for the Pain that lingers and travels around to different parts of my body

Q is for a Quilt to snuggle up in to try and forget the pain when I can't sleep

R is for Relaxation therapy to help my muscles not ache and be so stiff

S is for the Sensitivity to the cold and temperature changes whether they are drastic changes or not. 

T is for always being Tired but unable to ever feel rested after sleep

U is for being Unproductive and feeling like I'm drowning Underwater, but still doing my best to try and stay afloat

V is for the Vast ways that fibromyalgia can manifest itself in each individual person

W is for Warmth needed for my muscles to relax, warm showers and baths are heaven sent!

X is for (according to several MDs) the eXam and all other medical tests that proved I was the picture of perfect health and all this pain and fatigue was in my head... Ha ha Yeah right! Haha

Y is for the Yellow sunshine that brightens my day when I go for a walk and Yoga to stretch out my stiff muscles 

Z is for my Zany friends and family that make me laugh and smile through it all

Yes, it's hard to deal with but it makes me, me! Sometimes I do have bad days, or on occasion a really bad day. But I try to remember that my good days outweigh the bad days:) and God is with me through it all.

The Latest Escapades

It starts Friday, Valentines Day, the day of love and couples. I'm not a part of a couple, but a boy did ask me to spend that night with him by making dinner and watching a movie. It was fun, but not how I had imagined it going. I didn't get home until about 1:30am. By then my body ached and my mind was incredibly foggy. 

Saturday I didn't wake up until 1:00pm. I was stiff and achy, only stayed awake for about 3 hours. Soon I was asleep again until a dear friend came over asking me to go to a movie with him, right then! Do you know how hard it is to get moving after sleeping?! Do you know how much effort it takes to put on jeans and brush my teeth?! It really shouldn't be such a big deal, but it is. After a burst of action to get ready I collapsed into the passenger seat of his car to drive to the movie theatre. 

After the movie I could feel my body crashing. But I ignored it and afterwards ate a waffle infused with sugar. Such a bad move on my part! 

Sunday morning was difficult to get out of bed for church. I practically went through church with my eyes closed and just going through the motions like a zombie. I probably should have stayed home. BUT I really wanted to take the Sacrament, others call it Communion, to renew my covenants, or promises, I had made with God. I needed it:/ And another reason I wanted to go is I might be able to talk to a boy I like. So I went anyways. 

I had been over exerting myself for days and on Monday I took it as easy as I could. But that didn't help cause on Tuesday it all came crashing down on me anyways. I was in a review session. I had such intense pain I became nauseas and my body began going numb. My body started tingling and shaking. I knew what was coming. I got out of that room with all the people cause I didn't want to make a scene. In the bathroom I fainted. When I was able to come around to be able to stand and walk on my own, I went back to find an empty review room. I grabbed my things and began the long walk home. 

So maybe it wasn't that epic. But it was an adventure! Thanks to the best if friends I didn't have to take the entire walk home. They picked me up half way:)

The Curse of Sugar

I love sugar. But it hates me. I am lured in to the sweet smell, the delicious taste, the yearning for more and more. I can't just have one price of cheesecake or one homemade chocolate brownie fudge cookie. I need at least 5 because they are sooooo good tasting! 

Then I'm trapped with the sugary curse. I am weakened and become pained in every muscle. It hurts to move. My stomach revolts. My body aches and my eyelids can't stay open. I'm literally sleeping as I walk every painful step to and from campus. 

So, I try my best to stay away from the manufactured candy. No more Milky Ways. No more Reese's Peanut Butter Cups. :( Then I realized that I probably should stay away from the home baked sweets. No more brownies. No more cookies. Then after this drastic action not completely taking the symptoms away, I realized that in processed flours there are sugars. So then I began taking out all white and or processed flours. I was doing pretty good for quite some time:) well... Like three weeks. Then I decided to eat pizza. I only had two slices. Those slices hit me hard. I am drained. I can't stop yawning!! 

Was the pizza last night worth it? Probably not. 

Do I need to have more self discipline? Yes, yes I do. 

The good side to all this is that I can still have natural sugars. I can eat honey and real maple syrup, which are delicious! So I am coming up with great new recipes and trying to find substitutes that work for my old favorite recipes!! It's actually pretty fun!! I feel like a scientist in the kitchen. And have begun receiving the nickname of the 'sweet health nut' from my roomies:) 

I Have a Really Good Life... fo' reals

I can't seem to be able to count high enough to be able to count all the blessings I've seen in my life lately. I must be on the list of people that God pays close attention too. I definitely have had divine protection and loving care this first week or so of being back at school. 

My most favorite example is the amazing people I have the privilege of calling my friends. This past weekend I had plans with a few different groups of friends. Because of miscommunication on my part, my roommate began wondering where I was. She knows of my health concerns and does a great job of looking out for me. Of course after 45 minutes of worrying and not getting me to pick up the phone or return text messages, she and all the others she was with had a reasonable level of panic. As they searched the parking lot and neighboring apartments etc. I was having a lot of fun dancing and playing games with a good looking boy. 

Eventually my dear roommate and other friends were appeased upon my return:) I hadn't fainted and or been swallowed by the toilet as some of them thought. We all laughed a ton the next day as we all found out the entire story. 

What I found out that night were priceless gems. One: I love dancing with a partner that can lead well. Two: I have a high reputation for fainting. and Three: my friends care a ton about me. They are heaven sent and angels in my life. Nothing horrible happened that night, but if anything had, my friends would have been there immediately trying to help. They truly are the best! I love them a lot. God is constantly watching over me. That's a fact. 

Oh! And another random tid bit, I am sleeping a bit better! It's easier to get up on the morning, kinda. It's not as painful, so that makes it easier:) 

A New Start

I visited the doctor over Christmas break and got some new insights. I now take a B12 shot every month, on top of all the other vitamins and medications I have. I need energy to continue through this last semester of my Bachelors degree. Soon I will be a college graduate, but first I have to be able to get out of bed in the morning and pay attention in class. 

This year I made four goals/resolutions. I have one in each of four categories: physical, emotional, spiritual, and intellectual:). This will be a good year!

Christmas at Home!

I was able to be home for Christmas!! This was my first time spending this holiday with my family in a few years. It was nice to have the special traditions I grew up with celebrated again:)

Some of my favorite traditions were being locked in a room altogether as siblings. Or the homemade peanut brittle my dad makes. Or the way we celebrate my dad's birthday before we celebrate Santa coming. Or the way we all get pajamas as a Christmas Eve gift and put them on before reading Luke 2 and other Christmas stories.     

This year is the first year I've had to watch what I eat during this sugar infested holiday season. I made the decision before the festivities started to just throw out the smart eating and just chow down on all the sugar and sweets and white flour baked goods my family makes. That was a bad idea. Well, half a bad idea. I have learned my eating habits really do influence my aches and pains and energy levels a ton! So I've had the aches pains and sluggish body this holiday. I now have a great New Years Resolution! Eat right, ALWAYS!!!!

Pain and Blessings

I am a great person! I tell myself this every morning. But when I can't get out of bed until it's in the afternoon and haven't showered in a few days because I can't stand up on my own, it's hard to believe I'm great. All I see when this happens is me being an unproductive slob, with multiple days worth of bed head. Not the greatest picture, right? 

This week has been full of slob days. I have been doing just enough to get by. The pain is overwhelming. The exhaustion is unending. BUT it's in these days I turn to my Savior Jesus Christ and get to count my blessings:) Despite the imperfect week I've had, these have been some of my many blessings given to me that have brightened my day:

1: I made gluten free cake with pudding frosting for a work party. Best cake ever!!! It was a perfect balance of cake to frosting and was so deliciously moist! The blessing here is that it tasted great, but better than that I had the energy to masks it! Here's a pic: 

2: I took an essay based final. Several will say that a final isn't a blessing. I agree. In this case it was timed and I ended up falling asleep in the middle of it. Bad. Then I was able to wake up and finish within the allotted time. And actually make sense in my writing, I think. 

3: I didn't pass out! More than once this week I had that closing in or fading feeling that proceeds me passing out. Every time I maintained consciousness!! Wahoo! No falling and getting a concussion. No falling and getting a broken bone. No slipping on ice! No blacking out at work or in class. That is a great blessing for me! 

4: My friends and roommates have been there for me a ton this week. They don't know what it is like to have fibromyalgia, but they do their best to help me with what I'm going through. They'll walk slower with me so I don't get left behind. They're willing to give me rides to campus so I don't have to walk as far. They help me out a lot:) and I love them for it. 

Such a terrible week. But also a great one:) My Savior has been lookin out for me. And that means I'm a great person, even with bed head.

Flashback: Hospital

I was being a good friend this past week. Me and my best friend and her boyfriend went to the hospital to bring joy to a mutual friend who was just getting out of surgery. (Wow, that's a lot if friends.) We found the elevator and went to the sixth floor. As we stood around his bed and joked around with him and his parents my head became clouded. My ears and the back of my neck felt extremely hot. I felt myself slipping into unconsciousness. I was about to faint. I'm sure my face went pale and my eyes had a glazed look. 

I fought it! and was able to stay conscious. No fainting that day! It was sad how fast it came on and there weren't any warning signs that I was about to have this struggle for consciousness. I guess it's all in the joys of my life with Fibromyalgia. But it might also be that was the first time I had been in a hospital since my mission. 

The most traumatic three weeks of my mission revolved around a companion being sick and going to the hospital. Here's an excerpt from a letter home after those weeks: 

"Wednesday, two weeks ago, we called the doctor to set up an appointment for Sis. Xxxxxx to get her mouth checked out. She had a mouth sore that was giving her trouble. Thursday she started getting headaches, not feeling so good, and tired even with a full nights rest. But we kept working:) Friday we saw the doctor. Two infections in her mouth, got antibiotics, and went on our merry way. Saturday she could walk, but had to have assistance a little bit, and her headache worsened. We weren't able to do much work. Sunday more weak she couldn't stand on her own, and horrible headaches. We only went to church. Monday she pushed herself, hard to walk and do things on her own. we went shopping and ate out. By 6 in the evening she couldn't stand on her own. She was exhausted. Tuesday morning she was dependent on me to help her stand or walk. That was our first trip to the ER. They said she was dehydrated, needed fluids and was given a different antibiotic. The Zone Leaders came and gave her a blessing and sang to us. We were back home the same day. Wednesday she was the same, but by Wednesday night she couldn't sit up on her own. And everytime she stood she began to pass out. I fully supported as she made the trip to the bathroom and back to the bed. One of the members was really nice and brought over a walker for her to use so I didn't have to fully support her anymore. Thursday morning no improvement, in fact more weak-- she began passing out when she sat up only for a second or so. Not very long but enough to worry me, and her left side of her body was numb. Back to the ER.  The District Leader and the Zone Leaders joined us this time and gave her another blessing. The tentative diagnosis was Guillian-barre' Syndrome. She was admitted to the ICU for observation. That room was full of fear and anxiety. At 11:45pm I called the Wilkey's. Pres. Wilkey sang a song to s. Windley and the fear and anxiety left. We slept in peace and calm. 

"Friday morning we saw the doctors and nurses on parade. No one had much of anything intelligent to say, and then she was wisked away to get an MRI. We moved rooms to the 6th floor to continue treatment for Guillian-barre' Syndrome. We decided that it should be called Green jello disease. Our reasoning is that she's from Utah and everyone has jello there. But she's turning into green jello now, so weak her legs won't support her. The Zone Leaders brought us a fun package of toys and Ensigns to pass the time. Throughout Friday she continues to get weaker, and both legs are beginning to get numb now, not just her left side. Friday night her hands were numb and tingly. The Zone Leaders brought us Pizza for dinner and we had a fun time eating and laughing. She had a headache the entire time, and no medicine had been able to dull it at all. Saturday morning she awoke in pain. Extreme pain. So painful to watch her have the pain. She was gasping for breathe and couldn't move any part of her body without more pain. I rang the nurse and told her she was having trouble breathing. More pain medicine, a breathing test, nurses in and out, this lasted for about 5 hours. Between gasps of air, she asked me if she was going to die. I told her no-- she was too much of a fighter. She desperately asked for the Zone Leaders to come and help her. I called them up. Between tears I think they understood me clear enough to know that she wasn't doing well, and should come ASAP. They were there in an hour and comforted both of us. I got a priesthood blessing this time, and an added boost of strength. 

"Pres. and Sis. Wilkey started on their way up to Maine on Saturday afternoon. They were bringing Sis. Rykowski with them to help out with the area, and taking care of Sis. Windley. They arrived Saturday night, and were a very welcome sight after the hard morning. I was promptly sent to go shopping with sis. Rykowski and Pres. Wilkey to get good healthy food, then go to sleep in a bed instead of a hospital chair. Sis. Wilkey stayed the night with Sis. Windley. I was given strict orders to not use an alarm clock. I had a restless night and got a bit of my physical tired gone. On Sunday we could only attend the last hour of church because we slept in (as ordered). So we went to the Hospital to get the Sacrament when we were ready cause they were giving sis. Windley the sacrament there. It was a sweet meeting with the Elders administering it to us, and we all bore our testimonies. It was sweet. Nothing eventful that evening. Me and Sis. Rykowski went home to sleep and got up early to be at the hospital by 7:30am Monday. She was discharged from the Hospital and then we went home. 

"Still weak and exhausted no matter how much she rested. Numb and tingly all over now. Tuesday we found out she was going home. Wednesday we packed. Thursday we packed more, and picked up Sis. Windley's mom from the airport. Friday they flew home to Utah." 

So maybe the hospitals are just too tender to experience. It's been about a year and a half since that time, but still too soon to forget. 

Too Cold for Comfort

My body is sensitive to the cold. Originally I found this out while on my mission and attributed it to being in New England as a Texan. I went home to Texas and loved being in the warm weather all summer. I was thawed out:) Then moving to up to College I am extremely cold. And the weather is forecasted to be in the 60s. Now it's in the 40s and 50s. It is freezing!! And when it's freezing my joints are stiffening and I have more pain when I move. 

I'm trying new techniques to keep warm and downplay the stiffness and pain. Here's a few of the keepers:

1. An electric blanket. Best invention! I keep it on my bed and turn it on before I climb under the covers. It helps me relax and not freeze while I'm sleeping. 

2. Warm baths. I have begun making it a habit to soak for a bit on the hard days to help loosen up my body. I try to do this before sleeping if I'm pretty stiff or in the mornings if I know I will need a lot from my body that day. 

3. Hot pumpkin spice milk or hot apple cider. A really good tasty way to warm up my insides:) I usually have one of these when I get back home from classes. 

4. Wear a hat. I have begun styling a warm knitted hat around the house. It is so nice to keep me warm, and it's kinda funny lookin' wearing such a warm hat indoors. Thank goodness for my siblings who knitted my warm hat for me while I was on my mission... And I still use it:) 

I feel kind of silly with how cold I am. There is snow in the mountains but not in the ground. Oh well. I'm cold and I'm dealing with it:) haha it'll get interesting when it really starts snowing and gets super cold.  

Flashback: My Symptoms Began

Let me set the scene for you... My second to last transfer as a full-time missionary. Only a five week long transfer. I was training. We opened a new area that hadn't had missionaries living there in over 25 years. Nothing in the area book. Lots of getting to know the people. Mid February. Snow still on the ground. 

I was moody. Getting out of bed, which had not been hard my entire mission, was now near impossible. I would be awake in my mind but couldn't open my eyes or move my body. I couldn't speak. I thought I was dieing when that happened. It happened whenever I dropped off for a short nap or waking up for the morning. I was terrified of sleeping. But this was a catch 22, I couldn't stay awake! I was so fearful. 

But I was a missionary! I had to get up. I had to excersize. I had to study. I had to go out and teach people. But my body had shut down. I'm pretty sure I was a depressed because we ended up staying inside for more than any good missionary can stand. We missionaries like to be out of the apartment as much as possible among the children of God, serving them. 

I called my mission president's wife and told her what was going on. I went to a doctor, and was told to just get more rest, I had burnt myself out with all the missionary service I had done already. That seemed plausible, but the next three days I slept and relaxed with no improvement. In fact it was getting worse. I had blood work done. I was picture perfect healthy, but may be getting over having mono. Mono?! Really!? I'm a missionary. I shouldn't have the kissing virus! Impossible. That couldn't be it. Again I was told to rest up and that I'll be fine. 

It got worse. Within three weeks of beginning to go downhill, I was a complete wreck. I got priesthood blessings. All of them told me I'd be strengthened. What I really wanted was to be cured so I could back to missionary work again. 

In the fourth week I got a call from my mission president asking if I felt it was time to go home- a transfer earlier than scheduled. I cried. All I wanted was to be healthy and serve The Lord. I only had one more transfer!! Couldn't The Lord make me healthy enough for one more transfer?! Then I could be as sick as a dog, I wouldn't care. But the spiritual witness was extremely strong during that phone call, and I can't deny the answer. I was to finish my mission a transfer earlier than planned. I cried. 

My parents were notified. A week later I flew home. I had a very nice gentleman escort me around the airport in a wheelchair. Walking was just too much. But I couldn't let the first time my family see me in a year and a half be in a wheelchair, so I forced myself to walk the last leg if the terminal. That same determination pushed me through the hard days that followed. But that is for another post:) 

In a Fog

I'm melting again. I can feel it. My brain just isn't working to its full potential. I can't remember even the simplest things! I am frustrated at myself. Saddened because I can't interact on a normal social level. My mind can't keep up with the conversations of my friends. I feel isolated. Alone. I try to explain to my friends what I'm going through but I can't form my thoughts in a timely enough manner to help them understand what I'm dealing with. It's even hard to type this up in a coherent way. 

It's hard to tell people what I'm going through because fibromyalgia is very misunderstood. It's the invisible disease. I try to come up with excuses that people would understand, and not give me a hard time for. So I feel alone and misunderstood  sometimes. If you don't have it or understand it let me enlighten you. Here's some of the symptoms to help you understand what I'm facing:

Yesterday is when my mind melted again, well started to. I was on the phone with my mom. She asked me a question and I couldn't answer her. It wasn't that I didn't know the answer, but I couldn't process what she was asking. She just asked how my day had been, and what I had been up to. I almost started crying because I felt so inadequate! I couldn't answer a simple question. 

In class today I continued to see my mind function sub-par. I offered a comment in class and my professor asked me a follow up question to expand my thinking. I couldn't process it! I knew what she was asking me to do but I couldn't do it!! I'm sure my face turned bright red. I was embarrassed. I wanted to hide. Ugh. 

I looked up fibromyalgia on webmd. The online know it all said this mind melting is affectionately called "fibro fog." It's real. It's not in my head. I'm not dumb or stupid. Just in a fog. I just need to take a break when I'm melting or in this fog. And then I slowly make up the difference when I'm not in the fog. That's when I'm more social and that's when I get my homework done. 

I'm learning to act in Faith. I really have to trust in God when this is happening:) and He never fails me! Even though today is one of the rough days, I'll have more better days over all!