Saturday, August 16, 2014

Encouraging Others, Encourages Ourselves

This has probably been one of the most extremely long, drawn out, stressful, fatiguing, exhausting, emotional, sick feeling, disappointing, and discouraging weeks of my life. I don't know if you can get anymore negative sounding words in there, but there probably are more if I missed some, those can probably be added too

I had a GI appointment in Indy (2 hours each way) and my mom had to drive me because we didn't know how my eyes would be, how my energy would be, and the systemic staph infection I have had has just been kicking my butt and making my energy way less. We were gone for basically 6 hours for a like 30 minute appointment. We got home and I tried to order my supplies for my feeding tube and was told that I had a HUGE balance on my account and was told I would not be able to get my supplies until I paid off the supplies from last month and pre-paid for this month (keeping in mind this was my 10th month ordering for this comment and had never paid a penny because my insurance--Medicaid from October-April and Medicare and Medicaid since April--covered everything 100%. I asked why I randomly had this ridiculous  balance and the lady told me that Medicare was rejecting my supplies now and because Medicare is my primary, Medicaid wasn't paying anything on it anyway. So with the 6 hours travelling, with the infection, after talking to the doctor, and then coming home to find out about my supplies having a balance and not being able to be ordered. Monday night I had a very scary psychotic-like episode that was unexplained. I had a lack of coordination, agitation, slurred speech, confusion, change in speech rhythm and patterns, paranoia, hallucinations, irritability, lack of memory after a certain event, mood change, outbursts of anger, trouble speaking, and unusual behavior. It was definitely scary and lasted for 4-5 hours start to finish.

Tuesday, I didn't have quite the psychotic episode as the night before, but I was losing chunks of time...and I'm talking big chunks. Like 3-4 hours. It's almost like I had passed out for several hours without realizing it. Wednesday, I went to my saline infusion and my blood pressure was only 86/67 and I felt horrible. Thursday, my mom picked me up to take me to Indy again for pain management, just to get my pain med refill. That trip was about 8 hours and literally all I had to do was show up to get a prescription because they have to be hand written. But it took 2 hours to get there, he was several hours behind, and then the ride home...ugh. I also found out Thursday for some reason the financial aid office hasn't given me any financial aid for this coming up semester or the spring and after I've overcome so much to attempt to go back, if I can't because of a financial aid issue, I'm gonna lose it. Today, I had counseling. Then I had to drive to a town 45 minutes away to go to a new physical therapist because he supposedly had experience in working with those with mitochondrial disease. I make it there, they find out my prescription is expired, but let me go ahead with the evaluation anyway, and then I look up when I was called and the therapist was a therapist that I had already had in town that didn't know how to deal with mito.

So yes, I've been on the definitely discouraged side of the encouragement scale this week. There have been a lot of heavy blows...and even some that I can't mention on my blog...

But here is the thing. I love encouraging others and helping them cope with new chronic illness situations when they are in tough situations too! I love being there for them. People messaging me and asking my advice. Just being there for people and letting them vent, cry, complain. (Most of the time, I only enjoy it if they reciprocate the favor sometimes too.) Even when I am discouraged. I get more encouraged by helping other discouraged people become more encouraged.  It's like a symbiotic relationship.

I honestly believe one of the ways to stay encouraged, is to encourage other people. If you are always striving to help others be encouraged, then you are probably going to look at or hear some of the advice and encouragement you are giving to someone else and realize that "Hey, that nugget of encouragement applies to me and my situation as well," and by encouraging others, you are encouraging yourself at the same time. When you are down in the dumps, and just can't get out of the pit, take the time to encourage someone else...because seeing them react to the time that you took to give them a positive thought, a word of affirmation, or a simple smile across the room, and knowing that by whatever small act you just did to that person encouraged them and turned their day around and cheered them up, may be all it takes to get you out of the pit too. 

Living in the chronic illness world, you always get your fair share and exposure to discouragement. Whether it be through your own medical journey, interactions with your medical team, something you just can't get over. Or whether it be from 1 of the hundreds of people that you have formed friendships with in the support groups online and various places. At one point in time there is ALWAYS at least one person and usually a whole lot more than one person that is discouraged. This life is discouraging. There is nothing they can do to make us better, there are people constantly telling you that they know what you should do even though they can't pronounce or spell your disease name, people you've been talking to every day for months and months all the sudden don't post for a couple of days or send you messages for a couple of days and then you find out that's because they have passed away from the exact same thing you have and that one day someone will be waiting on you to message back and they will be finding out it's you that has passed away. There is lots of negativity and discouragement in the chronic illness world. 

But the best part about the chronic illness community is that no matter how bad a day you are having. No matter what is going on. No matter if you agree or disagree with this or that person's political, social, medical view points.The friends that you make in the chronic illness world are friends to the end. They will not judge you. And they will encourage you until they're blue in the face. Even if you are having the most discouraging week there has ever been in your life. Because that is what the chronic illness community does. We support each other, and we encourage each other, and we support each other, and build each other up...when all we feel is down. Because we know that even if we are having a bad week, we can help someone else have a good week with our words of encouragement. It just takes an empathetic "I'm sorry" or a smile. 

If you encourage someone else, you will begin to heal yourself. I so believe that. Encouragement is empowering and it doesn't just affect the person being encouraged. Encouraging words can touch so many people in one fell swoop. The person you are encouraging, yourself, their family and friends, and your family and friends because everyone's attitude will change. This world is so down trodden all the time with so much negativity. Let's just take some time out of our busy lifes where everything is always so critical and cold and take 1 minute to encourage someone who is having a bad day. I guarantee it will not only make the person you are encouraging feel better, but it will make you feel better as well...because our words of encouragement are a gift, and giving equals healing. Who will you encourage today? How do you plan to encourage that person? How do you think that will make you feel? I hope you find it as healing as I have. Because there never can be too much encouragement in the world. 

Saturday, August 9, 2014

Reflecting on my Roller coaster of a Year!

Technically, my birthday was yesterday, but people still haven't woken up for today yet, so this blog post can still count as being posted on my birthday, I think.

I always like to do a blog post on, or near my birthday to reflect on the past year and see what great insights I have had, and what big life decisions I've made and great successes, or great disappointments.

Basically, this whole year, I learned one really huge lesson with several small lessons kind of branched off from the one big lesson.

So what is the big lesson you ask? No matter how old you are, what race or ethnicity you are, how much money you have or don't have, how successful you or your parents are in life, your educational level, and on and on chronic illness and possible death from terminal chronic illness is not discriminatory. It can happen to anyone at any time. No one signs up for it. No one definitely signs up for the death sentence part of it. But that does not mean that it doesn't happen to some of the most innocent, cute children, teens, and young adults with their whole lives ahead of themselves. Also it stinks for adults too, but it just seems a little less fair to me when it's the kiddos. Chronic illness sucks!

We have to realize that no matter how much we think that we still have 60+ years here on this Earth, the truth is that none of us really know. Even if we don't have chronic illnesses that may be terminal, we could still die at an early age due to a car accident or something like that. It doesn't just have to be from a chronic illness. 

However, once we found out what kinds of mitochondrial disease I had, we did get pretty nervous about me living a really long term average life span. Once you are given a diagnosis like that, you just have to start doing things that you want to do, because you never know how much more time you are going to have. Well, no one does really. When we know we may not have that many more birthdays, we start living life to the fullest, and stop making plans to please others, but make plans to please ourselves.

Eventually, when you get older and more mature, and the more life experiences you have had, especially if those life experiences are in dealing with chronic health conditions and having watched from a very young age very young friends pass away.  We have to remember to start living each day to the fullest....even if that looks completely different for each of us. We have to live life now. We can't wait...because if we wait too long, it might be too long. We can't give up on our dreams. If we have things we want to do, the time we need to do them is now. 

Even though it may seem like if you look at your life day by day nothing really seems to change. Everything moves so slow. Changes happen, but they just kind of mutate over time, slowly, forming new parts of you. Not all at once, hitting you like a brick wall (although, at some points this year, that is exactly how I felt.) But my point is at my last birthday, I never even dreamed of getting a permanent feeding tube a month and a half later, having to drop out of my masters program  for a year to be on bedrest, getting diagnosed with mitochondrial disease which is most likely going to shorten my lifespan significantly, would actually get work done on my thesis, and decide to go back to work...but all that (and more happened). 

Change happens,  it's how you respond to that change that makes you who you are. I know that I have lost a lot this year. But I have gained a lot too. Through both my feeding tube groups and mito groups and some other groups as well, I have met some of my best, most precious friends that I get to love on and encourage. Even though we are all there for sucky reasons. Good things can come out of bad circumstances. Trust me on this. I am an expert!!

We need to stop victimizing ourselves and playing the woe is me card. Another thing I learned this year is that no one likes someone who complains to someone all the time. Especially me, fi you can't find anything happy to say in your conversation, please don't talk to me. There is always something good in life. Your life cannot be all miserable. There is just no frigging way possible. So if you are only gonna message me when you want to can bet I won't be answering your messages, because for my healing, I need positivity and perseverance. Not negative people dragging me down all the time.

The last thing I learned is to always live like you're dying. Live like this will be the your last day on Earth. And make sure that you never stop trying, never give up, fight the good fight, don't give up on your battle. Because all we really want for our birthdays, really is another birthday, right? Overall, I think I learned some overall good lessons this past year. At least I have a lot to reflect on for this upcoming year. I wonder what I will learn next year?

Sunday, August 3, 2014

Wards Are Power!

I'm participating in a encouraging card exchange group on Facebook right now called #fmfpartysnailmail. You should Google it, or search for it on Facebook because it is a very interesting, and fun, and challenging group/activity/whatever you wanna call it and I highly recommend it if she offers the program again. The person who operates this project, group page, etc. is organizing a link up blog where you can link one of your posts to that person's blog of that post to get more readership, and plus you get to read other cool people's blogs about other people's journeys as well. The link-up going on right now is to challenging you to write anything you want to about the written word and then link it up to this awesome blog It Just Takes One

Personally, for me, the first thing that pops into my head when I see the words "written word" paired together, my brain always goes straight to the Bible, which is also known to some as the written word of God. And my brain fills up with Bible verses like the following:
"The grass withers, the flowers fade, but the Word of tour God will stand forever"
Isaiah 40:8, ESV
"For the Word of God is living and active, sharper than any two-edged sword, piercing to the division of soul and of spirit, of joints and of marrow, and discerning the thoughts and the intentions of the heart."
Hebrews 4:12, ESV
Then I kind of thought about my blog. Like that is a form of written word. I am writing all these words in hopes that someone will read them, someone will feel from them, someone will understand from them, someone will feel better about themselves because of the words that I have written. I believe it is my mission to take my words and help people understand things in a better way. Heck, I want someone to read my blog posts and stories and be able to identify with me and tell me I am not alone. We all need to know that every once in a while. And I use written words to do that. My blog is my purest and simplest and most awesome form of my written words.

But then I thought about the literal meaning of "written words' as words, that are handwritten. And that struck a chord with me. I love, love, love getting cards in the mail, cards when I'm in the hospital, cards on a holiday, cards on a Tuesday, I love getting cards! And I try to stay caught up and send other people cards too. 

There is just something so different, more personal, more intimate, more of a feeling like the person that wrote you the card is sitting on the sofa right next to you if you get a handwritten card. For some reason, seeing each different person's own way of writing, the curves they make, the way each letter is formed and spaced, the curls and curves of the letters, it tells of each person's personality so well I believe. 

Especially, in the society that we live in now. We live in a society where our phones, laptops, Ipads, and everything else are ALWAYS logged into Facebook, Twitter, Instagram, Facebook Messenger, Pinterest, LinkedIn, and on and on. Or we can text 24 hours a day, call people, leave voicemails, Skype, and FaceTime. We are a digital society. We are a fast society. We are a right now society. We do not slow down at all. Even if we ask somebody how they are doing. We don't really care for the true answer, we just wait long enough for the person we asked to say "ok" or "good" before we scurry away. We send people cute pictures or half caring questions or ((hugs)) or little emoticon hearts, or happy faces, or sad faces, or conflicted faces to let you know that we at least read your status update, but we don't actually want to give you any real encouragement, because that would take time, so here's this red heart, smiley face, and some ((hugs)) which will of course make it all better. 

This is not communicating, people. This is not how you build relationships. Keep relationships. Let people know you truly care. I am a firm believer that sending a hand written card than any one line on a person's wall that says "just stopping by to check in", or a private message, or a card in my email inbox to look at that is animated. Not that those are not wonderful and appreciated things, but, I love to get cards too. :)

I love to display the cards in my room, I have 2 special places I display cards right now: 

This is my healing corner of my bed bookshelf space and I rotate in and out, cards and notes that I've gotten from people when I was in the hospital, or when I had a procedure, or when I was just not feeling good at home. 

This is on the wall of the long hallway that goes from my door into my bedroom. It's a card rack thing. I keep cards on it. Some stay forever. Some rotate in and out. It depends what their significance is. It depends what the emotion is behind it. But I can tell you right now, that card on orange (turning drab off orange/brown color) that says "Get well soon, Ms. Fulsom" and has a big heart on the inside of it, that card is staying visible to me for the rest of my life. Because I taught that 13 year old boy with moderate-severe autism that can barely even talk, how to write, and he made me a card when I was in the hospital one time. How sweet is that? I love and miss that kid, even though he was a handful.

Another thing, you should know about me, and you can probably kind of sort of already tell. I keep every card that is ever given me (for about the past 3-5 years or so, that's the time of my life where I truly started learning the value of someone taking the time and picking out the perfect card for you, writing a little something in it and mailing it to you. It's not that easy these days, takes way longer than tagging you in a post of an inspirational quote on Facebook, but much more lovely. 

And when I say I keep every card, let me just show you what I mean. I keep every card! 

These cards birth announcements, congratulations cards, thank you cards, cards for random holidays that you usually wouldn't get cards for like thanksgiving, new years, Easter and things like that, and some handmade and drawn cards made with love that are just encouraging. 

These cards are handmade cards from the girls of the youth group that I helped chaperon trips for at my church when I was in the hospital for the 13 day time trying really hard not to die because of my potassium, get better/don't stay sick cards from people, thinking of you/just a little note cards, Christmas cards, and birthday cards.

So as you can see, I am a woman of my word. I love receiving handwritten cards. And I will save them. And when I get them out to right blog posts like this one, I will open each one up and read the messages and have a flood of emotions fall over me because I will feel like the people that wrote these cards to me are sitting right next to me because of their words, feelings and emotions being conveyed through the card and then I realize that they are no where near me. And I get sad. 

There is only one logical solution to this, it is to: 

duh, easy as pie. Just take out a pen and some pretty little stationary paper and every time you wanna comment on somebodies status right it out on a piece of paper and send them a PM for their mailing address and send them a handwritten letter, or a card, or something, that shows that you cared enough to stop your would for 5 minutes to think of them enough to send them a handwritten card. They will be thrilled, I guarantee it. I mean who seriously wants to go out to their mailbox and only find junk mail and bills. Why don't you make sure at least one of your friends a week gets a handwritten card to break up the monotony of their mailbox boredom?

Or you could do like I did and join the #fmfpartysnailmail if she does it again, or just send letters to people when you can tell they are feeling down, or if you wanna step way out of the box do what I do every year on my birthday. Every year, I write the number of handwritten cards to the number of  friends of the age I am turning that year. Friends who have supported me through the year, who have helped make me live a more easy life, who have helped me make it to this birthday alive and happy. So this year I am sending out 29 handwritten cards. So this week I am sending out 30 handwritten cards, last week I sent out 4 handwritten cards. There is just something about handwriting a card to someone that makes me feel like I made you feel better about yourself just for a minute. And that makes me feel better too. 

So I've got my cards out, and I'm ready to make your week special, maybe, if you get a card from me, for sure!!! If there is one thing I hope you have learned, it is that words are powerful. They can build you up or tear you down. They can make you happy or sad. Words can do a lot of things. We should use these powerful words to empower our friends. Come on everybody pick up a card and join in some word writing, too!