A Picture is Worth a Thousand Words

Still continuing on the theme of Invisible Illness Awareness Week, I saw this brilliant blog post over on Life as a Zebra and I'm totally going to copy it just a little bit (and by a little bit I basically mean I'm going to steal her whole idea and I hope she doesn't mind. But I think awareness is awareness and this is brilliant, and the more awareness there is the better. And I'm at least putting my own pictures in, but it's her idea, and I'm giving her credit.)

You always hear those of us with Invisible Illnesses say that you can't see our illnesses and that you will never truly be able to understand how horrible we feel because you just can't ever get how we feel inside our bodies because on the outside of our bodies we look completely normal. So I'm going to share a couple of pictures with you of how I looked on the outside and caption them with how I felt on the inside.  I'm in no way "seeking attention" by doing this, asking for sympathy, eliciting emotion, or anything like that. I'm just trying to let you know how we look on the outside when we feel as bad as we do on the inside. I hope this gives you some glimpse into the life of someone with an invisible illness.

This was right when I was first getting sick. It was Christmas 2005. Everyone was commenting on how great I looked because I was so thin and I always had so much color in my cheeks. No one knew the color was from flushing from standing up too long and the skinniness was from severe weight loss due to going to the bathroom sometimes over 20 times a day from colitis that was undiagnosed at this point. I went to this conference and at this point knew I was extremely tired all the time and couldn't tolerate a lot of foods, but they told me I had mono and that's all I thought was wrong with me.  In this picture we had just finished staying up past midnight talking, just like any normal college kid at a winter Christian week long conference, right?

This was right after I had landed in Mississippi for a class trip for my Mississippi Delta Blues class. I was so excited for this trip. Unfortunately the plane ride made me violently ill (which we would have known would have happened if we knew I had dysautonomia, in fact right after this picture was taken I vomited from the pressure change) and my colitis was acting up (which we also didn't know I had yet), so I spent most of the trip in my authentic blues cabin in a cotton field in the middle of the crossroads with my favorite music professor ever rubbing my back and feeding my prophylactic medications while everyone else had the trip of a lifetime.

This was at my favorite job ever, working as a camp counselor at an camp for people with Autism Spectrum Disorders. A lot of times I really hoped that my campers would need to take a break in the sensory room, just so I could take a break in the sensory room because my senses were getting over stimulated too and I needed to lay down on the big air pillow and take a break before I passed out. This was definitely one of those times. See how red my face was. Definitely a sign that I was about to pass out. You can also see I'm getting pretty thin. In about 3 months from this picture I would end up at my smallest of 99 pounds.

Here's me at Christmas with my family. We are up to 2009 now. So this is my first Christmas break as a full time teacher and full time Masters student. My first Christmas break as a diagnosed severe Ulcerative colitis patient and first Christmas dinner as a diagnosed Celiac. Notice the considerable weight difference in some of the pictures. At this point I probably weighed around 105 pounds. This is not the lightest I got, that would be 2 years later, when I almost died from the colitis. But look how happy and normal I look, don't look sick do I?

This is when I went to the Bahamas for my graduation present cruise. I don't look sick here either. I did spend the entire cruise running place to place trying to find a bathroom because I was flaring because I didn't know I had colitis at this point yet. You can also see my hypermobility from my EDS in my legs some, if you know what you're looking for, I sure didn't, I just knew it hurt to walk a long way, but I thought it did for everyone. I didn't know that not everyone's long way was like 1/2 a mile though. 

This was taken on one of my BFF and my road trips to NYC. We walked around the city from one side to the other. I was in horrible miserable pain from fibromyalgia. Almost in tears, but I wanted to see the city. This is also before (TMI ALERT) I was on depo provera for my endometriosis and PCOS and I had been on my period for over 3 months straight and I wanted to kill someone for ruining my 25th birthday/NYC/BFF extravaganza!!! Also, when you're on your period your colitis flares, just because it's fun. So that was going on too. Plus, of course I felt like I was going to pass out. But I got this great picture. And we had a pretty good vacation anyway!!! 

This picture was taken last summer, notice the weight change!! That's from medications! My dysautonomia and fibromyalgia pain had started progressing pretty quickly so my BFF and I decided to have a last hoorah vacation and went to Portland, Maine. We went on a whale watch, which wasn't that intelligent for someone with nausea, motion issues, pain issues, etc. The benches were rock hard. The waves were hard. It was rough, but we saw 3 whales!!!! 

This is today, me getting my IV that I get every week to make sure that I have enough blood volume to make my blood pressure stay a little bit above 100 at all times (and sometimes it doesn't even work for the whole week, if I'm standing up for a LONG time at say like...clinicals). I get 2 liters of Saline, every Thursday, it takes 4 hours out of my week. I study or do Facebook, or do this (blog), sometimes I call it Thirsty Thursday, sometimes I call it Spa day. Either way, I need it to survive. But on the other side of this arm, I look like this: 

at 8:00 in the morning at the infusion center (having to wake up at 6:45 to get there) after going to sleep finally at around 3:30 in the morning because of being in such bad pain I couldn't sleep which I so endearingly call painsomnia. Also, on the inside of this body I'm super nauseous, have a headache on the verge of a migraine, don't want to stand up to go to the bathroom because I'm dizzy because all my fluids aren't in me yet. Also, my pain is at a super intense level despite a massage and a chiropractic adjustment yesterday because it feels as if both my wrists, elbows, knees, ankles, all my toes, and my lower back and hips are out of place. Most of my muscles hurt too, undoubtedly from the massage, because it's the day after. But I have no fever, or signs of infection according to my nurse, and look perfectly healthy, right? 

And these pictures my friends are why we have Invisible Illness Awareness Week! Because my Invisible Illness, is also my Visible Hope! Who said a picture couldn't be worth a thousand words after all?

A Little Bit of Coffee and A Whole Lot of Jesus

It is a well known fact that I spend a great deal of time re-setting my brain (read procrastinating) on Facebook and Pinterest and other social media outlets because grad school is hard for normal people and for someone with 14323942 medical diagnoses it's REALLY hard, especially when most of those make reading and retaining the information you read difficult. I don't know if you've been to grad school. But it's all about reading and retaining the information you read. Anyway, I digress. One day, when I was on Pinterest, re-setting my brain (truly it was the summer so it didn't matter) I found this jewel of a quote and about said out loud in my bedroom well ain't that the truth.

I immediately decided that this sentence is what was going to get me through the next year of my life, cause I graduate next August y'all!!!! I've got a canvas ready to paint the saying on it and hang it on my wall.  I've got it written every week in my planner. It's on a note card in my car. Seriously. 

Now, I don't know about y'all, but when I adopt a mantra I want to know where it comes from so I googled the quote, someone had to have come up with this brilliant statement, right? Katie Davis did. She is brilliant for more than just her mutual love of coffee and Jesus. She wrote the book entitled "Kisses from Katie" and it's amazing. I read the whole thing in about 2 days and was so enthralled the whole time I wrote a book report thing of it here and how her experience as a missionary in Africa compares to my experience as a chronic illness advocate here in America. It was such an amazing book, let's just leave it at that, now back to my post. 

Why did I immediately fall in love with this quote as soon as I saw this and decide I was going to post it all over my life and do everything short of tattoo it on my hand to remind me? Well, number one, I'm a coffeeholic. Every time I get coffee (which is at least once a day) my life gets just a little better and a little more stress free. Plus, I've been a barista at least 4 times throughout my life. I'm pretty sure if they hooked up coffee in my saline infusions instead of the saline I would be ok with it, but they don't really allow that. 

Second, I really love Jesus. A lot. We're best friends ya know. Every time I get mad or overwhelmed or feel like I can't go on, something happens and it's like oh, hey, yeah, that's God there reminding me that I'm not in this alone. It's really, really important to stay in the Word and stay in tune with God when you are chronically ill because the littlest things can throw your whole viewpoint off guard and mess up your whole day and doubting your whole life or your whole reason for existence. And if you thought being in the Word was important being chronically ill, being in constant conversation with Jesus is SO important being a chronically ill grad student. You are constantly challenged not only physically, but mentally as well and your body is pushed to the max. Hopefully in the end it will be worth it. 

Looking for the signs of God around you is important and fun to do too! The small things that you don't even think about are the biggest signs from God to me. I always have the Christian radio station playing in my car and I'll be having this thought go through my head and the next thing I know a song will come on to counteract the thoughts that I'm having at that moment. Sometimes something will happen that will irritate you while it's happening but then you will realize it was to protect you, or to give you a better opportunity down the line. Earlier this week, I was sitting outside in a rush waiting on my dog to do what dogs are supposed to do outside, frustrated, trying to be on time to one of my many doctor's appointments exhausted and fuming inside. Then I looked down. And saw that the shadow had formed the shape of a butterfly from one of the plants in our garden. 

The butterfly is the symbol that is used to represent fibromyalgia and I was in a particularly large amount of pain at that moment so it reminded me of my chronic pain friends. But, the butterfly is also a symbol that is constantly used in the Bible for new life. For instance in 2 Corinthians 5:17 it says "Therefore, if anyone is in Christ, the new creation is come. The old has gone, the new is here." So when I saw the butterfly it reminded me that in Christ I will have new life (and a new body! Praise God!)

I will be the first to admit that when the world gets you down, it's so easy to put God off on a little shelf and forget all about Him and keep whining and complaining and wondering just how you are going to get through this latest overwhelming time in your life. And let me tell you what, did I have a break down this week. If you are Facebook friends with me you may have witnessed it, heck you may have helped pull me out of the pit. Yes, the pit. I was about 20 seconds away from quitting grad school 14.5 weeks from finishing all my classes and one internship away from graduating because I was overwhelmed and sick and flaring and in pain and just had no idea how I could do it anymore and if it was worth what I was doing to my body to get me to this point. And it took earthly people on my Facebook newsfeed to remind me that I am not a quitter and that I am so close to accomplishing my dream. Where was God in all this? Well, He was literally where He always is. But in my head, He was up on a shelf somewhere, He certainly wasn't being asked by me what to do in this situation, but all of Facebook knew (and yes I know God knew too, but I wasn't letting Him in that I knew that He knew). It's so hard to forget that He helps us when we are overwhelmed and He will get us through any situation no matter what it is. After all the Bible also says, "From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I." Psalm 61:2 NIV I like how the NIV version says "as my heart grows faint" as opposed to "when my heart is overwhelmed" like the KJV because so much of my life is my heart growing faint and it's highly disturbing and scary and so this is not only truth but symbolic as well. 

Anyway, this was a really long post to make the point that as long as I have at least one cup of coffee a day (an iced decaf skinny vivace turtle mocha with no whip from Java Haute preferably please) and rely a whole lot of Jesus throughout my day and life it will all be ok. And if it's not ok, it's not the end. So I've just gotta remember every day when I get up or when something bad happens or I'm feeling extra stressed out and overwhelmed "All I need today is a little bit of coffee and a whole lot of Jesus," and get in my car with my dog, forget about school for 30 minutes, listen to some Christian radio, say a prayer or 2, and head off to Java Haute, and it will all be ok. :)

30 Things You May Not Know About My Invisible Illnesses...Again

Well, it's that time of year again. One of my favorite time's of year in fact. The time of year where Invisible Illness Awareness Week is ramping up and getting ready to go and spread some awareness all over the place!!!

Those of us with invisible illnesses get a little excited about this.

Lisa Copen, founder of Rest Ministries and National Chronic Invisible Illness Awareness Week started this Meme a couple of years ago and I always think it's interesting to fill out the meme every year to see how my answer's have changed. This will be my 3rd year filling out the meme, but only 2nd year prepping for Invisible Illness Awareness Week. The first year I found it after the week.

So without further ado. Here are my answers to the 30 things you may not know about my Invisible Illness(es) 2013 edition.

1. The illness I live with is: Celiac, Colitis, Fibromyalgia, Dysautonomia, PCOS, Endometriosis, and EDS III

2. I was diagnosed with it in the year: 2009, 2009, 2012, 2012, 2009, 2010, and 2013

3. But I had symptoms since: Seems like forever, but small onset when I was 16, major onset at Christmas of 2005 for the Dysautonomia/Fibro stuff, never recovered after that. This is where we've pinpointed it all back to just recently. 

4. The biggest adjustment I've had to make is: Not making plans. Or at least being ok with breaking them if I have to. This was such a hard thing to get used to since I used to be such a social person. It really almost kills me having to lay in bed all the time. I am so, so, so THANKFUL to GOD for all the wonderful friends that I've developed inside the computer in my support groups, and the FEW great friends that have stayed by my side in real life and put up with the constant cancellations and re-schedules. You guys are God-sends, you have no idea. 

5. Most people assume: I am healthy because I look healthy. No one can see my illness. People even accuse me of abusing my handicapped parking pass or using my wheelchair for sympathy since I can get it out of my car myself and put it together myself and then get in it and wheel off somewhere. Because yes, I did get an almost $5,000 dollar wheelchair because my doctor thought that I just needed some sympathy and some extra people to stare at me every once in a while. 

6. The hardest part about mornings are: Standing up. Besides the fact that I have a postural disorder to begin with so standing isn't in my favor ever, a lot of my meds have long half-lives and are highly dependent on sleep for some reason. And I don't get a lot of that due to insomnia. So the less sleep I get, the more impaired I feel when I get up and it takes me a while to get my bearings. But when I have to leave for class within 30 minutes of the alarm going off...I don't really have a choice, now do I....

7. My favorite medical TV show is: all of them? I think this answer stays pretty constant. Definitely Grey's Anatomy, House (still waiting on mine), I'm sure there are more...can't think of them right now though....haha

8. A gadget I couldn't live without is: Of course, I really like my computer, I phone, and I Pad for helping me stay connected and apps to keep track of things. But I really am fond with my full body massage mat, it helps me stay out of pain. :)

9. The hardest part about nights are: Falling asleep and staying asleep, without pain. Period, end of story.

10. Each day I take 21 pills & vitamins. (No comments, please) This is way far down too. And as of the posting of this I have been off of my narcotics for exactly 21 days!!! I'm very proud of myself on this one! I gave them up on my birthday! :) 

11. Regarding alternative treatments I: do them all! I go to chiropractic at least once a week, more if I'm having a bad week. Massage one week, acupuncture the week I'm not at massage. I try to eat anti-inflammatory. I go to a counselor to work out my feelings. I love alternative therapies. But do believe they need to be balanced with meds. I do not believe there can be anyone healed with all natural or all medical. 

12. If I had to choose between an invisible illness or visible I would choose: To have a visible invisible illness, just like I do. I have the best of both worlds. Just enough to when I want to be well, I can be. When I need to be sick, I can be. I can see both sides of the fence, and not be a weirdo and judgmental to anyone I meet. I'm very happy where I am. If I have to be anywhere, that is. 

13. Regarding working and career: I miss my job as a special ed teacher very much. I am almost (please Dear God) finished with my Masters in Dietetics degree, but will never be able to work a full time job of any kind. I will likely be on disability for the rest of my life. This makes me really sad and frustrated. I'm 28 years old and have grieved a long time over this fact. Especially when people say stupid things to me like, "So you're just gonna mooch off the government for the rest of you're life?" No, I plan to do good things for the rest of my life. I plan to do something with my dietetics degree. I plan to do good with it in fact. From bed, through my computer. I hope to help those with chronic illnesses with my dietetics degree from bed through my computer, in fact. One day. Hopefully soon. 

14. People would be surprised to know: The 4 hours that I go to school each day = me not leaving my bed for the rest of the day, and part of the next day, no lie. That's why this M/W/F class schedule is so imperative to me. 

15. The hardest thing to accept about my new reality has been: that I have to pace myself, take breaks, and go slow. Going from a Type A, long distance runner to someone who spends most of her life in bed has not been easy...but it's necessary. If I stray from taking breaks. I pay. I have to do it. It's worth it for the good times! 

16. Something I never thought I could do with my illness that I did was: go back to school and get my Masters degree, let alone in a competitive program where I would have clinicals in a hospital setting and write a thesis. But I'm doing it, one day at a time. And I plan on graduating in August of 2014!!! So excited!!! 

17. The commercials about my illness: Make me cringe! One example is Lyrica for me. The commercials always show the person saying they "feel all better because of Lyrica" but they always have their husband in the frame doing everything for them and they are sitting on soft billowing lawn furniture in a home improvement store or some such thing. Then at the end of the commercial there is light flowing through the hair to make it look all positive and they list all the side effects that you may have, which are side effects you already have from the fibromyalgia, or the other 4000 disorders you already have. I don't really enjoy seeing commercials about my illness or the drugs I'm on, or other drugs that I could be on. Because I really don't wanna know what the side effects that I may have are. And I don't really want to be promised to be skipping off into the sunset holding hands with some small child, because that isn't going to happen by taking a pill, obviously. 

18. Something I really miss doing since I was diagnosed is: Spontaneity. I really miss being able to wake up and being able to say I wanna go kayaking, hiking, mountain biking, and do it. I really miss living in Salisbury which is 2 hours to the beach or the mountains and being able to wake up on Saturday after a long week of teaching and being like do I wanna go to the beach or the mountains, making up my mind, and going. Easy Peasy. 

19. It was really hard to have to give up: Running, obviously. Well, not obviously, if you've never read my blog. But running. It makes me cry. A lot. I want to run again. One day. For a long time. Just one day. 

20. A new hobby I have taken up since my diagnosis is: Well, this right here would be it. Blogging. I love blogging now. I thought I would hate it. Read my first blog, that will prove it. But now, it's my therapy, my outlet, my support, my awareness tool. It's cathartic. I think blogging is a good hobby if you are sick. :)

21. If I could have one day of feeling normal again I would: Let's see. One day. I would wake up at 6 in the morning. Run about 28 miles. That's more than a marathon. So maybe just a marathon. I would then go on a hike, go to the beach, swim in the ocean. Do some shopping. Eat some food with gluten in it, lots and lots of gluten (I for the life of me cannot figure out why people give that stuff up for fun!) I would hang out with my friends in all these things and not have to worry about if it was too hot, too cold, what was on the menu, how long we were standing up, etc. I would go to a theme park and ride all the upside down roller coasters because I could! I would then go camping over the night time. Because I miss camping a lot and it's just not suitable for those with many of my conditions. No bathroom, no temperature control, the ground is hard and painful, etc. So I would go camping, under the stars, no tent, under the stars, and thank God for giving me a normal day! (I'm also assuming in this scenario I'm rich, have a time travel machine to get me place to place fast and will suffer no ill side effects the next day)

22. My illness has taught me: To appreciate the little things in life, life is beautiful, God knows what He is doing, I am awesome and strong. I am not my illness!

23. Want to know a secret? One thing people say that gets under my skin is: "Are you better yet?"

24. But I love it when people: Comment on how strong I am or remind me how far I have come through adversity. 

25. My favorite motto, scripture, quote that gets me through tough times is: 
        I've got 2:
            * "I praise you because I am fearfully and wonderfully made." Psalm 139:14
            * "...but those who hope in the Lord will renew their strength. They will soar on wings like eagles;                    they will run and not grow weary; they will walk and not grow faint." Isaiah 40:31

26. When someone is diagnosed I’d like to tell them: Learn to be an advocate for yourself, never settle for an answer that you don't want to be the final answer, never stay with a doctor that you don't feel is serving you well (you can fire doctors, just like they can fire you), get the treatment and respect you deserve, and fight like H**L because us spoonies don't go down without a fight! 

27. Something that has surprised me about living with an illness is: It's just like living without an illness. I'm just like you. You're just like me. Everyone's got circumstances. Everyone's got something. Everybody's broken. This is my thing. You just have to learn to adapt. 

28. The nicest thing someone did for me when I wasn't feeling well was: Believed me. Enough said.

29. I’m involved with Invisible Illness Week because: I want Invisible illnesses to become not invisible illnesses from an awareness standpoint. I want there to be no taboo. I want to not feel insecure about myself and feel like I have to fight everywhere I go to get rights just to do things like get equal access at school and in the parking lot. 

30. The fact that you read this list makes me feel: Supported and loved. 

And that's it. There you have it. 30 things you may not have known about my invisible illnesses, 2013 edition.

Oh, and by the way, Lisa was also able to write an article for the Huffington Post to spur interest in Invisible Illness Awareness Week as well. And your's truly was quoted in it (along with another one of my friends, and some other pretty awesome chronically ill people). :) So you should go to this link and read it as well to see about why the right words matter when your friends are ill.