Zebra University

Having chronic, invisible illnesses is tough, really tough. Being in a competitive dietetics program in your last semester before internship is really tough. Writing a thesis and doing your own research study for that thesis is really tough.

Having chronic, invisible illnesses while being in a competitive dietetics program in your last semester before internship and doing your thesis at the SAME time, I've decided is just plain STUPID and really tough. And it looks something like this just happened. 

****Disclaimer: I'm going to write this blog piece in the most respectful and polite way possible. Nothing I am saying in this particular post is against my institution, my clinical placement site, or any person. I absolutely love my professors, my program, and where I am placed for clinicals right now. This posting is about how I feel physically, not how I am treated. Period. Do not read anything else into it.****

I was really excited when I got my schedule for this semester, I told everyone it was like the Heavens opened up. After last semester of having 8-4:30 Monday-Friday of classes or clinicals I was so excited of this semesters schedule. Classes are Monday, Wednesday, Friday 8-12. Clinicals are Tuesday 12-4. That's it. How could it be more perfect. Look at all that free time!!! Hallelujah!!! What was I going to do with all that free time? I was actually not going to have to miss class for doctor's appointments anymore, I was so excited. I found out my schedule last spring. That was before I progressed so much. 

Now let me tell you what. I have no free time. Almost every second of that "free time" is filled with a doctors appointment, treatment, therapy of some kind. And if it's not it's filled with some kind of intense homework assignment or studying. Because what they don't tell you when they give you that schedule is that our classes don't fill up our time anymore because the 2 classes we have this semester are SOOOO hard and time consuming outside of class they can't give us anymore classes because they are so hard (and I guess I should have guessed that since they are 5 credit hours each). 

Anyway to give you an idea, I'll show you a typical 2 week schedule for me (because I alternate alternative treatments every other week of what my schedule looks like by showing you my schedule for this week and next week). 

This week I had: class on Monday (our 8 am was a field trip though, then rushed to class on campus), then an Applied Health Sciences department picnic (in the sun on a 100 degree day across campus and I didn't use my wheelchair), then I had counseling, then I came home and went to bed. Tuesday I had clinicals from 12-4 and that was it (but it was plenty since it's a lot of standing and I decided I was 'real people' sick on this day and for the rest of the week too). Wednesday I had class til noon, then I went home and crashed until 2:30, had to run back up to school to drop off a worksheet for homework I forgot, then ran back to the other side of town and went to the chiropractor and got a 30 minute massage and then went to a new C-group (Bible study) which I loved. Thursday I had my infusion at 8, went to lunch, and didn't do much else (besides fight on the phone with doctors offices all day) because I was so worn out, including didn't study for my test today which was a really bad decision, but I just couldn't because my body just couldn't do it. Today (Friday) I had a test at 8 am, class at 10, then a Barium swallow study/speech eval at 1, then I came home and slept for 4 hours and went to my cousin's bday party, and now I'm back in bed again.

Next week I have: class on Monday til 12, counseling at 1, and acupuncture at 3. Tuesday I have clinicals from 12-4. Wednesday I have class until 12, then I have to go follow the certified diabetes educator for 4 hours at the professional office building. Then Thursday I have my infusion in the afternoon (maybe I can sleep in?). Then Friday I have class until 12, then an appointment with my rheumatologist at 1, my general physician at 3, and a massage at 4. 

All of this is in between having a to-do list just this weekend of:

• Take chapter 4/CDC module 3 test
• Take chapter 8 Medical Nutrition therapy test
• Take chapter 9 medical nutrition therapy test
• read chapter 5 for food service systems
• read chapter 13 for medical nutrition therapy
• read chapter 5 for epidemiology
• do Monday homework for medical nutrition therapy
• clinical write up
• epidemiology paper outline
• work on food systems paper
• work on file box project

Oh yeah, and then I've got to worry about ya know the being sick part. The fact that I'm in unrelenting pain all the time. I have a consistent headache all the time. I can't stand up very long without feeling like I'm going to pass out (but I have to for clinicals and have to walk around which makes me subluxate and disloacte from my EDS). I have blood pooling which causes edema and swelling. My neuropathy is getting worse and so everything is tingly and numb all the time and my feet are super, super bad. The joint pain (which I think this is the 3rd time I've mentioned in some way) is the worst it's been by far this semester. I'm nauseous all the time to the point that it's debilitating. I choke all the time, on food, on my own saliva, sometimes on the air. Sometimes I randomly quit breathing and we don't know why? I can't stop coughing. My eyes are always in pain too and hard to focus. My colitis is flaring again which just really stinks because it's been in remission for so long. The blood pressure and heart rate are going back and forth so much it's not even funny and my glucose level are all over the place. Oh and let's not forget that every time I eat I feel the need to fall asleep within 30 minutes and can't stop it no matter what I try. And eating is pretty important so I have to do it so I just have to fall asleep in class, sorry, can't help it. And now I've gotten to the point where I'm falling asleep pretty much all the time. Because let's face it put all these symptoms together with all this school business and it's exhausting and you just can't do it. But for some reason I am. 

I'm pretty sure I'm failing at it too. No matter how good I look on the outside. No matter how many times I know the answer in class and can raise my hand (I probably only know the answer because I've had that test or procedure done to me, not because I know the theory, let's face it). No matter how much you think I have it together, I don't. Today, for instance, I drove zombie like to school and took 1.5 hours to take a test that was 10 pages long and by the time I got to page 5 I couldn't even read the questions anymore, let alone answer the questions accurately. I was in so much pain it was no even funny. I don't know what I got. But I bet it's not good. On one of the questions I literally wrote, "I know the answer, but dysautonomia won't let me tell you right now," because this teacher would prefer a humorous (though it's not humorous to me or my grade) wrong answer than nothing written on the page. I can't imagine why after the night before last only getting 3.5 hours of sleep from pain. Being super nauseous all day yesterday, dealing with doctor drama from 2 different offices, feeling like crap and fatigue yesterday that I couldn't study because I couldn't read, finally did study some, but not enough and when I was studying nothing stuck in my head. Then getting to school today after getting about 6 hours of sleep but having a migraine and being nauseous and worried about a test I'm having later that afternoon. Why would I not do well on a test? Why would school be so difficult?

 But I know there is a plan. I know that I'm over a quarter of the way into the semester. I know that I can do this and I'm not giving up now. So I've just gottta stick it out and do the best I can and rest when I can. This post was just to let people know what it's like to try to balance a chronic illness with a college (graduate student, though I don't think there is a difference in level) education. It takes some work, it takes some balance, it takes some dedication, but most of all it takes God. And here is a part Bible verse, part addended (yes I made an addendum to the Bible y'all, but someone else did it first and i liked it) thought to end on in relation to all of this. I can't worry about what's going to happen. I can't worry about tomorrow. I don't know what's going to happen. But I do know this. She is clothed in strength and dignity and she laughs with no fear of the future, for her hope is in me! Proverbs 31:25 (plus 6 words). If I can remember that He has my future in His control and that I have continue to have hope then it will all be ok and me and God will get through this semester a-ok, together. 

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. :)

My Visible Invisible Illness

Oftentimes, when people find out that I’m chronically ill I get asked the question “Would I rather have a visible or invisible iillness?” It’s such a hard question because there are “advantages” and “disadvantages” of each. Plus, I’ve never been on both sides of the coin before. How was I supposed to know if I would prefer having a visible illness if I didn’t know what it was like?

Well, now I kind of know. I have what I’m calling a visible invisible illness. How can I have a visible invisible illness you may ask? Easy. Sometimes my illness is visible and sometimes it’s not.

I have several different chronic illnesses and until about 3 weeks ago they were all invisible, until I was passed out on the floor (thanks Dysautonomia). It’s always been so frustrating to explain to people how I could look like a perfectly healthy 20 something female and yet be so sick at the same time. On the outside I’m the picture of health. On the inside my body is at war with itself 24/7 and no one can see that part or understand it but me.

But then, things started becoming more visible in my invisible illness world. I started using a wheelchair recently; especially when I’m at school to help with the extra weight of my book bag to prevent me from passing out as much. I don’t make it past 10 minutes standing any longer and that’s on a really good day. I also use it to counteract the pain from my Fibromyalgia and EDS. Let me tell ya what though, having a visible illness is very different than having an invisible illness. You are more noticeable. People start offering to do things for you that you can do yourself even in your wheelchair, but they feel sorry for you.

So now those visible invisible illnesses I was talking about. How does it feel to be someone with a visible invisible illness? Weird. That’s how. I use my wheelchair to get into school and class because I have my book bag. Then I walk to the bathroom. I see the same people both times and so I need to explain that I just need to use it for certain things because I have a condition that causes me to pass out sometimes. And they just stare. And it’s awkward. So I turn around and scurry back to class.

I also feel like I have to explain why some days I do not have to use a handicap parking space and some days I do. Some days my pain is less and some days it’s pretty high, but you can’t see it either way. Also lately my tiredness and fatigue is showing up on my face. I have had multiple people tell me the past two weeks that I look tired it is unreal. While part of me is excited that I’m finally starting to look as sick as I feel, I’m not excited that so many people are noticing the part that does not flatter me.

Anyway you cut it, having any type of illness visible or invisible is a journey every day. Either provides perspective for being grateful for the small things. But I think that being able to live in the realm of having a visible invisible illness gives you the best perspective. You know both sides of the story, how to accept anyone for themselves their uniqueness. Therefore, having a visible invisible illness seems like an amazing thing to me, so if that’s you, embrace yourself, because you are awesome! 

Why I Walk My Wheelchair to Class: Finding the Balance in Chronic Illness

One of the hardest things to do when you are chronically ill is finding the balance between laying in bed and doing absolutely nothing on the bad days and doing absolutely everything on your good days, so you in turn have 2 weeks of nothing but bad days. It is such a vicious cycle. And I am here to tell you, that I am the biggest failure of it of them all.

I am here to tell you that not even yesterday was I sitting on my front yard crying to one of my friends talking about the constant exhaustion and not knowing how to balance things and just wanting to have something positive in my life. Her in return telling me to do things small (like just one good thing for a small amount of time). And me in turn spending 12 hours in the hot sun today. FAILURE! We are in this together friends. I don't write these blogs because I have all the answers, I write them because they are my struggles and I know as someone with chronic illness that you probably do too.

I was originally going to title this blog "Am I really that disabled?: Finding the Balance in Chronic Illness"...but the real reason I'm writing this blog is because I'm having some minor, unnecessary wheelchair self-conscious issues. See I just started using this thing big time this week for school purposes. If I carry my backpack into class, I don't make it to class. I have to sit down in the middle of the street, parking lot, hallway, whatever, and wait for someone I know to help me to class because the ridiculous distance I have to park away from my classes (even with a handicap tag) plus the weight of my book bag (even with Kindle edition textbooks) does me in fast. So I'm wheelchair bound.

Lucky me, I've got a great pretty one. And I look great in it.

Unlucky for me are several things. Here I will make you a list.

• I get my own wheelchair out of my trunk, put it together, put my book bag on the back, and sit down and wheel off. I'm sure that looks weird. Like how many handicap people do that. 
• Once I get to my class I don't really need to use my wheelchair anymore necessarily because I don't have the book bag weight (unless I'm going somewhere further away, like to eat) so I look like a weirdo wheeling in and then walking to like the bathroom and water fountain and office and feel the need to explain to everyone when they ask me about it, even though it's no ones business. 
• My campus is not wheelchair friendly at all. The ramps are at a huge incline (for instance, the one in front of DISABILITY SERVICES was so steep, I took my wheelchair back to my car and packed it up and decided to walk because I could not get my chair up the ramp...in front of disability services...not joking) so it's super hard to wheel up them. Half the time when I finally get up them, there isn't a button to push to open the doors for me so I have to hope some one walks by to open the door for me, the doors aren't really wide enough for me to fit through comfortably, and the sidewalks are in horrible repair so it's REALLY hard to make the wheelchair go anywhere at any rate of speed because with my book bag, plus the chair, plus my low musculature and the fact that most of my dislocations happen in my upper extremities from my EDS it's ridiculous to try to get that thing to move fast (heck at all). Luckily, people have been awesomely accepting and willing to push me if they have been available :)
• The closest parking lot to my classes is a faculty lot. There are 3 handicap spaces in it, they are all filled by the time I get there (7:30 am) and rightly so, because there are at least 2 staff in the building my classes are in that are in wheelchairs and several other handicap people in other ways. Technically, as a handicap placard holder, I'm allowed to park in any handicap space, or any next closest space to my destination if a handicap space is not available. Technically, the next closest space that is available would be a faculty space that is not handicap in that lot. However, I've been going to a much further parking lot and parking in a handicap space there because it's a student lot and a handicap space and wheeling to class and praying someone will pick me up on the way, or I won't run out of energy because I don't want to send the faculty member I kick out of their space to the other side of campus to park. I feel like I'm not handicapped enough to make them forfeit their paid for parking space. However, my friend made me think about it last night. She asked me if it fatigues me more to go to the further away parking lot and go that far. I said yes, she told me that I should be parking in the faculty lot then, because I need that space. The faculty member can surely walk the extra feet, I surely need the extra energy to wheel across the bumpy sidewalks and down the hall to save that energy for my studies. Didn't think about it like that before. But that still makes me feel uneasy. So uneasy that....
• I have been seen pushing my own wheelchair from the farther away parking spaces to conserve energy and then if I need to sit down I will sit in the chair, take a break and get up and keep pushing it and then when I get in the building where it's all smooth, wheel down to class. Asinine I tell you. And if I thought I was concerned about people thinking I looked weird getting my wheelchair out of my car myself, and walking around the building myself without it throughout the day, how am I not concerned about pushing it down the street and not sitting in it? (I am by the way).

So these are some of the reasons why I'm even wondering if I'm disabled enough. Or what makes us disabled enough. But then I have days where I don't balance well. Then I'm reminded that I'm disabled. Pretty severely infact. 

Like today. My town has a block party every year. I always go all day because my mom works for a church that has a booth and my aunt and uncle's photo shop and portrait studio have a booth so I go to "help out" (hang out) with everyone. Well, we knew I was already having a rough-ish week. So I brought my wheelchair and did not get out of it much at all. The sidewalk was crowded though when mom and I went to go get lunch and the place we were going to get lunch from was literally 100 feet from where our booths were. So I parked my wheelchair and we walked. I almost passed out and had to sit down immediately in front of the grill at the food place. Then when we got back down to the booth (after eating) I had to sit down immediately again to keep from passing out. Both times were separated by at least 30 minutes if not longer. The only thing in common was walking 100 feet in heat. We should have brought my wheelchair. Oops. Or maybe I shouldn't have stayed the full day this year, knowing that I wasn't doing as well this year and I'd had a bad week already. 

I mean, it wasn't really a bad week (minus Thursday, that was bad) but it was the first week back to school and after 3 months of doctor's appointments and no other obligations or schedules. Having to be places at certain times, plus doctors appointments, plus homework, plus realizing that this stuff is serious and that the stuff you are learning if you learn it wrong could like kill people was exhausting. Plus, I have to be up at 6:45 and out at 7:15 every morning this past week. Eventually it will just be MWF and probably Thursdays for infusions (but I can sleep once I get to those). Lectures are 4 hours straight and that's hard for anyone, let alone someone with brain fog and chronic illnesses. 

I have to get back into the groove of things and remember to find the balance. I have to remember how to be good to myself and be good to the world. Another thing my friend said to me during our talk in my front yard yesterday was that she very rarely lets people see her for a full day because she wants people to see her when she is able to show them her good parts and her joy and I want to be like that too. Therefore, that means, I will probably only be able to see people during school hours for right now. But it's so true, when I'm tired I'm not a happy camper, and my mom gets a lot of that unfortunately. But pain and fatigue does nasty things to people.  But part of finding the balance is going to be making sure that I'm attempting to only show the good parts of myself to the world. That's the goal anyway. I told you...the word of the year is ambitious. 

So while I'm over here trying to find the balance of  living in the extremes of being too un-active and too active, wheelchair or no wheelchair, extrovert or introvert, joy or sorrow, etc. you work on that for yourself too and look at this picture of me today looking awesome in my wheelchair with my zebra t-shirt on embracing the fact that I can be ok being in a wheelchair in front of thousands of people. I guess. Some days I can be ok with needing help and knowing I need it. And that's the start to finding the balance.