Thursday, August 29, 2013

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. 

Monday, August 26, 2013

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! 

Saturday, August 24, 2013

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 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. 

Saturday, August 17, 2013

"I swear, I'm not a drug addict." Or at least I thought I wasn't.

When you are a chronic illness and a chronic pain patient you are double whammied with constant scrutiny and speculation of if the pain is really in your head or if you are actually in constant physical pain and really need those tiny little white pills of bliss...narcotics that is.

But I'm not even going to really go into narcotics in this post, because, I'm tired of drama, and I feel like a post about narcotics about drama. And there are other drugs in my life besides narcotics.

I will say this about narcotics. It was narcotics that just last week (or two weeks ago) made me more speculative about drugs in general, and if you know me, you know I'm speculative of them majorly already. I have also been off of narcotics as off a full 7 days as of the time of this post (and I quit them cold turkey). I miss my pain pill every once in a while, but I really missed the years of living I didn't do when I was sedated. When a bottle says take up to 4 times per day as needed, that does not mean that you HAVE to take it at least once a day, if you don't need it. The pain will always be there, if the pain pill didn't get rid of it the day before, it's probably not gonna get rid of it today, so why are you still taking it? I'm not addicted to drugs, or am I?

That would be the end of the narcotic conversation I swear. Now on to the other drugs I'm talking about.

Before I had chronic illnesses I usually refused to even take Tylenol let alone anything stronger than that. I couldn't even swallow pills until I was like 16 or 17 and the only reason I learned then is because I had to learn how to swallow Midol because I have Endometriosis and PCOS and it hurt. Bad. Every month. So I took Midol. But nothing more than that. Then I started taking birth control to try to control that issue, but quit because it was a drug, and it wasn't natural, and I didn't believe in drugs. Seriously, guys. This was 10 years ago.

It gets better.

I was so opposed to drugs of any kind that I wouldn't even take the drugs I needed for my Ulcerative Colitis on the right schedule or every day so I wouldn't heal properly. I almost died a couple of times from that. My GP in North Carolina was awesome and he knew my views on drugs. Heck I wouldn't even use an acne cream he tried to give me. So when I moved away from NC almost 2 years ago now (wow, has it really been that long), and I went to see him for the last time, he found out my mom was in the waiting room and came out into the waiting room and told her to make sure I took my meds on time and on a schedule so that I wouldn't end up almost dying again. This was less than 2 years ago.

Today, I take 21 mandatory pills a day (4 for migraines, 2 for dysautonomia, 1 for GERD, 1 for Colitis, 3 for Fibromyalgia, 3 for "seizure like activity", 5 vitamins, 1 muscle relaxer,  and 1 beta blocker). I have the option of adding up to 6 more as needed (4 pain killers and 2 nausea pills) and also Tylenol as needed if I get a break through migraine and Benadryl as needed to calm my ANS.

If I don't take my meds, my whole system goes into overdrive and I twitch and jerk and can't get out of bed and get irritable and very symptomatic. Sounds like withdrawal, no?

I mean, yes, I realize that taking these medications does not make me a drug addict, because they are medically necessary for very real health conditions I have and I cannot survive without them. But seriously.

I looked up some "drug addict quotes" and one that came up was this: "Addiction isn't about using drugs. It's about what the drug does to your life." Enrock Maregesi

These drugs control my life, whether I want them to or not. If I take them I have side effects that are sometimes worse than not taking them in themselves. If I don't take them I can't get out of bed because I will probably pass out or be in so much pain it's unbearable. They give me some of my quality of life back. They give me hope and promise for a possible small amount of a future. But I am not addicted to them. I hope and pray for the day I no longer have to take them anymore. I have gotten off some, been put on others, been put off and back on some and back off again. But sometimes it makes you wonder how much the drugs have control of you, and how much you have control of the drugs.

One example, the one that really made me think about writing this blog, happened yesterday...well, it's been happening over the period of several months.

I've had SEVERE nausea for years, 24/7 for years upon years, probably longer than 4, but we will go for 4. Well. None of the first line of defense nausea meds work for me. Zofran gives me killer migraines. Phenegren knocks me out, but that doesn't work for during the day, for obvious reasons. I've tired others, but I don't really remember the exact reasons why they don't work. But they don't. Well. There is this other drug, called Kytril, that is apparently 2000 bucks a month if you don't have insurance, that apparently works for everyone, that apparently Medicaid didn't wanna pay for for obvious reasons. So we've been trying to get a prior authorization for me for it since March!!! No lie. Like, I just wanna not be nauseous so I can attempt to eat. And the insurance is making me try every nausea med there is first, which is fine, but can we try them faster. If it gives me a migraine the first time I take it, do I really have to "try it" for 2 weeks. Because I wanna move on.

Anyways, I got THE CALL yesterday from the nurse at the GI office that I've been waiting for, the prior authorization was approved. I was getting the Kytril. I could not have been on the phone with my pharmacy faster, asking them how soon I could have it. Imagine my dismay when I found out they had to order it and the soonest they could get it was Monday. This was Friday, did I seriously have to live 3 more days with nausea, when I was so close to promises of symptom relief?

No, not me, I begged them to call the other pharmacies locally and see if any of them had it. Then when I found out one of them did, I called them and asked how fast they could have it filled. This was all taking place between 8 and 9 PM on a Friday night. I woke up at 4 AM on Saturday morning excited to go get my med from the pharmacy at 8. I got there, and they still hadn't faxed it properly and again begged to have it resolved so I could get the med (now just 2 days earlier). I finally got the Kytril this morning around 10:30 AM after finding out last night around 6 PM that it was approved for me to receive it. After at least 4 years of 24/7 nausea, and fighting with the insurance since March. I finally got the med and got it in me (and I am very happy to report that it does indeed work, and I have not noticed any major side effects yet).

My point in this story is, 10 years ago, I would not have even considered such a strong med, or a med at all ( I would just stick to my ginger, chiropractor, acupuncture route-which I do use, but it doesn't cut it). 2 years ago I would have said, "Oh, that's fine, I'll just wait to pick it up Monday." So what has changed in me that now, I need to have a prescription as soon as it is available? What has changed in me that has gone from I hate even going to the doctor for a physical to I'm at one almost every day? What has changed in me that I have gone from I won't try anything but natural approaches, to I'll try any med once?

I would like to think that my personality hasn't changed. That you can't just one day wake up and be an addict. But when someone promises you the hope of quality of life and you are chronically ill, you'll do almost anything.

You just have to remember perspective. Like the quote said (or didn't say, but what I'm taking from it), don't let the drugs take control of your life. You control your life, let the drugs help you feel better so that you can have a better quality of life, but don't let them control you. When you are automatically doling narcotics into your pill box on a schedule, it's time to quit them cold turkey. When you are willing to drive to the pharmacy at 3 in the morning to get an anti-nausea med so you can feel better, it's time to re-evaluate who has control of your life.

Speaking of who has control of your life. Saw this prayer from  on Pinterest a couple of days ago and thought it would be a perfect way to end this blog post. As a person with chronic illness, we have to remember that medications (drugs) have a very real place in our lives, and serve a purpose. So if you are feeling a little bit close to where I was (am), and are struggling with medications, read this prayer, pray it, and realize you aren't alone. There are so many of us fighting this battle together.

We aren't addicts, we need this medication to help us. Even the narcotics, as long as you're using them right :) Fight on friend, fight on :)

Sunday, August 11, 2013

Chronic Pain: It's not just physical

When people first find out I am a person that lives in chronic pain (not to mention the other disabilities I have), they really just act like oh, so you just hurt all the time. Everyone hurts, it's not a big deal, why do you act like it's such a big deal?

Well, first of all, besides the fact of my blog being titled "Chronic pain: It's not just physical" the physical part has a lot to do with it. If you don't live in chronic pain you don't understand it. Sure you sprain your ankle, bump into a wall, have a headache, you understand pain. You break your leg and you may even understand chronic pain on a temporary level. But here's the deal folks. You don't live at excruciating levels of pain, day in and out, every day, for years. Most of the time I am in so much pain I am nauseous, dizzy, can't think straight, sweaty. But can't look like I'm in pain, because that's not socially acceptable. And when people say "Hey, how are you?" The answer should always be, "Good, how are you?" because no one wants to hear the life vom that really wants to come out of your mouth. I would classify my pain on any given day at a 7-8. There is a really cool pain scale, located here that provides descriptors to go with each of the numbers instead of those little stupid faces. I really like the one with descriptors because it provides actual symptoms instead of little stupid faces. You know why I don't like little stupid faces. Because this graphic is extremely accurate:

Ya know why, because we've been living at a 6 or above every day, 24 hours a day, for the past however long we've been dealing with it. Me, I'm going on 12+ years. Living at a 6 or above. I had a very severe back injury this week, and through working it out with several different practitioners I was given the comment "I can't believe you are walking, let alone drove yourself to this appointment." And yes, it hurt, a whole lot worse, you know that if you got here through Facebook, but I'm a chronic pain warrior, it doesn't stop me. What would I do if pain stopped me, I would never do anything again.

Anyways, I'm here to talk about why pain isn't just physical. When you are in the kind of pain I'm talking about. 24 hour a day pain, mind numbing, excruciating takes over your life. It literally eats you alive. PAIN IS YOUR LIFE! Pain affects your emotions, your spiritual realm, your mental state.I'm gonna spend just a little bit of time (because that back injury is acting up into my typing fingers) to explain what I mean by each one. Just so you can get a glimpse into why when someone says, "Well, everyone hurts, it's not a big deal." Why it really is a big deal.

First of all, this week has been an emotional train wreck. I've struggled back and forth in my head of whether or not I would delve into any of these "incidents" on my blog. And I think I will delve into one later, but it is unresolved at this point and I think I am over-emoting it at this point (because my pain is so extremely high this week because of that back injury...see this is proving my point already) and if someone happens to read this that knows these people that could be bad news bears for me. So at this point. I'm just going to say that, I was tried to the max this week. I was in pain to the max this week. I had an injury that should have been better in 2-4 days max and it still isn't healed a full 7 days later. The only thing that I can figure is that every time an emotional bombshell was thrown at me, I could almost instantly feel everything in my body tightening back up and the injury getting worse and me walking straight back to my bed and reaching for another pain killer.

Let's just say I had a complete and utter break down at an appointment and kind of lost it and felt so bad for the practitioner I was with. She was very polite and calm and kept telling me she just couldn't imagine what it was like to live my life, she couldn't imagine how difficult it was. But when you are trying so dang hard and keep failing and keep getting told that you aren't progressing and there is nothing more to do, it gets old. I would say the majority of my summer, I spent at least 3 of 5 (and most weeks 4-5 of 5) days a week at some kind of therapy, treatment, appointment of some kind and I'm not getting better. In fact I'm getting worse. And that gets old fast. That eats at your emotions fast. Like real quick. And I just kind of lost it, when someone else was losing faith in me.

Lastly, the biggest emotional thing I've struggled with is feeling like a burden or having people not wanting me around, it seems like. Like if I get so lucky to be invited to do something with a friend or group of friends the entire time has to be planned around me and then they realize how much of a hassle it is and then they stop inviting. I mean they have to plan where we eat around me (gluten free--maybe more free soon, I've been having a lot of strange reactions lately and lots of salt), what we do (can't be too hot, too cold, involve standing, or adrenaline), how long (I need my naps and if I do anything too long, I'll just fall asleep while we are out), and what time (can't be too late, too early, or during an appointment). I mean I'm almost frustrated for them. So why should they invite me? Shouldn't I just have to lay in bed all day...ummm I know the answer is no to this, but seriously, I also realize this would get old fast. I'm also struggling with frustrating my physicians. I know I'm a frustrating patient. But I'm a frustrated patient. Please don't give up on me.

Let's just say my emotions have me feeling all Meredith Grey this week saying:

I mean it's not like I chose this life. I just want someone beside me in it. I do have one great friend now in town, but more than one is always nice :)

*I'm writing my spiritual section from a Christian perspective, but I imagine it would work for any spiritual believe you have.*

Let's just say this. I really miss church. A lot. I mean I "go to" church just about every week. I watch church on my laptop from my bed and it's good. But there is something about sitting in a sanctuary, surrounded by fellow believers, singing worship music at the top of your lungs, with your hands raised to the sky, worshiping the One who made you, that is so much different than laying in your bed in your living room in pain kind of paying attention, while you might kind of be checking Facebook at the same time.

I don't go to church because I'm in too much pain. You can read that as emotional or physical. I blame it on physical. The church I am currently attending has about a 1.5 hour service in an auditorium like room so the seating is very painful for me and the flooring is cement so any standing is out of the question. They also use flashing and strobe like lights so I would likely have seizure like activity while there and that would be no good of course. Plus, there is a guy that hugs people at the front door and I don't like to be hugged. These are my excuses. But all it is doing is driving me further away from God.

Listening on my laptop, is not the same as being in worship at the House of God. I also, no longer, have a small group or a Bible study, so I am not in the Word weekly on assignment. I am not disciplined enough to make myself do it, because I "don't feel good" or "I'm too tired" or "it hurts too write in my journal or workbook". But seriously someone, somewhere reading this needs to hold me accountable and get me involved somewhere and get me in the Word. Because, seriously, I love God, but I need to love Him more.

Everywhere I drive is only Christian music in my car, but that's not enough. I pray almost all the time, but that's not enough. But anyways, pain takes over your spiritual life too. You hurt so you don't go to church, so you don't go to Bible study, so you stop doing daily reading, so on and so on. It takes a toll. And then when stupid emotional stuff happens you complete freak out and it snowballs, because you aren't rooted where you need to be.

The last way that I'm going to talk about pain not being physical as is mental. I'm talking like cognitive. Like you hurt so bad, you can't function properly and do simple tasks. Or forget simple things. Or forget simple words. Or do really stupid things.

I don't really know what to say about this, but I will give you some examples from recent memory (which is odd, since I'm talking about having a bad one in this section, but I'm not in much pain right now, ironically).

  • Leaving the gas on on the stove. And I'm not talking like with a pot or anything on there. Oh no, not for me. I'm too special for that. I'm talking like take the pot off, serve the food, clean the pot, put away the dishes, pack the left overs in the fridge, go to bed, and 2 hours later mom yells in my room "WHY IS THE GAS ON THE STOVE  ON!!!" with nothing on the stove.
  • Not saving really important documents on the computer. Like your graduate thesis, that you've been working on for 9 months. That is over 126 pages long. That you've re-edited so many times it's no where near the same as the first time. Over 9 months, did I say that, I could have had a baby by now, who doesn't hit save on that?
  • Not remembering why I am doing simple stuff, like why I went into the kitchen, or what I was going to the store for, or ya know where my house is. Yeah, you heard that, there have been multiple times I was driving and didn't even know which way to go home. 
  • Coming up with weird words for things, like how about that time I called my car a guitar. 
  • How about having a document in my hand and not being able to type the words on the piece of paper in my hand into the computer, because that is just way too hard. Like my brain can't comprehend how to transfer information anywhere. 
  • This also goes for reading and writing. I can't read fast or write fast. If you guys knew how long these blogs took to write, it would frighten you. It takes me on average about 45 minutes to read a 10 page chapter and I usually will only comprehend about half of it, if that. I'm also extremely dyslexic with both numbers and letters. Thank God for those red squiggly lines and computers. I would get nowhere in life without them, and sometimes with words like from and form I still get in major trouble, like in my thesis, because those red squiggly lines don't catch words that are spelled with one letter switched. Dangit.

So when you find out someone is a chronic pain warrior, realize that it is so much more than just being in pain. And no, not everyone deals with that.  We function in amazing ways. We have to keep our emotions in check, balance our spirituality with it (even if that is just meditation for you, it's so important), and overcome the mental blocks that come with it as well. It still ceases to amaze me how we get from one day to the other with people not even realizing how hard it is, because we are graceful and tactful, and probably way more polite than we should be (most of the time). There are definitely days where, I'm not so sure I can do this anymore. But then I remember, I don't really have a choice, so I better suck it up and get to moving on. For now, while I'm still trying to figure out why this pain was given to me and how to manage it (that's a post coming up soon); I will remember this final picture in my head and keep in mind that I'm a survivor and an over-comer, and if you are a chronic pain warrior, so are you. 

Friday, August 9, 2013


Today is my birthday, well for another 40 minutes, which may or may not mean it will still be my birthday when I finish this blog post. 

Earlier this week I believe I promised some sappy birthday post and this may or may not turn into it. But this is the birthday post you're getting. So deal with it. Well, now that I'm formulating in my head, I'm pretty sure it's gonna be pretty sappy. 

So like basically, I know everyone dies. But on July 1st when I found out there is a  very real possibility that I may die quicker than I thought I was going to, or that if I didn't die quicker than I thought I was going to that pretty much every day (well not like each day, but like each month or year, or whatever) was going to be a little more painful, a little more functioning lost, a little less normal than my already a little less than normal life...I had a little depression, then I had a little wake up call. 

I started 'exercising' (read leg lifts and crunches in bed), I started eating better (for a while until this week), I started being happy, I cut drama out of my life. I made the choice to be happy. And, most importantly, I made the choice to follow my dreams. Ya know why, because I ain't dead yet. 

Many with Pure Autonomic Failure, according to Vanderbilt University, live at least 20 years after initial onset of symptoms (and most live well beyond that with proper management of symptoms, this is not me saying I am dropping dead in 20 years, hence why I'm still following my dreams). 

Even if I do drop dead in 20 years, that is 20 years from now. What am I supposed to, pack up all my stuff, lay in my bed with my dog, my iPhone, and a calendar and start counting down the days...if that were the case I would be down to 19 years, 10 months, and 22 days since I was diagnosed...but who knows when I technically started displaying the exact symptoms. No one knows the day or the hour but my Lord. And that is not how I'm gonna spend my last 20 years for sure. Plus, who knows, I could step out in front of a bus tomorrow and this blog post could be for naught, right? No one knows. 3 years ago I sure didn't think I would be writing this blog post ever. I thought I was invincible. I thought I was going to be spending 30 years teaching those with disabilities, not the one being so disabled.

Anyways, all this is to say, that finding out so close to my birthday has made me really think about the value of a birthday. The meaning of a birthday. What it means to truly value life. To not want to waste what you are given. Even if you aren't able to do much. There is a plan for you if you are here. So I've spent the last month trying to focus on my plan, but it hasn't been easy. 

There's been a lot of reasons, but that's a different blog post. On to this blog post. 

I decided a couple weeks ago that I was going to do 28 Random Acts of Kindness for my birthday this year, which I am, I just couldn't do right now because I'm out of money in my bank account. But I am going to do it throughout the month (and do a blog on it). So you may be getting an act of kindness coming your way at some point this month :) This is one way I'm living and celebrating the value of life. I want to prove that life isn't about me, it's about others. Everyone can help someone no matter how big or small. 

But as we've gotten closer to my actual birthday, things have gone down hill fast.

 I've had a terrible, horrible, no good, very bad week. A lot of reasons, again for another blog post. But then, there were great things too. That helped me remember the value of my life and that I really am as ambitious that people keep telling me I am. 

See, it's always been this running joke that I'm kind of an over achiever. It's kind of been a joke that I've been a little type A. It's kind of been a joke that I'm a little ambitious. 

So the first great part of my birthday week, of course, would be getting a present from my best friend in the mail for my birthday (which she insisted I open right now and not wait til my birthday to open)...and part of it is a t-shirt from Under Armour that simply says "Ambitious". It's a running shirt. It is to wear to train for the half marathon that I will run/walk by the end of next year with my friend Beth. Because that might be considered a little ambitious for someone that can't stand up for 5 minutes without passing out, but it defines me on a deeper level too. 

Ambitious (adj): Having or showing a strong desire or determination to succeed.

Yeah, that might be me. I'm the person that can't give up no matter what you tell me. Seriously, it's not going to happen. You cannot tell me I am disabled, I'm just differently abled. I will find a way to do it, if I want to do it. It may not be the normal way to do it. But it will be a close second. It may take me 1.25 years instead of 3 months to train for a half marathon that I will most likely have to walk most of and will most likely have to stay in bed for a month afterwards at least because of dysautonomia, but I will do that. That's called ambition. 

Yesterday, I decided that I was going to coordinate one of the events for October's Dysautonomia Awareness Month on Campus, and raising money for Dysautonomia International. I'm hoping to get some help from some people in the program. Right now the plan is to do like a "Cupcake wars for a Cause". We are going to have people enter to bake their best cupcake in a timed setting with secret ingredients and then they will sell them during lunch and dinner and which ever team sells the most will win a gift card and all the money from the entry fee and the sold cupcakes will go to Dysautonomia International. 

Today, I woke up and went to my saline infusion. It took up like 4.5 hours. While I was at my infusion Beth came to visit me and she brought me chocolate and we declared (loudly) that I was not going to be sick on my birthday. So I decided that I was going to not not feel good for the rest of the day. 

I finished my infusion, went out to lunch with mom and some of her co-workers at Monical's and got some yummy gluten free pizza. Then I went to the chiropractor to fix my oh so broken back (again another blog post). Then I ran some errands and came home to take a nap, I needed to save those spoons for my party. 

Then we went to my aunt and uncle's house for a cookout and what was supposed to be a swim party, but it was raining and pretty late, so that part was left out. We stayed until almost 10 o'clock. I can't remember the last time I stayed out until almost 10 o'clock at night. That in itself was ambitious. 

I think I'm going to make my "theme" of this year 'Ambitious'. In this year, I will, God willing, finish my thesis, finish my last classes for dietetics school, start and finish my dietetics internship, maybe find a way to at least work maybe one day a week somewhere, train for a half marathon, learn to manage my pain, be a better me, and hopefully many, many more things. These are all very ambitious things for a 'normal' person, let alone a person with so many chronic illnesses. So bring it on year 28. Let's do this, I've never been stopped yet, and a little stupid disease and gonna stop me now, I gotta lot of living left to do! :) 

Tuesday, August 6, 2013

An Acrostic: Dysautonomia Bites

Dysautonomia Bites :) 
Yearning to get out of bed
Salty snacks
Achey all over from myofasical, neuropathic, and generalized pain
Untimely symptoms
Treatments every day
Odors, lights, and sounds bother me! 
Nausea never lets up
Offensive bathroom habits and issues
Outrageous fatigue
Melodramatic blood pressure and heart rate
Intolerance to medications, then...
Annoying side effects

Blood pooling and compression stockings...soo sexy
IV's weekly
Tendency to faint...a lot
Expected to function normally because
Society doesn't see my illness. 

Saturday, August 3, 2013

Making a Choice

Lately, it seems like everything in my life has been negative, stressful, emotional, over stimulating, or all of the above rolled in to one. This isn't going to be a long post because I don't quite honestly have it in me. But I needed to post something. Because I haven't in a good long while. I expect there will be a longer, eloquent, meaningful post this week as it is almost my birthday and I get sappy and weird around my birthday. Which, in retrospect, is probably why everything is being so overstimulating right now anyway, but it won't be tonight.

When I first started admitting and officially being diagnosed with things about 2 or 3 or 4 years ago I was in counseling for other issues and was lucky that I had an awesome therapist :) In one of our sessions, I told her that I was going to make a choice. No matter how sick I was that day (and this was when I "just" had/knew about Colitis and Celiac mind you), I was going to get out of bed every day because I knew that the day I went to bed was the day I would spend the rest of my life in bed. 

And it's true. 

There have been days here lately where I have almost spent the whole day in bed. I have left to go get coffee, or moved to the couch, or small things like that, but many days I have been not able to do anything other than that. And the next day it is SO MUCH HARDER to get out of bed. I still do it, because I promised, but I don't want to. 

Now, I'm going back to school in 17 days when I can barely make it 3 hours out for a doctor's appointment. And I have to like get up, get dressed nicely, and go sit at school for 5 hours a day and learn things. No way Jose. Not happening. But it will happen because it's my choice and because I've worked too dang hard up to this point to throw it all away. 

I may need to set my alarm for 4 AM (which means I will get 1 hour of sleep since I usually get to sleep about 3 AM thanks to insomnia and pain) so that I can cry in bed for 3 hours before I go off to school. But I will go to school every day. And I will rock my semester. I will do this. Because I am making the choice now. 

I will never not get out of bed one day. Because I know I am the person that if I spend one day in bed, I will never get out of bed again. 

I may cry every day. I may throw up. I may spend 22 hours and 17 minutes in immense pain of every day. I may pass out here and there. I may have to use my wheelchair. But I will get out of bed. 

I will stand up and get dressed and put a smile on my face. When I am asked in the hallway how I'm feeling I will say I'm fine because no one really cares to know the truth. Then I will come home and lay in bed some more and cry. 

I will win. Because I am not the girl with Celiac, Colitis, Endometriosis, PCOS, Fibromyalgia, Hypokalemia, Thoracic Outlet Syndrome, Ehlers Danlos Syndrome, Dysautonomia, and whatever else rolls of my diagnosis sheet that day. I'm Megger's and I will be come next May (or August if I have to graduate late) one kick butt dietitian because I am making the choice to get out of bed every day.