Giving Thanks

A Time to Give Thanks

What's the one thing you're most thankful for? Write a list of three things you're thankful for, excited about, or inspired by.

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One of my favorite Bible verses (I know I say that a lot) is Colossians 3:15-17 (NIV) and it says:

"Let the peace of Christ rule in your hearts, since as members of one body you were called into peace. And be thankful. Let the message of Christ dwell among you richly as you teach and admonish one another with all wisdom through psalms, hymns, and songs from the Spirit, singing to God with gratitude in your hearts. And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him."

This doesn't say when life is going grand be thankful, or when you win a million be thankful, or when you get an A on a test, or your dream job, or...better yet...when God heals all your pain and diseases be thankful. It says be thankful to God for it in whatever you do and do it because the peace of Christ rules in your heart.

So with all that said, the thing I'm most thankful for this year, after ya know, being alive still cause there were some touch and go times in there, especially lately. I am most thankful for now and always my life with chronic illness. Ya know why, because God tells me I'm supposed to be. And I seriously try to live this way. I really, really do. And if you know me I hope you know that.

I have met some of the most wonderful friends I would have never met if I didn't have dysautonomia, or EDS, or mito, or whatever else I have because they are in online support groups. I can offer my support and medical expertise (what little I have of it). I try to be positive despite the constant negative barrage of information being thrown at my friends and myself. I'm thankful this is my mission. From the first diagnosis I've always said if I'm going to have this, there is a reason God wants me to, so I might as well find it, so I will be as thankful as I can be. This does not mean I don't have bad days and cry, but I'm usually still thankful on those days too, just overwhelmed.

I'm also thankful for/inspired by:

1- The fact that my entire family is coming over to my house to enjoy a Thanksgiving meal that I prepared mostly by myself today. No matter how bad it hurts and no matter how bad it stinks that I probably can't even eat any of it at all, it's still awesome that I have a family I want to spend two days in pain standing in a kitchen cooking for. A lot of people don't have that.

2- That my thesis is approved and maybe finally getting underway soon so I can start helping people get off narcotics for their fibromyalgia because drug laws are evil, but that's a whole other blog post. ;)

3- I'm inspired by all the people that I interact and meet with on a daily basis that have to live with chronic illnesses like I do. I constantly have people telling me how I'm so strong and I'm so inspirational and let me tell ya people, I'm no hero compared to some of my friends. I have friends that are mothers of anywhere from 1-4 kids dealing with as severe problems as I have. I have friends with kids as young as 2 up to 18 dealing with as severe of problems as I have. There is no way I'm the hero in this story, they are. I'm thankful they keep me around. That's for sure.

Top Three Tuesday

List three questions you have for other patients.

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1. What is your favorite alternative therapy to relieve pain or that helps you and why? What have you been able to do because of starting this treatment? 

2. What is your most annoying symptom, the one that you wish would go away just for 24 hours so you could remember what it would feel like to be without it for one day again? What would you do on the day you didn't have that symptom? 

3. Who is your favorite doctor and why is he/she your favorite doctor? Tell me a story about your favorite interaction. 

Finding the Balance During the Holiday Season

Give us some tips you use to balance the holidays and your health. How do you stay in your own boundaries and make sure you follow your health regime/plan?

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Well, this NHBPM blog entry topic literally makes me laugh out loud (so did yesterdays topic but I was too busy overdoing it yesterday to have time to write so look for that soon), because anyone who has gotten to know me knows I don't do balance well. It's almost comical how well I don't do balance. 

I feel good and do thing after thing after thing after thing until I feel really bad and lay in bed and tell my mom I'm dying over and over and over, wash, rinse, repeat. Or something like that. 

But surprisingly, this holiday season, so far, fingers crossed, I have done a great job at finding the balance. 

Maybe it's because I have just spent so much time in the hospital and have no desire to end up there again soon. Maybe it's because I'm not in school or work this holiday season so I'm ridiculously bored and have always loved the holidays and have time to spread it out. I don't know, but here is how I'm finding the balance for the holidays. 

*I have completed all my Christmas shopping (minus my sister who hasn't given me a list yet *ahem*) and did it all online one person at a time one day at a time so I didn't get overwhelmed. I didn't have to get out of bed. And I have amazon prime and was able to get most of my gifts off of there so I usually didn't even have to pay shipping! Just don't tell that I started with my best friend and my dog...haha

*I've decorated my room for Christmas and just did a small Christmas tree, a nativity scene that was already pre-assembled, and a sign to hang on the door. I also am in the process of making an advent calendar but I'm making that a little at a time since it can't be used until December 1st anyway.

*The house can't be decorated until after Thanksgiving according to my mom so that will be done at a slower pace with help.

*Say yes to a Christmas party here or there. Just know that you can't be the first guest there and the last guest out. Have your pre-planned "exit strategy" and regrets for having to leave early. Make sure you have in your head what you are going to say politely for why you aren't eating so you aren't sitting there explaining to every person "Well, I have this condition, and it makes me allergic to" or "I have a feeding tube so" not the place for that, been there done that. But go with your friends, have fun, just not too much fun, you will pay for it later. ;)

*For Thanksgiving, it's a little more difficult this year. We always do it at my house and I always do the cooking. First off, the cleaning has been done in phases, one room at a time one large thing at a time like steam cleaning the floors only one at a time.

*When the food starts getting cooked we planned for a lot of things that can be started the day before so not all the things are being made the day of so that I don't get exhausted from cooking everything so that I'm not cranky during the meal. There mom I said it. 

*We also seriously trimmed down our menu this year due to several of the people having several dinners to go to, and me not being able to eat any of the food I'm cooking. So that will save a lot of energy too. 

These are just some small ways that you can help find some balance and still enjoy a full holiday celebration with your family. Like I'm on a feeding tube 24 hours a day and still cooking a pretty full Thanksgiving turkey dinner at my house. It's still possible guys. You just have to know your limits and what you can do physically and emotionally. It's going to be hard, but it will be worth it to have my whole family together and I love cooking! Yummo, can't wait! 

I Still Remember

“I Still Remember…”
Free write a post that starts with this line and describes an unforgettable moment in your health journey. (For example, Cancer free, a diagnosis, etc.)

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I still remember standing in my classroom with the phone in my hand listening to my wonderful, amazing doctor on the other end of the phone telling me I have to go to the hospital now while my 5 lovely, talented in their own way, unique middle school students with autism were I'm sure busy destroying my classroom because I was not directing them in an activity or keeping them on a schedule. 

I remember that day perfectly. I remember feeling "fine" for me up until the phone call that I don't even know how it got patched through to my room since we weren't allowed personal calls in our rooms. I remember telling my doctor that it was ok, I would go to the hospital after work, it was only 4 hours away and him telling me I didn't have 4 hours to wait, in fact he would rather send an ambulance to come get me rather than me drive the 3 miles there. I remember then not feeling so well. The adrenaline catching up to me. Feeling faint. 

Looking out in the hallway and whispering across the hall to a fellow teacher to come watch my class I need to go tell the principal I need to go to the hospital my doctor just called and said so. I remember being nervous walking down to his office because we didn't always get along and wondering what he would say and when I told him what the doctor said he said leave now, he would pray for me. I remember not even knowing what to do or who to call. 

I remember getting to the hospital and being directly admitted and whisked away for a blood transfusion. I had no time to waste. My hemoglobin was so low there was barely enough blood in my body for it to make one round. I remember my doctor being there even though there were hospitalists because he knew I didn't do well with change. I remember him explaining what was going on and him thanking me for asking for that one more blood test because we might not have caught this otherwise and I wouldn't have made it. 

You see I also remember the days before that, the countless doctors appointments with no answers and the negative tests and me always saying let's just do one more test. Well this one struck gold. Just a simple CBC. And one the week before that, and the week before that. Showed my hemoglobin was dropping super fast. Which meant I was bleeding somewhere and that along with a whole bunch of abdominal pain and weird symptoms while I was eating. Which meant I got to have a colonoscopy and an EGD at the age of 24 and it was not fun at all. And that lead to the day that I remember the most, the day I just described. The day that I joined the chronic illness forces officially forever. The first time I almost died. The day that I was diagnosed with colitis and celiac disease. November 13, 2009, a Friday none the less. It's a day I will never forget. There have been many more unforgettable days in the life of chronic illness since, but this is the one that sticks out the most. I don't think I will ever forget how I felt this day. The day my life changed forever. 

Advice Column

Top Three Tuesday

Give three pieces of advice you would give to a caregiver.

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If I could or would give advice to a caregiver (which I guess would be my mom) my advice would be: 

1) Remember always that it's not our fault that we are sick. We wish that we could be doing things like normal people. We wish that we could be working and taking care of ourselves. We wish that we didn't need a caregiver. We wish that we could lead normal lives. We wish for that more than anything in the world. Please don't take out your frustration with having to care for us on us. It's not our fault. We would rather be taking care of you, most likely. 

2) Remember to take time for your self and to take care of your health. You are no good to either one of us if you are not healthy. And please don't bring your germs around me. I definitely don't need those around my immune system. 

3) Do things that are fun for you. You can't always be drug down taking care of sick people. Especially you mom. You've spent your whole life taking care of me and my sister. You retired once. Then you went back to work to take care of me. Do something fun for you. I know I get mad when you go out with your friends when I'm stuck in bed, but it's because I'm jealous. Do it anyway. But not everyday. ;)

Well That Was Embarrassing....NHBPM

What’s the most awkward situation your health condition ever put you in? (Don’t be bashful, we’re all friends here). Maybe you can look back on it now and laugh, but it wasn't so funny then.

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Well, let's see chronic illness, especially as many as I have, leads to all sorts of embarrassing situations. 

But I've only got about 30 minutes before my counseling session, and I don't feel like starting another section on my epidemiology paper so I'm just gonna list a couple real quick and not really go into much detail on them and leave them up to your imagination. 

Passing out in the choir loft at church (multiple times) and not really knowing why yet because church is just too dang long, but I just had to keep being in choir! 

Having to keep getting up in the middle of every meeting imaginable multiple times (and I'm talking 5 or 6, not 1 or 2) because I had to go to the bathroom again...and these meetings are just an hour long. 

And on that note, having accidents when I'm a grown adult and learning to bring a change of clothes with me everywhere I go. 

Throwing up on myself in the living room for some unknown reason because I didn't even know I had to throw up it just happened. 

Having to sit in the middle of any store I'm at longer than 10 minutes because I can't stand up longer than that! Thank God I finally have my wheelchair.

And I think that's about enough of my embarrassment for you. How about you? Do you have any embarrassing moments you'd like to share with the chronic illness world? I know you have some, chronic illness isn't all clean and pretty guys! 

Favorite Fridays: I Will Follow You NHBPM

I am really far behind already so I'm going to try to catch up today. By doing Friday, Saturday, Sunday, and Monday's blog today. So enjoy. :)

Who are your favorite people to follow on social media? (Twitter, Facebook, Instagram, etc.)

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On Twitter I follow mostly more professional/health related people, Food Network Chefs and some friends. Some of my favorites are: 

Alton Brown is my absolute favorite because he uses all post-its and it cracks me up because it makes so many other people so mad. 

I like Diana Driscoll at Pretty Ill.com because she explains illnesses that we have so well and does so much to get studies done and advocacy done for us. She is pretty awesome. 

I follow Invisible Illness Week for updates and so I can share updates during II Week. 

I like Udi's Gluten Free because they are always bringing awareness for Celiac and doing giveaways!

Finally, I like to follow Today's Dietitan for a more professional network. They post new articles everyday and new dietitans that are up and coming and doing new things. 

As far as Facebook goes I don''t really "follow" as many people there. I just have mainly my friends there. But I will say I have changed to most of my friends are chronically ill and some of my friends that are not chronically ill complain about how much health stuff I post. Sorry about it. It's my life. Get over it. I do follow a couple of things that I enjoy though on Facebook. 

One being the Chronic Perseverance page. They just post inspirational quotes every day for those that are chronically ill and disabled. 

The Life as a Zebra foundation is the same way. She posts inspirational quotes and posts what she is doing to bring awareness and raise research money. 

On Instagram I follow mainly chefs from the Food Network so I can dream about eating their food, or any food for that matter. I mean who wouldn't want to eat things like:

What Alex Guarnaschelli makes 

or what Elizabeth Falkner makes

or Ree Drumond makes

or on and on and on. 

And that my friends are the favorites of who I follow on social media sites for the most part. :)

First Day on the Job: NHBPM

With all my time in the hospital and "getting my groove back" at home I've forgotten that November is WEGO health's National Health Blog Post Month so I'm way behind in that. So I'm starting today, on Day 14, then I will do Day 1-13 in December. Some days there may be more than one blog because the WEGO blog prompts are pretty short this year and let's face it, I always got something to say here lately, so the WEGO blogs will always have the prompt title followed by NHBPM like above.

So today's is called first day on the job and the prompt says:

Working with a chronic illness can be a difficult balance. What should you divulge, what should you hold back, and how do you balance it all? Do you have advice for others?

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I'm not currently working but I was working a couple of years ago and I'm taking a break from a program that I'm hopefully going back to that requires clinical hours in a hospital setting as if you are working so it's like I had/have a job. So I'll be writing from the perspective of the first day of my clinical rotation this past fall. 

It's always hard when you have a chronic illness to figure out how much is too much to tell and not to tell. But it gets better, I guess, with time. 

I think it's really important to be upfront that you have a medical condition in case you have a medical emergency, but on the flip side you don't want to be too forthcoming so that they can't use it against you. 

I think that's where I had some of my issues at my old job. I got close to an administrator, then all the sudden a lot of stuff that I was saying was coming back to be used against me and I eventually lost my job. 

I also think on your first day it's important to be the best you you can be on your worst day possible. 

What do I mean by this? 

Well, here's an example. Usually I use a wheelchair if there's a chance I have to stand up for long periods of time. But on my first day of clinical this semester I was trying to put a good first impression in so I didn't use my wheelchair for the whole 4 hour shift. At the end of the shift I mentioned that it would be easier if I could use it and would that be possible and they said why, you don't need to use it, you just worked the whole 4 hours without it today. What they didn't know is I was in bed in severe pain for a week afterwards including the day I went back and the cycle continued. Because I couldn't use my chair. So because I tried to tough it out I made myself suffer for weeks on end. 

Make sure the staff/your boss knows that you might work slower and have accommodations for other things as well

I also think it's important somebody knows what to do in an emergency for you specifically. Ya know beyond the obvious call 911. 

Make sure any appointments you have are talked about with your supervisor (as far as in time off not what they are for) as soon as you find out about them so that you can get the time off for them.

Beyond that I wouldn't divulge much more because it will most likely be used against you, unfortunately. 

Also, don't take the office staffs and your supervisors misunderstandings of you and your illness to much to heart. It's hard for people to understand what you're going through. Heck, it's hard for you to understand what you're going through most days. If you're that concerned about it then offer to give an in-service about your condition to help your office mates understand you a little bit better. 

Whatever you do on your first day on the job, remember to relax and try to enjoy it. Congratulations on feeling well enough to have a job to begin with! Go get 'em! 

The Bagel Breakdown and How the Bible Saved Me

So this feeding tube thing. It's not going so well. Ya might have picked up on that from my Facebook posts. Well, I haven't even posted the half of it. Sure I've posted the physical half of it, most of it, I probably haven't even posted the half of that actually...but I sure haven't posted the mental half of it.

I know my last post talked about how I "live my life transparently" for chronic illness vengeance and advocacy or something like that, but until Sunday at the grocery customer service desk I didn't even realize I wasn't even being transparent with myself so I definitely wasn't being transparent with you, my esteemed readers. So this, this blog will be transparent. And I'm already bawling in my bedroom writing it and have been every time I think about writing it for the past 1.5 days.

Because it hurts. I hurt. I'm broken beyond repair right now. I know everybody has pain. I know everybody's broken, I've written about that before. But taking away food from a foodie? That was the straw that broke the camels back. I've been dealing with this for 12 years. I've been doing it with God and humor on my side with a few faithful friends along the way. And I still have all 3 of those. They're just harder to feel right now because before I also had food. Comfort food. And lots of it.

Before I was sick and I would get stressed out I would run and run and run until I couldn't run anymore. After I got sick I would eat and eat and eat until I couldn't eat anymore and cook and cook and cook. Now I can still cook. But I can't eat what I cook. Then I have doctors telling me they want me to eat. So I get all excited and I do eat and it just puts me in a lot of pain and I throw it up or have to go to the bathroom immediately, or can't go to the bathroom at all. It's painful, causes bloating and distension. It causes my autonomic nervous system to go off kilter so my heart rate and blood pressure go crazy, I've had super bad headaches too. So even though I'm encouraged to eat it really doesn't go that well. Except for one thing I figured out, bagels. For some reason I can tolerate a bagel (or most other bread items--gluten free of course) without any side effects at all.

So off to the grocery store I went where I knew they carried my favorite brand of gluten free bagel and got some other items that I wanted to try and some things for my mom and got to the bagel aisle and there were no bagels in stock, so I start reading the tags. There are tags for 2 gluten free bagels, neither of which is the brand I want to buy. Both brands that have tags are brands I know that I do not care for, and if you've tried gluten free you know "do not care for" is code for "tastes like cardboard". I ask the stoker there and he tells me to go to customer service at which point I am told that the brand I would like is not carried there at all anymore even though they have other items there from the same brand. More words are exchanged and a promise to call the next day (which still hasn't come by the way). And then it happened. In the middle of the grocery store, because I can't have a bagel, the only food I know I won't react to, I start bawling all over the place. I can't stop. All I wanted was a bagel...with blueberry cream cheese to be exact...and now I could never have it again?!

The poor guy at customer service couldn't figure out why I was so upset, I'm sure customers had no idea what was going on, heck I didn't even know what was going on. Why was this bagel so darn important to me? Looking back with a more clear vision 2 days later I think in my head that bagel represented all the food I can never eat again. I mean you're talking to someone studying dietetics in school who watches Food Network 10 hours a day usually, loves to cook, and loves to eat and try all kinds of new and exotic foods...who now eats through a tube and can't even chew or taste things anymore. It's a big loss. I've been under a lot of stress with some doctor stuff and some other things too and it all just came to a head, but man was I a mess.

Then yesterday I decide I'm going to buy James MacDonald's book called "When Life is Hard." and re-read it because I've already read it once. I was reading the foreward and in it there was reference to Psalm 42:3 and it says in big bold letters "My tears have been my food day and night, while they say to me all the day long. 'Where is your God?'" Now this person was coming from a very different context. But to someone who literally broke down crying in the grocery store the day before (and had broken down previous and subsequent times for other foods and cravings) because she can't tolerate anything but her tube feed the words "my tears have been my food day and night" stopped her in her tracks. I almost couldn't breathe. I immediately got my Bible out and started figuring out the context and found out that it was from the famous verses "As the deer pants..." verses Psalm 42 which I should have known off the top of my head, but anyway...then if it couldn't get any more solidifying for me, vs. 5 comes along and it says: "Why, my soul, are you downcast? Why so disturbed within me? Put your hope in God, for I will yet praise him, my savior and my God." and I'm stopped dead in my tracks again, because it has my keyword HOPE in it.

I'm telling y'all with everything I've got going on in my life right now there was no better comfort than knowing two verses away from each other was my BIGGEST problem and God's BIGGEST promise all wrapped up in one tiny package tied up with string! He even places the question of "Where is your God?" right there in the middle, it's almost like he's mocking us saying why are you even asking where am I? I'm getting ready to tell you. I'm right here. Keeping your problems close. Giving you hope. Just like always. Wrapping you up tight. Holding you in the palm of my hand.

Living My Life Transparently

I've been struggling a lot the past month. More than most, but not the most. I haven't been blogging because I've been in and out of the hospital and it really takes a lot of energy to blog. But I have been posting on Facebook to keep my friends and family updated because it's a whole heck of a lot easier to do that than to call 327 people (or however many it is on any given day) to update them of what each stupid doctor said that day, especially when I'm on so many pain meds and feeling so lousy and can barely lift my phone. So I post a quick Facebook update or picture of my tube falling out or something to that affect. 

However, there is always a RISK in this. Because not everyone wants to see all the medical drama all the time. In fact, most people don't want to see it at all. So my posts get hid from their timeline and I am erased from their life. Or I get repeated messages in my inbox either telling me that I post way too much about my medical life or giving me suggestions for a miracle cure. Both of which are mega annoying. But I need to update people and that is an easy way to do it. So get over it. Really. It's my Facebook. You knew I was sick when you became my friend because I am only friends with people who I actually have relationships with. So I'm sorry. This is my life. I am sick. Very sick. Sometimes more sick than others. It is a BIG part of my life. I will not apologize for it. And I should not have to.

I am also a Christian. I also love music. I also love my friends. I also hate hospitals. And hospitalists. And pharmacies. And ignorant doctors. And ER's. And people who do not understand me. And I do not understand my friends that say that they want to be my friend and understand me and are so supportive to my face but then I hear that they said x, y, z behind my back because they really don't understand me. Please ask me questions to my face. Please let me be my own advocate. Please try me. I have all the answers and they do not contradict themselves. I promise. Please do not call me a hypochondriac. Or tell me what I'm telling you is impossible. I will tell you why it is. I know the science of why it is even. This is why I live my life transparently. Because I want to be understood so that I do not get hurt as often.

But sometimes I feel like living my life so transparently is what ends up getting me hurt in the first place. Like if I didn't offer up so much information then nobody would have anything to hurt me with. Recently I spent time with a really, really good friend who lives her very sick life more like this...all closed off and hidden like...and ya know what's interesting??? We were talking...and she gets hurt by her friends for the same things that I do too even though she shares very little if any information. So how do we both live our lives very differently and share very different amounts of information and both get the "same shit on different days" from different friends about our chronic illnesses (which is the same by the way)?

I was driving home from visiting this friend and another friend with the same illness and a doctors visit in Indianapolis this week and the song "Iris" came on my I phone and the chorus just cut through me like a knife and I realized part of it spoke to my friend and part of it spoke to me in how we live our lives and why we do what we do and why it hurts so much. The lyrics are:

"And I don't want the world to see me
'Cause I don't think that they'd understand
When everything's made to be broken
I just want you to know who I am"

 And all in one chorus (because music speaks to me so clearly), in a song I've heard at least a million and a half times, it's like the skies opened up and it was clear to me why my friend stays so quiet about her health conditions and why I'm so vocal about mine.

She doesn't want to say anything because she doesn't think anyone will truly understand what she is going through and know who she is. Me on the other hand. I'm so vocal because I want people to know who I am and I don't want there to be questions and I want people to understand me. I don't want the world to see me as a stigma or this weird thing in the corner that has to be handled with care or treated differently. I also want people to realize that I know my limitations and that I should be invited to everything or treated the same and if I can't do it I will say no, but please don't assume I can't do it unless I tell you I can't.

If you are a doctor and I come to you telling you a list of symptoms please don't tell me it's impossible. If you are a pharmacist and you are out of my medicine and tell me you are going to order it and have it the next day please do so and don't forget and not have it for a week later and then it's out of stock nationwide and it's so hard to get it's not even funny. If you are a doctor and get a note from another doctor that doesn't particularly like me that says I'm not well adjusted and have anxiety and on and on and have issues with having so many chronic illnesses and walk into the room and tell me I haven't done ANYTHING since being a teacher 3 years ago please do not tell me that I have a mental health disorder and need to learn that just because I have several diseases that the diseases do not have me.

You do not even know me. None of you do. None of you know what it's really like to live like this. Nobody knows what it's like to get tired from walking to the bathroom. Or to have to carry 15 pounds on your back all the time for your food. Or to get stares from people because of your food. Or to have to carve out around 10-20+ hours a week for doctor/nurse/treatment time. To take 19 pills plus 17 syringes full of meds every day. To not be able to eat without throwing up and to get most of your calories through a tube in your small intestine. Eating really is something that is missed so much. Especially with Thanksgiving coming up.

But I am still happy. I am still me. I still am pursuing a master's degree with a thesis option, slowly but surely. I will finish one day. I still run a support group on Facebook. I am an active member in several other support groups. I am in a wonderful C-group through my church. I "attend" church weekly online. I have friends I meet with regularly for community encouragement and support. I try to find volunteer opportunities and do good deeds when they are available. I wake up every day and get out of bed, which many people with my amount of conditions can't say they do.

And this is why I live my life transparently. This is why I post medical stuff on my Facebook page. Because I want people to know no matter how much crap I go through (and my friends are consequently going through because we have the same issues and there is no mass awareness yet of our conditions). I want people to understand me. I want people to stay up to date with what is going on. Most of my Facebook friends are chronically ill as well so it isn't a big deal to them. And the rest of them are supposedly my friends so I would assume you would want to know what is going on as well. I know it gets overwhelming to read about. But imagine what it's like actually living it. Just sayin'.

I don't know why I felt so compelled to write all this out. And it doesn't really feel tied together to me. But it just seemed like I had to get it out there. That I will say what I want to say when I want to say it because I want to live my life transparently. I don't care what people think of me. I want to bring awareness to these stupid conditions. I want people to understand what living with chronic illnesses is like. I want people to understand that we don't just lay in bed all day. That it's not all fun and collecting money from the government. I don't think that anyone will ever understand me completely (or anyone with a chronic illness for that matter). But we are all broken. And I just want you to know who I am. So I'm going to continue living my life transparently. For me. And for my friends who don't feel so comfortable doing so. So we can all be understood a little more. Hopefully.