Thursday, September 12, 2013

A Picture is Worth a Thousand Words

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

You always hear those of us with Invisible Illnesses say that you can't see our illnesses and that you will never truly be able to understand how horrible we feel because you just can't ever get how we feel inside our bodies because on the outside of our bodies we look completely normal. So I'm going to share a couple of pictures with you of how I looked on the outside and caption them with how I felt on the inside.  I'm in no way "seeking attention" by doing this, asking for sympathy, eliciting emotion, or anything like that. I'm just trying to let you know how we look on the outside when we feel as bad as we do on the inside. I hope this gives you some glimpse into the life of someone with an invisible illness.
This was right when I was first getting sick. It was Christmas 2005. Everyone was commenting on how great I looked because I was so thin and I always had so much color in my cheeks. No one knew the color was from flushing from standing up too long and the skinniness was from severe weight loss due to going to the bathroom sometimes over 20 times a day from colitis that was undiagnosed at this point. I went to this conference and at this point knew I was extremely tired all the time and couldn't tolerate a lot of foods, but they told me I had mono and that's all I thought was wrong with me.  In this picture we had just finished staying up past midnight talking, just like any normal college kid at a winter Christian week long conference, right?
This was right after I had landed in Mississippi for a class trip for my Mississippi Delta Blues class. I was so excited for this trip. Unfortunately the plane ride made me violently ill (which we would have known would have happened if we knew I had dysautonomia, in fact right after this picture was taken I vomited from the pressure change) and my colitis was acting up (which we also didn't know I had yet), so I spent most of the trip in my authentic blues cabin in a cotton field in the middle of the crossroads with my favorite music professor ever rubbing my back and feeding my prophylactic medications while everyone else had the trip of a lifetime.

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

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

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

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

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

This is today, me getting my IV that I get every week to make sure that I have enough blood volume to make my blood pressure stay a little bit above 100 at all times (and sometimes it doesn't even work for the whole week, if I'm standing up for a LONG time at say like...clinicals). I get 2 liters of Saline, every Thursday, it takes 4 hours out of my week. I study or do Facebook, or do this (blog), sometimes I call it Thirsty Thursday, sometimes I call it Spa day. Either way, I need it to survive. But on the other side of this arm, I look like this: 
at 8:00 in the morning at the infusion center (having to wake up at 6:45 to get there) after going to sleep finally at around 3:30 in the morning because of being in such bad pain I couldn't sleep which I so endearingly call painsomnia. Also, on the inside of this body I'm super nauseous, have a headache on the verge of a migraine, don't want to stand up to go to the bathroom because I'm dizzy because all my fluids aren't in me yet. Also, my pain is at a super intense level despite a massage and a chiropractic adjustment yesterday because it feels as if both my wrists, elbows, knees, ankles, all my toes, and my lower back and hips are out of place. Most of my muscles hurt too, undoubtedly from the massage, because it's the day after. But I have no fever, or signs of infection according to my nurse, and look perfectly healthy, right? 

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

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