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. 

1 comment:

  1. Hello, I'm stopping by for a visit via Invisible Illness Awareness website.
    I look forward to seeing you this year's conference.
    Thanks for sharing your 30 Things About My Illness list. :)