Invisible Illness 2015: My 30 Things.

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I blog about all sorts of things, for a myriad of different businesses, topics, passions, work related things, and the like. But by far, blogging about the things that have affected my daily life are the most important to me…next to my authoring works. I’ve chosen to give my list of 30 things for Invisible Illness week that is sneaking up on us at the end of September. If by sharing I can help someone else feel not as alone, then I’ve done my job.

To those of you reading who know me personally, you might know most of this, or none of this. I’ve grown very selective on who I share things with for so many reasons. To those of you who only know my author-self, I appreciate your support, and confidence boosting messages online. To those of you just finding me through the #iiweek15, I look forward to meeting you. I love sharing sick stories, learning about new treatments and ways of living!

30 Things about My Invisible Illness(es)

1. The illness I live with is: A myriad of autoimmune diseases and disorders. Some of them are: PCOS, Scleroderma, SLE, Sjorgren’s, Raynaud’s, pre-can, fluctuating Hashi’s & more.
2. I was diagnosed with it in the year: This has been an ongoing thing for years. Some diagnoses were made in 2008, others in 2010, and 2012. Many are still being “Confirmed” and “named” even this year.
3. But I had symptoms since: I was a teenager, and definitely once pregnancies began.
4. The biggest adjustment I’ve had to make is: how I do things, and when. Working out of the house for your normal “work day” was nixed back in 2010 when my body couldn’t keep up with demands, or recover from being exposed to any sort of germ.
5. Most people assume: I’m a reclusive bitch.
6. The hardest part about mornings are: forcing myself to get out of my perfectly warmed cocoon, regardless of if I’m awake or asleep. The other shitty part is eating a handful of pills for breakfast.
7. My favorite medical TV show is: I don’t watch a ton of medical shows. The Doctors, sometimes… ER. Sex sent me to the ER. <– that one was pretty hilarious!
8. A gadget I couldn’t live without is: Skully, my steering wheel’s suicide knob.
9. The hardest part about nights are: how quiet and lonely and LONG they are. And sort of boring….one can only watch the Brazilian Booty infomercial so many times…
10. Each day I take _12-16_ pills & vitamins. (No comments, please) If I’m flaring, I take more.
11. Regarding alternative treatments I: LOVE them. I rarely speak of the “extra” things I take, or try, or attempt, because the judgment, ridicule, and comments from the world’s peanut gallery, and even some “friends”, is entirely unnecessary, and too stressful.
12. If I had to choose between an invisible illness or visible I would choose: Visible. In a heartbeat. No one judges what they CAN SEE… but it’s amazing to hear all about their feelings on what they can’t see. If not visible or invisible, I’d settle for something known. Many people in my “groups” say that even cancer would be better…. (NOT saying cancer is worse or better, only that people KNOW, SYMPATHIZE, and UNDERSTAND it better.)
13. Regarding working and career: I’m thankful that I made a career shift as I saw my deterioration happening. Now I can make my own schedules, publish & write when I can, and working part time teaching adults about all things intimate keeps me sane.
14. People would be surprised to know: I HATE talking about weight, especially my own. I HATE that being “skinny” is pointed out be every person who is insecure about their own weight, and made fun of. I am INSECURE about MY OWN WEIGHT. I don’t choose to be *this* thin…
15. The hardest thing to accept about my new reality has been: that this is my forever.
16. Something I never thought I could do with my illness that I did was: Standing up for justice for others, knowing the repercussions on my own health would suffer. Taking care of my sick hooligans when I was next to death, myself. Continuing my life with as little changes as possible, with all of this heavy crap.
17. The commercials about my illness: Commercials? There are rarely commercials about any of my illnesses! But if I see ONE MORE about erectile dysfunction…ima flip my lid!
18. Something I really miss doing since I was diagnosed is: Eating everything, and anything I wanted. Pushing myself to my old very high, very great physical tolerance levels.
19. It was really hard to have to give up: foods. Not the healthy kind…the processed, fake, unhealthy and delicious kinds. And booze. Sigh.
20. A new hobby I have taken up since my diagnosis is: taking care of me.
21. If I could have one day of feeling normal again I would: Oh my…there isn’t enough time in the day for all I would cram in. Swimming, playing, roller blading, biking, eating and eating and eating massive amounts of gluten, dairy, eggs and soy….maybe even rolling in a tub of wheat. I would also just sit, and enjoy not having multiple body parts and organs hurting and refusing to work.
22. My illness has taught me: That I am one strong, stubborn woman. That depending on others is foolish. Friends don’t stay. Hoping people will understand what you’re going through, when really, they’ll never get it. Or even try. It’s also taught me what’s important in life. I don’t worry about being right, or first, or caring what someone down the block is doing. Worrying about me and my own is enough. Judgment is inevitable, but it always hurts. Smiles and laughter are the best and easiest things to use to keep people from asking about your illness.
23. Want to know a secret? One thing people say that gets under my skin is: “Maybe you should change your diet.” “I have this new drink mix that will cure your issues!” “I get my nutrition from this powder drink mix.” “Just be more positive.” “Many have it worse than you.” “I’ll pray for you.”
24. But I love it when people: acknowledge my sickness, and congratulate and celebrate my strengths.
25. My favorite motto, scripture, quote that gets me through tough times is: “to thine own self be true.” Shakespeare. This speaks volumes to me, and is tattooed on my arm. My reminder to be me, not wear a false face (as so many I know do), and to do what I need. Always.
26. When someone is diagnosed I’d like to tell them: the truth. Finding your coping mechanisms, your strengths, and personal ways to deal are so important. Listening to the crowd, the peanut gallery, isn’t always the best. And for the love of God, stay away from the internet.
27. Something that has surprised me about living with an illness is: I am surprisingly good at it. Unless I’m in extreme amounts of physical pain, or something is flaring…many would never know, or guess, of the things I deal with daily.
28. The nicest thing someone did for me when I wasn’t feeling well was: brings me groceries; brings me hospital ice; takes their vacation days to help me out; doesn’t run away when my life is more chaotic & more than you can handle; checks in on me regularly; sits with me when it’s real bad. Thanks parents, husband, children, LB & BG.
29. I’m involved with Invisible Illness Week because: there needs to be more recognition, more public awareness, and general awareness about these invisible diseases! Whether they are physical or mental! The only way we’re going to get the money for research, studies, and possible cures (Someday) is to help secure more funding in these categories!
30. The fact that you read this list makes me feel: thankful & hopeful.

I’m very excited to be participating in this years Invisible Illness Week!