An Open Letter To All Who Interact with Princess

Dear People of the World:

Please do not, I repeat, DO NOT ask Princess questions.  In fact it is probably best if you just completely avoid eye contact with her, and ignore her altogether.

I know you all may be aware of her, *ahem* outgoing personality.  It’s a tad, shall we say, exuberant.  She has lots to say, and might even roll it all into a charming, rhyming song.  The song might even be somewhat inappropriate, if you’re lucky.  

Here is what we know:

She is a ball of joy.  She brings sunshine and happiness wherever she goes.  She also is VERY honest.  As in, “My mom has hair on her vagina” honest.  Yep, she tells people that. She just recently told a friend, "I was born in jail, because my mom got arrested for beating up a cop".  The friend was amused, and sad to find out the story wasn't true. Not only does she tell crazy true things, she makes up awesome lies.

We are working on the honesty in terms of what she should and should NOT share. For instance, it is not okay for her to tell the people at McDonald’s that “my mom says your food is garbage”.  Also, we try to teach her not to remark on people’s unfortunate bodily issues, because she will just try to find ways to comment in a positive way, without being offensive. Think, “Ummm, I like your shiny purple hair”, or, “Wow!  Those earrings are giant!”  Even, “I like your nose!!” 

Recently, she has upped the ante, so to speak. She is old enough to fully understand most of the adult conversations, but not old enough to know what to repeat, and what gets filed under “no one’s business”.  Therefore, I tend to watch very carefully what conversations we have when she is around.  Life usually intervenes, and I don’t get to filter enough information before it gets to her brain.

For instance:

The other day, she was at the doctor’s office with her dad.  At some point, she chose to tell the doctor, “My brother got a bunch of knives and plays with them.  He LOVES knives.”  Thanks, sweetie.  This admission resulted in a talk with dear ole dad, about how knives may not be the best option for toys for our 12 year old son.  I think my husband’s response was, “Noted.  Is that all?”

To wrap this up:

• ·         I may need to find a good esthetician to wax my bikini area
• ·         Princess talks too much
• ·         We suck at parenting
• ·         Ugly people should avoid our daughter. And our son too, because he carries knives.

An oldie but a goodie...

(Note: this was a post I found a very long time ago.  In February 2011, to be precise-which is like total eons, in the internet world-and it was this list that moved me to "come out" to many of the people I am close to about what I was struggling with. I found a blog that encouraged people with invisible illnesses to answer these 30 questions.  I did it, and posted it, before I had time to chicken out. I encourage everyone struggling with an unseen illness to do the same. It can be helpful, cathartic, and eye-opening.)

Feel free to steal this list, and make it your own.


30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:Fibromyalgia (and Rheumatoid Arthritis, Reynaud's Phenomenon, and maybe a few more they haven't yet diagnosed, I will keep you posted...)
2. I was diagnosed with it in the year:2011
3. But I had symptoms since:2007
4. The biggest adjustment I’ve had to make is:Taking life slower, trying to reduce my stress and obligations, and accepting that I have it to begin with
5. Most people assume:I am happy, healthy, energetic and my usual self
6. The hardest part about mornings are:Trying to get the energy to get up
7. My favorite medical TV show is:House
8. A gadget I couldn’t live without is: my minivan with all the automated doors and seats
9. The hardest part about nights are:Hoping I get a good night's sleep, without waking up from something that then gets my mind racing
10. Each day I take 17 pills & vitamins. Unless I have pain I can't live with.  Then, up to 16 more pills.
11. Regarding alternative treatments I:am finding great success. My acupuncturist helped me find foods that cause problems, and my therapist is helping me to accept my new "normal".
12. If I had to choose between an invisible illness or visible I would choose:Visible, because I think I wouldn't feel as pathetic as I have
13. Regarding working and career:I am SOOOOOOO grateful to have a lot of flexibility, or I would have had to take disability.
14. People would be surprised to know:That I have this. I have only told close friends, because the pity was unbearable. However, I am learning that this is not chicken pox-it will not go away in 7-10 days.  I will have it forever, and I feel like "coming clean" will make me come to terms with it all better.
15. The hardest thing to accept about my new reality has been:Not doing too much-everyone I know knows I am GO GO GO all day long, and I feel some guilt with giving that up.  SOME guilt-working on it!
16. Something I never thought I could do with my illness that I did was:Feel serene with the life I have. I am getting better about this every day, and look forward to not thinking about my illness most of the day.
17. The commercials about my illness:Make me happy, because it is not seen as a "pretend" illness as much anymore
18. Something I really miss doing since I was diagnosed is:Going constantly all day long, taking on tons of obligations, getting it all done, until I pass out from exhaustion. Sick, I know, but I do miss it. Feeling like Superwoman was nice, especially when I was soooo good at it!
19. It was really hard to have to give up:Dairy.  Still coming to terms with that one.
20. A new hobby I have taken up since my diagnosis is: relaxing.  It's amazing how unfamiliar a concept that was to me.
21. If I could have one day of feeling normal again I would: Do incredibly active things with my kids and husband-ziplining- hiking, skiing, everything I took for granted before.
22. My illness has taught me: That i really do have a fantastic support system, and stopping to smell the roses ain't all bad
23. Want to know a secret? One thing people say that gets under my skin is: Are you SURE you're ok?
24. But I love it when people:accept my situation, and remember. It is super sweet when my husband reads a label to make sure I can have it first.  It's a small thing, but means so much.
25. My favorite motto, scripture, quote that gets me through tough times is: This is your "new normal".  not really a favorite quote per se, but my therapist says it CONSTANTLY!
26. When someone is diagnosed I’d like to tell them: Seek out things that help you accept your new situation: blogs, articles, books, others
27. Something that has surprised me about living with an illness is: I am ultimately more at peace. Happier isn't the right word, but peace is what I have gained.  I may not always be feeling my best, but I have found peace with my situation.  If you ask me how I am, I may gripe, complain, and whine a bit.  But, underneath it all, I have found more peace than I ever thought possible.  Strange, but true.
28. The nicest thing someone did for me when I wasn’t feeling well was: Take care of me-I have truly the best husband  in the world, that has never doubted anything-not my pain, not my limitations, nothing. Sometimes, things like illnesses bring out the worst in people, it certainly did in me, for a bit.  However, it has brought out more good in an already amazing man.  Just when I was getting used to how fantastic he was, he upped the ante.
29. I’m involved with Invisible Illness Week because: I used to think that getting involved with causes was too much work-but now, things like this make ME feel better-my new life's work
30. The fact that you read this list makes me feel: Honest