Thursday, October 16, 2014

Thankful Thursday grief bubble

I am thankful to be almost through one of the most trying years of my existence.
I am thankful for coworkers that stand up for me.
I am thankful for making an impact on others.
I am thankful for my amazing boyfriend.
I am thankful for my siblings.
I am thankful for knowing I can survive.

Friday, September 12, 2014

#InvisibleIllnessAwarenessWeek #FitspoFriday

http://invisibleillnessweek.com

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Chronic Migraines, Asthma, Some undiagnosed thing, depression
2. I was diagnosed with it in the year: 2005 (ofish-fish 2007), 1995, 2014?,
3. But I had symptoms since: 2000, ever, 2000
4. The biggest adjustment I’ve had to make is: medications every day, avoiding foods I enjoy, dark days
5. Most people assume: That because I take preventative medicines I don't have any issues
6. The hardest part about mornings are: Checking in with my pain levels and breathing to see if I can do what I want to. Sometimes, convincing myself that what I enjoy is worth getting out of bed.
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: my cell phone
9. The hardest part about nights are: Nightmares I get from meds.
10. Each day I take __ pills & vitamins. (No comments, please) 12 types, 19 actual pills
11. Regarding alternative treatments I: can't afford the ones I want
12. If I had to choose between an invisible illness or visible I would choose: invisible. It's difficult to get help, but I know I miss out on a lot of other difficulties.
13. Regarding working and career: I'm afraid I'll have to give them up.
14. People would be surprised to know: how many symptoms I'm struggling with on an average work day.
15. The hardest thing to accept about my new reality has been: keeping boundaries other people don't need to, and don't always understand.
16. Something I never thought I could do with my illness that I did was: my job.
17. The commercials about my illness: are much faster than real time allows. "Take this pill, seconds later no pain, no depression."
18. Something I really miss doing since I was diagnosed is: eating tomatoes. Never canceling on people.
19. It was really hard to have to give up: tomatoes
20. A new hobby I have taken up since my diagnosis is: nothing
21. If I could have one day of feeling normal again I would: work a double. One where i go outside, wear my hair in a pony tail the whole time, type up the notes, and go out to drinks- bloody mary's- with my coworkers.
22. My illness has taught me: to find acceptance and everyone's reality is different.
23. Want to know a secret? One thing people say that gets under my skin is: "you can too."
24. But I love it when people: Give me the support I ask for.
25. My favorite motto, scripture, quote that gets me through tough times is: wear it like armor
26. When someone is diagnosed I’d like to tell them: You're not doing something wrong when you take care of yourself.
27. Something that has surprised me about living with an illness is: That I can be loved.
28. The nicest thing someone did for me when I wasn’t feeling well was: Bring me coffee, a hamburger and Watch my shows with me in the dark.
29. I’m involved with Invisible Illness Week because: it's fitspo to help others.
30. The fact that you read this list makes me feel: hopeful.

Thankful Thursday 9/11/14

dafsfd I am thankful for my dad, and all the times he was there for me.
I am thankful for my work and that good I can do.
I am thankful for the breath of children.
I am thankful for our police and firefighters
I am thankful for the Marines and Navy
I am thankful that the feeling in my gut that shows up when I see 9/11 written down passing another year.
I am thankful for my family.
I am thankful for Pumpkin Spice flavoring.
I am thankful for all the letters I can sign after my name.
I am thankful for amazing coworkers I can depend on.

Tuesday, September 9, 2014

O'fish-fish

For the most part the last week or two has been rather boring. There isn't a lot interesting going on at my work (Thank the monkeys.  We needed a some boring time.) My sister is visiting, but we don't sight see and such.  We hang.  It's the best.  I love that she and my boyfriend and pretty comfortable near each other already.  She's gonna be here a while.
I had a migraine for a week. I wish that was somehow interesting or abnormal. It still isn't.  I got a med change.  I want that to be interesting and abnormal too.  It still isn't.
I missed a bunch of work.  My coworkers noticed.  That matters to me.
However a few things are official that haven't been official very long:
I officially have an abnormal MRI and a normal EEG.  What does that mean?  No clue.  You could Google it.
I officially have an effective Essure procedure and can't have kids.
I officially have an MHP  (mental health professional) title.
I officially have a full time job (that I don't have to give up due to seizures). 

I officially got three apologies from a doctor that hadn't bothered to apologize about my symptoms previously.  Basically, I wish I wasn't ever around doctors EVER.  That's a bit irrational given the whole "undiagnosed neurological disorder" thing

Thursday, September 4, 2014

Thankful Thursday

I am thankful for my sister.
I am thankful for being able to say no.
I am thankful for the chris people in my life.
I am thankful for my boundaries
I am thankful for effective medications.
I am thankful for good causes and free tickets.
I am thankful for warm sweatshirts.
I am thankful for pumpkin spice latte.
I am thankful for fall.

Friday, August 29, 2014

Thankful Thursday 8/28

I am thankful for my mom and sister.
I am thankful for my boyfriend.
I am thankful for my cousin Drew returning home (and very proud of him). I am thankful for how inspiring he is not only to me, but to my mom and uncle.
I am thankful for hope.
I am thankful for the kids at work.
I am thankful for my amazing coworkers.
I am thankful for compassion, forgiveness and optimism that I can hold onto with minimal effort.
I am thankful for neurologists I believe will provide answers someday.  I am thankful I continue to have this belief and the energy to look for answers.
I am thankful for cough medicine.  Best thing EVER.
I am thankful for upcoming benefits and being able to provide for my spoonie self again.
I am thankful for supervisors that support "I'm gonna throw all your stuff away" sticky notes and emails. (Seriously #blessed)
I am thankful for my MHP and for all the work I've put in leading to another piece of paper that says I don't suck. for realzies.

Monday, August 25, 2014

Divergent Spoons

I am divergent. I am so many things that make up a good person .
I am erudite.  I am reading so much right now thanks to a schedule that prioritizes quiet personal activities.  My bookmark is a photo of my dead dad that popped up in an unopened book a week ago. I'm reading a memoir written for someone else's dead mom and listening to a teenager breathe and her phone battery drain. I mean, and a teenager's music collection. This is exhausting.
The photo popped up last week in a book I never opened before, but had dropped in my bag to read at work. It sat on a pile of things to pay attention to once the kids were asleep. That took a long time since a few of my coworkers (and I) got punched in the head that day.  I was relieved to see a picture of my dad and that I had my migraine that night. Not just any headache, but MY migraine complete with aura and slight nasea. Not a concussion or even broken glasses. (Thanks to years of practice catching glasses at concerts and bending them back after I slept on them.)  After years without the auras, they are back with a vengeance.  On the upside,  I am never going to take birth control again so I don't need to concern myself with the added risks related to my particular brand of annoyance pre migraine.   It's difficult to adjust to the world spinning in a set of strange uninvited colors though. Especially if I'm working; I am adjusting though. I know I got through grad school with rainbow spots streaming across books and papers; I can do this.
I love my job. Being able to work full time is great. I get to connect with the kids and they know when to expect me which makes both of our lives better. We are understaffed, and everyone is working tons of overtime.  I am pushing the importance of my boundaries regularly. No one expresses anger about it, but I am concerned that maybe I'm an asshole. I checked, I'm just chronically I'll (a spoonie). And right now, I keep having enough spoons to take care of things, but the only way to do that is to watch my schedule and to get all bur bur bur about my boundaries.  My supervisor says I'm awesome,  that I do a great job and thanks me for the time i put in. Oddly enough, I got thanked for just being on my shift by three coworkers last week.
My people worry though, there is a delicate balance in what I can and can't do. Every spoon is going into work and I think I am borrowing from my days off to do overtime. I'm teaching these kids self care though. And trying to role model coping skills like adapting your personal style and self care boxes. I'm also just making sure they don't kill themselves in the night. (Or the staff. I like my coworkers and myself most of the time. )
I had to gather up my spoons before work today. I slept in (also reads missed a call from my bestie). I meditated. I ate what someone handed me.  I came into work reminding myself of who I am and why I am here. I have just enough spoons today for a smooth shift. I am dauntless, ready to be brave and protect others from danger. I am abnegation, helping these kids is the most important thing. I am candor, being honest with myself, the staff and the kids about what I can and can't do is amazingly important.  I can be real here with them and I can be real about my spoons. Once I get home and lay down in bed, I don't know when I'll get up again. I got extras, but I don't think I have enough to keep being.