slumber party!

Earlier this week the two lovely ladies that I nannied for a summer came to have a slumber party! It was so fun. There was copious amounts of glitter (and glitter glue) involved. We played so many board games. We gushed about celebrity crushes. We even created blogs for each of them to start sharing their own stories. They girls (so they're not really "girls" anymore...they're growing so quickly!) and I'm so thrilled that we were able to hang out. Mac and cheese was consumed (with hotdogs for the meat eaters of the bunch). And sparkling grape juice was imbibed from fancy wine glasses. We even pretended we were sommeliers for a bit and the girls were absolutely hilarious with their descriptions of the "wine." We all slept 'neath the lights of the Christmas tree and had pancakes for breakfast! What fun. It's been too long since I've had a slumber party. I hope we get to do it again!

and so it begins...

crafts for pretty much everyone they know
my creations are resting on the back of the chair

glitter on glitter glue

each present unique based on the things the recipient likes

bedtime...finally! 

autographed ornament

the daily fresh new hell: an update--a continuation in the saga of health insurance + chronic disease

I know y'all have just been dying for an update on how the health insurance situation turned out. You can read part one of that journey to refresh your memories.

Don't want to read it all again? Here's the cliff notes version: I switched health insurance plans this August from my family's plan to an individual plan through student health insurance at my job/school. Something happened and it turned out that I didn't have health insurance for about a month--after I had already been visiting physicians. After 6 unnecessary visits and 4 unnecessary phone calls to deal with the situation, I thought I mostly had it squared away. I still didn't know if my deductible from the previous plan would roll over (most major medical plans allow you to do this, you just have to ask), but that didn't seem like the most pressing concern in September.

Fast forward to the first week of November.

I received an email from the student health insurance coordinator at UNMC. This is 2.5 months after I've written a letter to UNMC asking to have my deductible roll over. And she has just now finally received it. She is thoroughly confused (she was on vacation during the September situation) because according to her, I'm not even enrolled in the student health plan and no one has paid for it. The situation is convoluted and complicated, so I call her back instead of trying to mess with an email that will end up being more confusing than helpful (5th unnecessary phone call).

Turns out the insurance was never charged to my student account because of a mistake by the student services folks, so it wasn't ever paid for by my graduate assistantship. Two more unnecessary visits (7th and 8th unnecessary visits) to HR and accounting and about 15 emails later, it was paid for and dealt with.

So I thought.

Fast forward two weeks when I called the pharmacy for a medication refill and they informed me that I didn't have health insurance again. Because my new pharmacy is amazing, they called the insurance company several times (6th, 7th, and 8th unnecessary phone calls) to try and figure out what was happening--side note: initially this prescription was mistakenly ordered by a physician for me two weeks prior during the whole "it's not paid for" debacle and it ran normally as though I had insurance, so at least I knew I had insurance through that point. The insurance company informed the pharmacy that my plan had been cancelled (which, by the way, I don't think it's super legal to cancel someone's insurance plan without notifying them).

After several more phone calls (9th and 10th unnecessary phone calls) and a very strongly worded email (16th unnecessary email) to pretty much everyone I had been in contact with over the past semester regarding my health insurance and all state and national political representatives, it seems that I have health insurance again and a guarantee that they won't screw up in the future (and a string of about another 10 emails--17th-26th unnecessary emails). It turns out that because my plan was emergently issued in September, it didn't go through the correct channels at BCBS/Ascension and they cancelled the plan on November 20th (~2 months after they first issued it after I discovered I was without health insurance) (11th and 12th unnecessary phone calls).

It was finally re-instated 3 months to the day after the plan was supposed to initially begin and truthfully, I'm not all that hopeful that something else won't go wrong again. Again, I say that it is not the fault of Affordable Care Act. There were processes that went wrong on both the UNMC and Blue Cross Blue Shield sides--processes that have been in place far longer than the ACA has existed. I'd like to imagine that each company is evaluating their procedures to prevent this from happening to someone else, but honestly I'm not so confident that they are. But I do know that something needs to change because my experience was not acceptable.

If one of the largest employers and the largest insurance provider in Nebraska can't figure out how to coordinate their systems in order to actually insure people, how in the world is there hope for everyone else? 

Oh, and I STILL don't know if my deductible is going to roll over...

thankful.

Over the past couple of weeks I've been thinking quite a bit about graduation and getting a job in the "real world" in August when my program ends. I won't lie, this is causing a fair amount of anxiety because I pretty much have no idea what in the world I want to do--or where in the world I want to do it--(and because it seems that I'm asked the "What kind of job are you going to get after graduation?" question at least 4 times per day over the past month).

But I've also felt an overwhelming feeling of calm/peace/wholeness/gratitude (some mix of the aforementioned plus others...basically I've got all the feels lately!) for how fortunate I have been in the past year and a half to so easily transition into public health. I'm thankful for the community that surrounds me and encourages me each day. And for how fortunate I am to have found a career path that truly makes me feel alive with passion and enthusiasm.

Even in the past month, amidst final paper writing and several assignments (just one more to turn in by Friday...and I can't seem to make myself sit down and spend the 20 minutes to finish it...so many more fun Christmas-y things to do!), I have had some of the coolest experiences of my life. I just need to take a second to thank all of you for how awesome you are and how much you've shaped my life.

I'm thankful for:

• my family being close so we can visit frequently. 
• UNMC COM Class of 2016 and 2017 friends who continue to include me in on things and encourage me to eat caramel apples and truffles after a huge meal (thanks Jill and Mer). 
• Ballet Nebraska friends who enrich my life with amazing dance--on stage and in the studio--but also are the most wonderful of friends. 
• ELCA World Hunger folks in Nebraska and Chicago who teach me new things and also are fierce believers that you don't need to have years of experience in order to make a difference and do work. 

• Nebraska AIDS Project staff and volunteers who allow me to have a productive outlet for my peer educator side. And for pushing me outside of my comfort zone to become a HIV tester and counselor trainer. 
• the students that I work with at UNMC who inspire me each day to continue making a difference for those who are underserved in the Omaha community. 
• my schooling. My, oh my has the past year and half gone by quickly (technically I "graduate" with my first degree on Friday, but I'm not even going to the ceremony...next year though!) and I've learned so much. 

• the women of the MCH program. These ladies are warriors for women's health and rights. I'm reminded all the time of how much good they will do in the world. I'm hoping to stay along for the ride. 

• the Things That Matter podcast and for the people that Mitch, John and I meet along the way. (Look out for new episodes coming your way soon!)
• HC friends who won't let me off the hook when I forget to schedule Skype calls (and for unabashedly begging for me to come visit *cough, Dan, cough*).
• the ELCA Young Adult cohort who have encouraged me to think about the world in a new way and have been friends through the rough months of the past year. 
• Laura, whom makes me laugh out loud at least once per day. 

• the First Lutheran Church community. It's quite a blessing to be part of a Church body that passes the peace for longer than any other single part of the service and a group of people that is welcoming to literally everyone. 
• my doctors who have helped me to become healthy! 

• the ability to travel over the past year! So many things to see, so little time! 

What an incredible year it's been. This year wouldn't have been the same without you. Thanks for being there alongside me in the crazy, beautiful life. And thanks for embracing, encouraging, inspiring, supporting, challenging and believing in me along the way.

Crohn's and Colitis Awareness Week

Hooray! It's apparently Crohn's and Colitis Awareness Week yet again. Last year I wrote about the experience of being a patient with a chronic condition. Today in honor of #PurpleFriday, I'll show off my newly dyed hairs. 

And I'll also let you in on a short list of things not to say to people living with Crohn's or Colitis. Many of these things apply for other illnesses as well. We know you mean well when you say these things, but often it comes across poorly. A special thanks to some fellow chronies, Martha and Shannon, who helped me to come up with the list. 

1. "You look great! You've lost weight!"<---this one is my absolute least favorite thing to hear. The converse is true also after I've been taking steroids and quickly put on some lbs. after rage eating everything in the vicinity. Trust me, you do not want diet secrets from me. 
• Bottom line: don't comment on anyone's weight. Really, just don't do it. It's almost always a bad idea, but especially not so nice to do to someone with bowel issues. 
• Also a close runner up: "You're so lucky you can eat anything and stay thin." Malnourishment is a real concern in the middle of a flare up. Often force feeding high-calorie foods is required, although I would really rather not put anything into my body at all. 
2. "Is it okay for you to eat that?"/"I bet if you cut out dairy/gluten/meat/GMOs out of your diet you'd be fine." Each person's disease is different. And each day is different. There are certainly foods I stay away from (popcorn and seeds of any kind) but we all are our own experts on the disease and how we react to foods. 
3. "You don't look sick."/ "You seemed okay last week." This one is big. And not just for IBD sufferers. Crohn's and colitis are part of a group of diseases lovingly called "invisible illnesses" because you really can't tell from the outside what's going on. This includes multiple sclerosis, lupus, fibromyalgia, chronic fatigue syndrome, depression, migraines, Lyme disease, PCOS, endometriosis, etc. I'm really putting forth an effort here to appear normal. It's quite possible I spent the better part of my day just getting ready to go into public. Some days are harder than others though--fake it 'til you make it (and then pay for it later with fatigue). 
4. "My friend/cousin/random acquaintance was cured by essential oils/yoga/meditation/deep breathing/vitamins, you should do that."/"Just take Tums or Pepto!" I know you're just trying to help. But I promise you, I've tried everything. I swear to you, that no one enjoys swallowing handfuls of pills less than I do. And neither Tums nor Pepto is going to help me any. Also, as of right now, there's no cure. 
5. "Why are you so tired? You didn't do anything today."/"If you're tired just take a nap or drink some caffeine!" Oh the fatigue. The combination of medication, your own body trying to destroy itself, and the desire to just be normal really does add up some days. Although it sounds so ridiculous, there are days where I have to nap after taking a shower because I'm already exhausted. And then I feel guilty about being fatigued, so then I overdo it and thus the fatigue cycle continues. This was pretty much all of medical school on repeat. P.S. Adding caffeine is really the worst thing to do for gut stuff...it definitely doesn't make the problem any better. 
6. "It's just Crohn's. It's not like it's cancer and going to kill you." I've never personally had this one, but I can resonate with why it would be frustrating. And truthfully, when you're really sick there are moments when you wish it would just kill you already because living every day for the rest of your life with it sounds like the worst hell of all. But I also want to point out that the side effects of the medications and the disease are actually very real and can be life threatening. 

And here's a list of things to say or do instead.

• "You look healthier than the last time I saw you. Are you on the road to better health?" Make it not about size, but on health and well-being. Or even better...don't comment on outward appearances at all. Just tell us you're happy to see us!
• "I'd like to hang out. You choose the venue--we don't have to eat/go for coffee if you'd prefer not to." The disease is isolating enough as is. We need you to still stick around and invite us to things--even if we've missed the past 10 things because we were ill--we won't feel pressured, just reassured that you're still there for us and supporting us. 
• "I know you're in the middle of a flare, can I come over and do XYZ task for you (load the dishwasher, vacuum, go grocery shopping)." Make the offer specific and recognize that we may not have the energy to hang out for hours afterward, but that we sincerely do appreciate the help. 

I promise you that we are not expecting perfection, but even a little bit goes a long way. But most importantly, if it sounds like you're policing my body/food intake/bathroom experiences, please don't (unless I'm an infant, in which case please continue to do so). Just ask how you can better support me instead! 

World AIDS Day 2015

I celebrated this World AIDS Day (today!) by volunteering at Nebraska AIDS Project as the HIV test administrator. This evening we tested 11 individuals in just under 2 hours (which is actually quite a lot considering the test takes 20+ mins to run!). I feel like I've been doing this work a long time now--just over 10 years--and still so many have no idea how to protect themselves and 12.8% of 1.2 million people living with HIV in the U.S. don't know their status. HIV is not a death sentence anymore, but there are still so many disparities and stigmas associated with this disease. There are ~50,000 newly diagnosed cases each year in the United States.

Don't want to be one of them?

Know your status and know your facts. HIV can be transmitted via:

1. unprotected vaginal, anal, or oral sex with an infected person,
2. sharing needles for injection drugs, piercings or tattoos with an infected person (aka blood-to-blood contact--not so much of an issue in the U.S. anymore, but in the early days blood transfusions were an issue. Now all blood is screened by the Red Cross before it's put into the general blood supply),
3. from an infected mother to her baby during pregnancy, birth or breastfeeding

The bodily fluids to avoid are: blood, semen, vaginal fluid, and breast milk. Recently the CDC has also added rectal fluids to the list too!

Education is really the best way to reduce the number of new cases. Know your status. Know your partner's status. Encourage your friends to get tested as well. Use protection during sexual acts. Don't share injection drug works. Learn about HIV transmission, safe and consensual sexual practices, and maybe even what other STDs are prominent in your area and how to protect yourself. You all know that I am a huge proponent for comprehensive sexuality education in schools. You should be too. These classes talk about much more than sex--partner negotiation, consent, healthy vs. unhealthy relationships, etc. Our young people aged 13-24 compromise only 16% of the U.S. population, but account for 26% of all new HIV infections in 2010 (the most recent data available).

But most importantly we need to have some serious conversations about stigma and discrimination. There are many people that I know and love living (happy and normal!) lives with HIV, but not everyone who is HIV+ has had such a positive response by their community. There are some key populations that are especially stigmatized and discriminated against--men who have sex with men, transgender women, black women, sex workers, IV drug users, trafficking victims, migrants, Hispanic women and others). We cannot and should not continue treating those who are positive as second class citizens. Love and respect your neighbors, folks. Reconcile old grievances and move forward together.

Want to get tested? Find a location near you!

Want to learn more about HIV? Visit the CDC website.