Winter, We Meet Again!

Ooooh blogging!  Remember that?   The last entry I wrote was September 6.  I had probably had like 2 classes?  Haha. Everything was perfect!

Well, ok I won’t be such a cynic, everything is going well still, and guess what?  SPRING is (maybe) really here!  We survived our first winter in Boston.

Not without struggles though, but I’ll stick with the abbreviated version… cause. Well, once again it has been 6 months.  Ouch.  Although- after April, I will have broken my 8-month curse of living anywhere away from home!

 

Let’s start with the good! 
(For some reason I feel like bullets make things more readable, even if there are massive paragraphs under them)

• ·      Owen got a job!!!  He currently is an AmeriCorps Vista with a great organization called YouthBuild.  They just had a conference in DC that he pretty much was a rock star at, he works with wonderful people, and it’s so great to see him shine in his own mission of world changing for young people with and without disabilities.
• ·      I survived my first semester at BU.  I got all A’s and B’s in my classes, except for one…which was unfortunate because I did really love the content, but it was a time of figuring out what my learning style really is- and it was not this apparently. BUT I DON’T HAVE TO TAKE EPIDEMIOLOGY AGAIN!
• ·      We have friends!  We have had some pretty awesome outings with some BU folks, but also the people in our building have formed sort of a group that has outings and celebrations when appropriate, and they take good care of us.  I can’t wait to start celebrating on the roof deck once again.
• ·      There were crazy, wonderful, family filled holidays on both this side and the West Side!  Yes. The Erquiagas and Cyrs broke bread together for Thanksgiving, and Carl and Lisa (Owen’s parents) got to see Boston and our abode now that it isn’t just piles of boxes!
• 
  
• ·      Owen and I are still very much in love.  Probably even more actually- after the following paragraphs, you’ll see why this is important.  We have lovely traditions of ordering sushi takeout, watching far too many episodes of 30 Rock and Family Guy before bed, and just being together in our cluttered 501 square feet.

So now the bad and the ugly…

After the semester ended, things sort of crashed and burned for a while.  I guess I had been going, going, going, as I tend to do, trying to be this superhuman being I strive to be.  I don’t even really remember the end of the semester that much, aside from constantly feeling like my body was in fight or flight when I would be trying to do 27 things at once in the student lounge but really never getting too much done. 

Then, after my last final, and finding out I got my required B+ in Epi, I hauled bags to South Station to take a bus to Maine to begin our holiday whirlwind.

After Christmas numero Uno, we were off to NV, and I started realizing I just didn’t feel good.   I made up all sorts of excuses.  It’s probably a virus, my body doesn’t know what it’s like to relax, I was too busy to notice, etc. etc.

I had a couple of low grade fevers, some weird stomach issues and headaches, but mostly I just felt weak, and could hear my heart beat in my ears, and it was making me crazy. This was around the time when everyone was sick and the flu was at epidemic status, so I just sort of wrote it off.

The last day I was there, I bit the bullet and decided I needed to go to a clinic in Fallon, NV.  I had a strep test, which came back positive; I worked out some IV antibiotics and prepared for the 9-hour travel day home.  The night before our flight, we were going to be staying at a hotel casino in Reno, so we could actually sleep a bit before our flight.  Let me tell you, being sick in one thing, but being sick when you are in one of your favorite travel destinations and barely being able to get back from the bathroom on your own because the room is spinning totally SUCKS.  I did manage to choke down a margarita, and throw a few dollars into a slot machine…Yolo.

Fast forward back to Boston, after 3 days of IV antibiotics, I was actually feeling worse, and beginning to believe this was more than strep throat.  I sent Owen to work and lay in bed wondering what I should do.  Should I go “home” to Maine?  Should I go to the ER?  At this point, I could barely focus my eyes and realized my hands and face were a little puffy.  The room was spinning and our apartment was actually shaking due to the construction that is still happening next door to us.

I finally bit the bullet and called Pastor Jordan, BFF Extraordinaire and said I needed to go to the hospital.  Very long story short, this resulted in 27 hours in the ER, 2 blood transfusions, and a 10-day stay at Mass General Hospital.  Not quite what I was expecting when I went in, but I guess it is true that you gotta trust your gut.  Whatever virus I had, knocked out my bone marrow and it decided to simply stop producing blood cells!  Thanks a lot marrow.  My blood counts were scary low and the dr’s couldn’t believe I didn’t pass out somewhere along the way.

To this day, the doctors don’t know what made this happen, or what the virus was. Everyone was actually pretty scared, more so than they let on at the time it was happening.

I look at the whole thing from 2 perspectives.  Overall, it totally sucked, and was not how I planned on spending the rest of my much needed vacation, but it also got my foot in the door (well, I kicked that door wide open) with hematology in Boston, and nudged along my “health care transition” in this new city (for more of my “lessons learned” listen to the latest episode of Got Transition Radio! http://www.gottransition.org/about-us-news/50 )

Owen did not leave my side, and we got through another huge milestone for us.  The first medical crisis and inpatient hospital stay.  I had always played out these various scenarios in my head, not knowing if we would be able to stay with each other, or handle all the emotions that come with these adventures we all know too well.  He slept by me in the ER while I got someone else’s blood pumped into my veins.  He held my hand while I bawled, and yelled obscenities while dr’s drilled a medical corkscrew into my hipbone for a bone marrow biopsy.  He held my portable EKG machine and straightened tubes while I tried to climb on the enormous toilet just to go pee. He stayed by me as I went 4 days without showering and told me I smelled good when I finally did.  He even posted on our Facebook page, documenting the "other side" of our disability rock star life.

We have hit those milestones.  Some people never experience such things even in marriage, and we are not yet at 2 years, and we triumphed through it all. 

I think of all the things we learned during winter in Boston, the biggest was the value of each other, and each moment.   After my hospital stay, I worked with my advisor and amazing MCH professors at BU (the admissions department sent me flowers… I continue to be obsessed with my school) and became a part time student.  I am no longer flitting around not knowing which end is up or what text I am reading. I am actually really enjoying having time to reflect on the work I am doing, and be a bit of a housewife.  It’s nice to be able to make dinner, feel like I reach the point of being “done” my homework and be able to RELAX guilt free (what is that?)  Balance is beautiful, and I want to be able to treasure this journey for what it is- a journey, not just have a whirlwind experience in which I achieve an MPH, burn out and broken relationships.  No job is worth that.

There are a lot of changes coming up for me professionally, and there will be more on that later, but for now, I am happy again.  Winter was rough, I am not a fan, but we made it, better, wiser, stronger, and I am ready for SPRING in this new city… now that we know how to use the T!

As I sat in the hospital, early on in my admission two weeks ago, I was talking to one of my friends, who referenced something, as we discussed my situation.
She said that she “got it,” as she was one of the rare breed known as a “CSHN diva.” I have met a few, and perhaps I will start a sorority. Wouldn’t that be fun? Just call me Elle Woods (Legally Blonde 2 is my inspiration for life…)
They are people who are consumers of “the system,” know the drill and still maintain their proper level of fabulosity. Granted, it is not easy to do.
Here are some tips…
Perhaps this should just grow into a book…. It is a bit lengthy. Being fabulous is not easy remember.

(Of course, let me offer a disclaimer that this is not actually sage health advice, just a witty blog- please listen to your doctors before me)

CSHN Diva’s guide to being in the hospital:

1. Be polite.
First and foremost. As my fellow diva, and good friend Kristin Chenoweth explains, part of being a diva is being nice. This can be difficult when you feel terrible, and would like to be anywhere but inpatient, but believe it or not, people do have your best interests at heart, and are just doing their jobs. As miserable as I can be, I always try to make light of the obnoxious questions that get asked hundreds of times. Keeping your sense of humor surprises people and let’s them know you’re on board with what they’re trying to do, which is ultimately get you better. I also believe in thanking everybody, from the people who clean your room to the people who draw your blood (even if it takes them 6 tries after you ask them “are you good at what you do”) Little things make a big difference, and I even learned this stay that people were arguing over who got to be my night nurse (and here I was worried about being the high maintenance bitch people avoided)

2. It’s ok to speak up:
I have been doing this whole “hospital patient” thing longer than most of my doctors have been practicing. I know my body, and I know my symptoms. Basically when I go into the ER, I know what I need, and I know what needs to be done. I know what tests are a waste of time and money, and what could possibly mean something else. Trust your gut. Don’t be afraid to mention something that you think might be up, or refuse something that you know is irrelevant (again… if your doctor really insists, it might be worth it… I’m not giving medical advice here) you can make your ER process, or hospital stay a lot more productive if you are able to guide people through what has or has not worked for you, and reminding them that you have things to do and people to see can actually have an impact versus laying around waiting for them to make the next move. Things in the ER tend to move about as fast as a granny marathon...

3. Wardrobe:
This comes directly from a texting conversation early on, between divas.

A:“Tell me you are wearing adorable pj’s and not one of those horrible hospital gowns”
M: “Clearly.”

Not only does this prevent a major fashion faux pas, but it is a crucial step in maintaining one’s dignity and showing people who is in charge of your body. Nothing says “I don’t care” like a not properly sized sheet with sleeves and no back. Please. Nobody wants to see that, and I guarantee it is not going to help if you get chilly. Conveniently for me (or not so) I had been dressed for flying, so was already equipped with velour sweats and a t-shirt, and in my blind rage of packing, brought more sweats, and t-shirts from various conferences and musicals. It may not be a fashion show, but at least an opportunity to show people that you are still you. Fuzzy socks and sweatshirts are a must as well, you never know when they might be out of "footie slippers" or warm blankets... and hospital temperatures and fevers can be very unpredictable (much like airplanes)

4. Hygiene:
Be the girl that smells good. Trust me, it surprises people, and again shows you respect yourself. I am a huge believer in feeling good has a lot to do with looking good (or at least smelling good).

Although it can be a huge ordeal, do not go more than 3 day with at least some sort of sponge bath (or shower if possible). It might seem like a huge process, but I guarantee it will make you feel better, if only for a little while. Being sick is no excuse to get dread locks either. If you are seriously in a bad way, might I suggest braids as an elegant easy style that is perfect for miserable writhing in bed without too much damage and tangling.

Another rule I stand by all the time, whether it be on an airplane or just in winter weather. Moisturize, moisturize, moisturize. Hospital air is just as atrocious as airplane air, and thus is torture for most skin. Bring your own lotion and apply frequently. Those little hospital slipper socks are fabulous to slip on after liberally moisturizing your feet (bonus if you talk someone into giving you an inpatient pedicure too) and letting it soak in while you lie about.

5. Room service it is not.
Oh the food. Granted, let me preface this with just how disenchanting it is to go from truffle mac and cheese and Marriott breakfast menus to a hospital menu that now says “room service.”

I just about cried when I saw the universe was mocking me so (and the fact that I knew my colleagues were going to be having sushi and receptions all week while I had orange sherbet and grilled cheese….)

One thing I have realized when I’m sick, is that my appetite is as up and down as my temperature. I either want nothing at all, or get one craving for something that won’t go away until I have it (usually something that is not on the “room service” menu). On one horrible hospital experience, my fellow diva and I actually ordered Chinese takeout and had it delivered directly to my room.

Other than that, I know the people that will visit that understand what I’m dealing with and offer to bring me lattes, or Thai food when I’m absolutely craving it. Don’t be afraid to ask what for you want. People will want you to “eat and get your strength back.” If you don’t have someone to go fetch your dietary requests, don’t be afraid to special order from the “room service” menu. For example… hospital scrambled eggs are far better with cheese though it’s not listed there. Always ask. The worst thing that can happen is they say no, you don’t eat and end up losing a couple pounds. Could be worse, right?

6. Connectivity is a right not a privilege
One of my trademarks is that I can be having blood drawn, or an IV in one arm, and the other will always have my blackberry.

Within the first five minutes of being admitted (and stabilized, obviously if I’m not feeling well I don’t care…) I know what the wifi availability is, or where I have to go to get it (I used to have to go to a crowded library with a username and password on public computer…tragic).

True divas cannot just go off the grid without some sort of update to let people know what’s going on (more on this soon) or to at least keep up with the celebrity gossip or what is going on in the outside world so they don’t feel completely hidden away, a la Repunzel sans her prince charming. Sometimes things simply must be done. I have e-mailed papers from the nurse’s station when I was in college, and most recently virtually streamed the day of speakers I was missing in DC then participated virtually in a strategic planning meeting via texting as well.

Granted, I’m a bit of a work-a-holic and have been resting since then, but true divas know when it’s important to have a presence, and when the statement to make is to be missed.

7. Have secrets:
This is sort of a newer thing I realized more this time, as my mother and I were having disputes of who was telling what information. Now that social media is a huge deal (take it or leave it, it’s there) it’s different than when I had a few select people I would keep informed of my health and the different stages of being sick (hey guys I’m in the ER, I’ll keep you posted, vs. “Ok, not looking good, probably going to have surgery, good thoughts please.” )

But now…when I post an “update” it goes to 600 people. Or if someone in my family posts an update it goes to another several hundred (who may or may not also be seeing mine). To me… information about my health is an earned privilege. I don’t believe in divulging my entire cyber-audience with details of what my blood count was or what my fever was.

I see it as the equivalent of a first date. You don’t go on a first date and say, “Hi, I’m Mal, I’m a little high maintenance and there is a chance I could go into the hospital with a severe infection, want to share an appetizer?” Brutal to say, sometimes the scary truth is a good way to push people away. Not everyone can handle it. Usually after the initial blast that things are not well and there has been a change of plans, I slowly get it narrowed down to the VIP’s who want to be in it for the long haul, and continue to keep them posted (these are usually the people I know will be dropping by with frequent lattes and new issues of magazines, knowing just what I need without me asking).
Otherwise my updates are vague and minimally dramatic (except when I become terribly bored and depressed and the walls are closing in). I find this is the best way, for several reasons, one of which, I have seen what people do when they do not have all the facts. One time I was in the hospital, I had told one of my friends that I had an infection, only to find out that it got turned into that I had AIDS. As much as I love RENT…. That is not the case. The less information that is out there, the less that can be misconstrued, and the less hysteria there is among my 600 “friends,” and the more I can actually rest and do my “get better thing.” This is only my process of course (and as my fellow diva Paris says, “Every heiress has to stay somewhat mysterious… if you don’t have secrets, make people think you do.” Being an open book is not cute). Some of you may love drama, in which case make things sound as scary as possible, but be prepared to diffuse a lot of rumor bombs and deal with people who treat you like creepy, catchy glass after.

8. Be selfish:
This may sound like it’s counteracting #1 (be polite) but you can do both! What I mean by this is- Let yourself be sick. Take the time to heal, and properly recover in style. If you don’t want people to visit you, it’s ok to say that. People usually feel like they don’t know what to do when you’re in the hospital, so if it means waiting for you to be out and taking you for coffee when you’ve got nothing to do, tell them that. If you don’t feel up to entertaining people in your hospital room and would rather watch “What Not to Wear” through half opened unshadowed eyelids, SAY THAT.

Use your silly little nurse call bell if you need help with something, that’s what it’s there for. You’re not being annoying… you’re SICK.

This also applies to when you are home, but still not feeling up to par. If you try to throw yourself back into your fantastic life at the pace you had before without actually letting your body recover, you will crash and burn, and that is not fabulous. Rest, sleep in, drink tea, watch lots of reality television, take hot showers and sleep after. Email all the people you answer to, and explain you are still recovering so you can skip things, guilt free.

You’ll know when you are ready to start taking things on again because you will begin getting bored. Divas can only be down for so long and friend and family online sales only last for so many weeks…
Give yourself the proper pampering, get a good night’s sleep, and perhaps a new NARS lipgloss (or three) and begin getting back into the swing of things. Before you know it, you will be back on a plane, overcommitted, wishing for a real vacation.

And best of luck. Just know, CSHN divas, you are not alone, and all the other sisters support you in your quest for staying well and being fabulous.
xoxo

Post hospital Update:

So here I am, about two weeks later, on my road back to fabulous, which is not actually as easy as it sounds.

Surely, it has been a bit enjoyable when I am feeling fairly decent to lounge in bed with my cat, watching the entire series of Cashmere Mafia on Netflix instant view (why, oh why do they cancel every show I end up loving!?!? What ever happened!?!?) but it has simply grown old feeling dizzy and nauseous and not being able to flit around as I had gotten accustomed to doing as I was on such a roll being a work-a-holic. And I think the hardest part is that it gets lonely.
There is a big misconception that once one is out of the hospital that everything is “better,” and I’m simply up and about again. Quite contrary. Most people still would’ve been inpatient for the duration of their IV antibiotics, but because we are good at what we do, they let me go home, it’s not because I’m “better.” So the novelty wears off for most people.Plus, not only did I miss my epic week in DC, but I missed Halloween, which is literally the first time in my entire life that this has happened. Never mind the fact I don't even remember the last time I went so long without leaving the house.

Finally, yesterday, I put real clothes on for the first time in 2 weeks, and broke out of the house to vote (gah, more on that when I have regained some emotional strength) and celebrate Red Cup day, showing my Starbucks crew that I am indeed still alive...
Thus, before I launch into the part 2 of this blog, which will be posted soon, I’d like to give shout outs to the people who stuck with me even though my reports didn’t change beyond I feel crappy, and “I’m sick of being miserable.”

Allie (who the following blog is mostly dedicated to)
Shannon- for fighting over who’s sicker, everyone I work with/for for making sure I actually could rest without feeling guilty for the first time like… ever.

Ashleigh- for encouraging my shopaholic and being my on call Sephora consultant.
My parents of course- for listening to me walk around the house groaning and whining for no particular reason without once telling me to shut up and get over it (and for giving me my big girl bed back)
Maisy- for sharing in my stir crazy madness and eating too much candy with me, while watching Halloweentown and Hocus Pocus every time it was on.

J.B. (not Justin Bieber)- for being my on the scene reporter of restoring sanity, and reminding me what I need to hurry up and get back to ☺
and

Taylor Swift for providing a soundtrack for my week of ultimate diva self pity fest ….

And now here is to another progressive week of rest and "getting better," so that I can be back to what I do, and take off for Houston next week! Stay tuned for the follow up blog from my epic hospital stay....

I went to meet with the people I'm going to be working with/for. It was incredible. First off, I had to meet with the superintendent of the Maranacook school district, since I'll be on their payroll, and it started off sort of intimidating since I've NEVER had anything of a job interview before, but it was comforting to know I already had the job, and it was basically just to prove I knew what I was doing and would be an asset to the team.
He began professional, and sort of edgy, and he asked me "So...what do you know about the Maine Support Network?"
And I proceeded to tell him, "Well, I've been involved with them for about 7 years," and he was immediately impressed and relaxed. We chatted for about 20 minutes and it ended with us talking about camp (He asked, "so do you do any public speaking...") And he closed with. "WELL. you really made my day!"
which clearly made MY day. I felt really really good about it, and the fact that he was psyched to have me on board!

Then I rode over to the MSN office with a lovely lady named Coleen, and she was wearing lime green crocs, which was only ok cause it showed me these people were super down to Earth, but when we got to the "office" I nearly died.
First of all, it's basically just an adorable house and it just happens to look like I decorated the place. Never have I walked in somewhere and had such an "oh my god, I belong here!" reaction. The first thing I saw was a Vera Bradley towel, about which I gushed, and come to find out, one of the girls' (who is absolutely lovely!) family owns the CALICO PATCH IN FARMINGTON!!! So I totally know them!
Coleen asked if I liked coconut coffee (favorite!) and she made me some, then we went to sit in another office that had THE SAME exact PURPLE carpeting as my room, as well as the purple desk chair I just retired!
A bit later, I met with my supervisor, and she asked me questions about my working/learning style, and we just chatted. Her signature colors are pink, purple (um remember my room at school anyone?) and zebra! She's amazing. She told me all sorts of things I need to get for work (they're going to give me a work expenses credit card!) and one of them is a bluetooth headset and she already had a pink one, as well as ringtones for all her coworkers. We're SO on the same page! I can't wait to start. truly.

After being pumped from all of that, I called Colin and we went to Starbucks. Sometimes we go out and it's like we both have so much that is unsaid, and it's strained and weird, but this was one of those times that was just wonderful, where we're just 100% open and comfortable, and we reminisced about old dramas, theater drama, and laughed way too hard at stuff that wasn't funny. It was good.

When I got home I realized I ached all over and didn't feel that great. People were going to reconvene that evening at Brandon's but I layed down for a couple hours, and woke up feeling warm. I had a low grade fever and I decided I had better pass and rest up since Colin's party was the next day.
I went to bed early and felt fine the next day....weird.
Mom and I went to Portland for a dr's appointment and came home to get ready for the soiree. Which was absolutely FABULOUS.
Jess was there, and all my boys of summer.
It was seriously such a great time. My parents went too and we all had an amazing time. I love all of those people.


My rents left a little early, and the rest of us snuggled in the living room warming up and telling crazy stories of our ends of college. It was so perfect.
I got home at like 11, uploaded my pictures, and went to bed.
Before long, I felt muscle twinges start in my legs, and I got cold. I snuggled deeper under the blankets, trying to will what I knew was coming, away. but it didn't work. My teeth began chattering and my body shook to the point where all my muscles were contracting. I tried to straighten my legs or curl up into fetal position, but I couldn't stop the pain of my hip joints shaking and grinding together. It hurt. I tried for a few minutes more to get the feeling to go away, but it was more than being cold, and I knew it.
I reached for my treo above my head and dialed my dad's cell phone that I knew was by his bed.
Soon my parents came down and got me a heating pad and eventually the chills subsided and I was able to fall asleep. But we all knew something was going on, and my dad stayed by my bed for at least an hour (I think he actually kept checking to see if I was breathing. It was scary shit)

In the morning, mom and I went to the lab to get blood cultures because usually that means a line infection, although, I usually would get a high fever during or after the chills and there was none, so we were a bit confused. It was a task trying to get blood, because for some reason my line wouldn't draw and my veins just suck. We went to Denny's to escape everything and eat really crappy food that was SO GOOD. I am now in love with their hash browns!
The day went on, and again I went to bed (after watching Breakfast at Tiffany's- it IS a good movie)

Saturday we were supposed to go to CT to get Maisy from camp, and for my cousin's grad party but because we didn't have the lab results back yet and I still wasn't feeling up to par, we decided it would really be a good idea to just stay home (I have good instincts by now and sometimes you need to go with your gut) So that day, dad went, and mom and I stayed home and did house things.
That night, after an amazing meal of stuffing myself with all the chinese food I could eat, I got hooked up and as I was surfing myspace I felt my legs get twingey. Nooooo.....
Sure enough, in the time it took me to put up an angry away message and get in bed the chills had fully errupted again. I tried to relax, but we decided we had to do something, so we quickly tapered my TPN and unhooked me and by then, I was able to relax but my hips and muscles still hurt to the point where I could barely walk.
From 11-2 that night, mom and I sat in the ER. We read all the magazines in the place, ate sherbet and I had more blood cultures and a chest X-ray before we went home. By this point we just wanted answers.

We got a phone call the next day that the second set of cultures had come back positive and we needed to go back to the hospital. Finally. At least we knew!
I got admitted and sent upstairs (after the triage guy thought my name was Nancy...psh...and I lied about my husband Tom...come on now)
I got hooked up to fluid, since I was also severely dehydrated from not getting TPN and my bloodwork was all off and some antibiotics.
Colin is the best BFF I could ever have, and since we were supposed to hang out that day before he went back to CT, as soon as I was settled in he came bearing iced lattes.

I was in the hospital for 2 days before we got back my labs got back and we had been told what antibiotics would work for the infection. I watched way too much MTV and actually got a good portion of the way through Harry Potter and the Order of the Phoenix, so I'll be set when the movie comes out! But I have concluded, the worst thing in the world is to be in the hospital when you feel OK!!!!! Even going to the cafe with Starbucks was rained on since my vintage IV pump had a battery life of .2 seconds!

BUT now I'm home on IV antibiotics once again, and hopefully that will take care of things. I start work on Monday! Excited.

So for now I am going to drink tea and read more HP! There's a week in the life... see what happens when I go like A DAY without writing!?