- I like the taste of orange juice, but I hate the pulp.
- I like how Facebook keeps me in touch with my family no matter where we are, but I hate how some people use it like a personal diary and puts stuff on there that they’d be better off discussing with their psychiatrist.
- I like Golden Girls reruns, but I hate the spinoff named Golden Palace because without Bea Arthur as Dorothy that show stunk very badly.
- I like the show Monk, but I hated the ending because it wrapped everything up a little too picturesque.
- I I like blogging on WordPress, but I hated switching everything over from Blogger.
- I like my job, but I hate the feast or famine part of it.
- I like NCIS, but I hate NCIS: Los Angeles.
- I like my wedding rings, but I hate how they’re too big now and getting them re-sized would involve losing most of the stones.
- I like (okay, love) reading in bed before going to sleep, but I hate falling asleep while still reading and not being able to move my already slightly defective neck without it hurting like hell.
It’s a double post day.
I took this picture (or rather, I had my mom take this picture) because some VACTERL adults were sharing photos of theirs and I wanted to participate. I love seeing all the different hands – some missing just a thumb like me, some missing multiple fingers or arm bones, like my husband. Each affected hand I saw was different in some way – but each one also came with a story. I’m a writer and a storyteller at heart, so I love stories and the history of things…
This is my story.
I thought I’d share this with the official explanation, not fictitious the one I told my friend Katie when we were kids: I was born with a piece of skin there that would have been a thumb, but it had no bone or cartilage (my radial bone – the thumb bone – stops at a lump of bone at my wrist) and so it was removed. For those VACTERL people wondering, I didn’t have any type of poli surgery. For the people who Google everything, it’s called “radial dysplasia.”
This has not affected my life negatively, I don’t notice it because this is all I know. Most people who notice are totally awesome about it – my favorite was one friend a couple months ago exclaiming “I’ll be damned!” or then there was the college professor who thought I flipped her off when I pointed to something and she felt awful. There are people who knew me for twenty years before they noticed; there were people who have known me for five minutes and noticed right away. I’ve noticed those who notice right away typically have a family or close friend with a similar physical abnormality or they have one themselves.
I will say that yes, there are some people who are total jackasses, for lack of a better word, about my hand and for the life of me, I can’t understand why. A kid once called me a “four fingered f-ing freak”. To be fair, what I called him in retaliation to that was probably just as vulgar,but I was raised to stand up for myself, so there’s that.
The worst are the people who look at my with pity. Dude! Do. Not. Pity. Me. I’m not exactly bad-off here. I have nine fingers that work just fine and supposedly I’d be left handed regardless of my radial dysfunction. I can drive without steering wheel accommodation, I’ve crocheted for 20 years, I can hold a book to read just fine, I can type 100+ wpm and I’m one hell of a texter.
At the end of the day, this is just something cool about me (and yes, damn it, I call it “cool” because I believe it is), not something that defines me. I’m not, nor have I ever been, that girl/woman with nine fingers. I’m an individual who just happens to have nine fingers. Big difference.
Today’s prompt in the writing challenge are “my worst habits”.
Well… I don’t smoke, can’t drink anymore and one of my biggest thrills is watching Big Bang Theory while eating Taco Bell. I live a relatively quiet life when I’m not sick (hell, and even when I am sick).
I think my main worse habits are both overreacting and under-reacting. Such a contradiction, but that’s just me. I live in a life of contradictions.
I overreact when something relatively minor happens (like a small disagreement with my husband) and I blow up royally. Screaming, cussing, etc… However, when something huge happens (like a huge fight between us), instead of being mean and screaming and yelling, I just shut down. Basically, what should make me chew my husband out just makes me go silent and the things that I should let roll off my back are what makes me go crazy on him.
Over the years, I have gotten much better at this, but it’s just an ongoing task to watch myself.
Okay, so I’m participating in the April blog challenge for a group I’m in on Facebook. Unlike the attempt of doing this in March, I decided to write several blogposts at once and schedule them so I won’t get behind.
First blog subject: 20 things about me. I whined earlier to my friend LeAnn (who has an awesome blog here) that I didn’t think I had twenty interesting things about me to post. Her response was that I absolutely do… So I’m going to try. My goal? Trying to post 20 typically rarely known facts about me. We’ll see if I succeed.
- People think it’s “really romantic” that I only take off my wedding rings for surgeries and showers. Romance isn’t really the real reason- it might be that at some point last fall I misplaced it for an extended amount of time and now I’m scared to let it out of my sight.
- My husband’s name is Mathies (Ma – teace) and I love it when medical people are verifying my contact information and don’t know how to say his name.
- When I’m getting an abdominal ultrasound, I may or may not warn the ultrasound tech that I am vastly abnormal in that area and that I’m missing some organs and have been rearranged in there, all depending on if the tech is nice to me. If I give one tiny bit of information to guide you and they get miffed or condescending about it, I won’t tell them any more and let them figure it out on their own.
- I’ve lost two stepfathers to cancer in seven years. There needs to be a cure.
- I am amazed how many people are offended by my blog’s title. I don’t understand this. I am married to a guy from a country that is pretty socialist, so it’s not like I made this up because it sounded cute. Plus, if it doesn’t offend my husband, it sure as hell shouldn’t offend anyone else. He loves it.
- I have four stepbrothers, technically four stepsisters and a half sister. As of two weeks ago, I have officially met them all. Some of them I love to death and some of them I find are just interesting studies of human behavior.
- I couldn’t get past the first 50 pages of Twilight and I thought Bella needed a Gibbs’ slap (if you don’t know what that is, look it up.)
- I have to sleep with a window open or the fan above my bed on, even when we lived in Wyoming and the temperature outside was below 0F. My husband hates it most of the time, but he puts up with it.
- I despise summer and sometimes I wish we could move to Alaska.
- I don’t understand Danish spelling! My husband is from there and it’s so confusing that over there it’s “Kobenhavn, Danmark” but over here it’s “Copenhagen, Denmark.” Why is it different on two continents?! When I mail things over there I never know what to write on the package for the address.
- I hate, but also find amusing, how some people are very interested (read: nosy) about if and when Mathies and I will reproduce. Dear Lord, people. Since when is that anyone’s business but ours?
- I’m on level 65 of Candy Crush (an iPhone / Facebook game) and I swear in the name of everything good and holy I can’t get past it. So. Frustrated.
- I didn’t get to vote in the last election because I was in the ER snowed on dilaudid after a godawful pancreatic attack.
- I own a Katniss Barbie. Don’t judge.
- I read nearly everywhere, including but not limited to: Cardinal baseball games, riding in the car for anything over a 5 minute drive, before I go to bed, before I get out of bed (unless I have to pee, then I get up and go and then crawl back into bed and pick up my book), while watching TV, on planes, on trains and on busses. I’m ashamed to say how many times I missed my stations in Denmark when I was devouring a book.
- I cried the day I had to cut my hair because the malnutrition made my long locks fall out in chunks.
- I have a reputation of not taking crap from anyone and I’m very proud of it.
- Grammar and spelling errors, especially on Facebook, make me physically cringe.
- I nearly always have either music playing or a TV on and I frequently have both going at once. This is probably because I grew up in variety of hospitals and those places are never quiet, so I’m uncomfortable in dead silence and I have to have some sort of noise going on.
- I made my husband drive more than two hours so we could get to a movie theater that was showing “The Help.” I am such a fan of the book and I wanted to see the movie so badly that when I found out it’s original release date was going to be my actual wedding day, I started asking people if they wanted to go after the dinner. It turns out that the release date was pushed up two days, but because I was so busy with that whole “planning a wedding” thing I didn’t get to see it until a couple weeks later and by then, we had moved clear across the country and the only place showing the move was 2 hours or so away. But really, I would have totally gone to the late show after the dinner. Damn good movie.
I can’t believe I came up with 20 facts!
Tomorrow come back to read about my worst habits…
This is how far away from me my husband is at the moment. He’s in Denmark, getting his Master’s; I’m in Missouri bouncing between the hospital and my mom’s house while trying to work.
I’m writing this to both answer frequently asked questions and set the record straight about our living arrangements. Some people, I have learned, just assume things about our situation that are not true but they don’t want to ask me. On the other hand, a few people who have asked me asked questions that even I wasn’t entirely comfortable with and for me to not be comfortable it has to be one hell of a personal question.
So here what’s going on:
The plan was for us to go to his homeland together so he could take advantage of the free education they offer their citizens. Then I got sick and everything went to hell.
He’s been gone since late September. His thesis is due mid to late May, so he will be coming back to the States sometime after that. Depending on a few factors, mostly my health, we will be moving somewhere sometime this summer.
(And no, I don’t know where. It will be where he finds a job, since my job can go anywhere.)
People keep telling me how hard this must be for us, how well I’m handling it and, my favorite, how unselfish I am that I “let him leave.” I didn’t let him leave, I’m not his keeper or warden and he’s not mine. To us, married doesn’t mean joined at the hip. We made a joint decision that this was the best option for our current situation and our future plans.
Yes, it’s been hard being so far apart, especially with the crapstorm from this past month or so.
Do we like it? Nope.
Is it worth it? Absolutely without a doubt YES.
This is not our first time living on two different continents, but its the first time really since we’ve been married (the first time was a few weeks this summer but it wasn’t long enough for me to consider it an actual “separation”.) Over the years of our dating and engagement, we were frequently apart and we made it work. Yep, there were times that we both wanted to throw in the towel, but we stuck it out because, at the end of the day, we love each other too much to let each other go.
Corny? Hell yes. But true.
I love him because he makes me laugh.
He made an effort to get to know my friends and there are some he talks more than I do. The one he’s closest to is my friend Ashley, his fellow extreme Red Sox enthusiast.
This was at our engagement party in the summer of 2010. The guy who is marked out is Ashley’s ex. I don’t have alot to say about him, but I will say guys like him remind me why I love my husband.
This is from the brunch we had two days after our wedding.
He also is good and friendly with my family, which means alot to me because my family is both complicated and rather extended. He’s made an effort to get to know as many as he can, although he did give up trying to learn my family tree when he realized all in all, there’s like ten people I consider my grandparents and I biologically only have two first cousins, but I say I have about 40 or so because I count my step and common law relatives as family just as much as I do my blood relatives. I drew him a family tree once. You should have seen his face, it was priceless.
This one is from our joint bachelor-bachelorette party a week before the wedding with some family and friends. It was such a fun night and we ended up at Denny’s… I think we’ll do another night like this sometime this summer.
He’s one of the most supportive people in my life when it comes to what I do for a living. When I told him I decided I wasn’t going to write for newspapers as a staff member anymore and that I would be going the freelance-contracting route (which is one of those feast or famine kind of jobs where I can make zilch one month but have a windfall next month), he didn’t blink an eye. He asked thoughtful questions, let me bounce ideas off of him and tells me he’s proud of me often. Even though we will have to move wherever he gets a job, he’s insistent that wherever we end up has plenty of work (professional memberships and networking opportunities, mostly) for me. He wants me to succeed just as much as I want him to.
Because he has VACTERL as well, he can relate to most of what I go through in regards to everything. When I was so sick last year, he slept by my bedside when he was able, plus he updated my family and a few friends multiple times a day. I didn’t even have to ask – he just did it. He accepts my limitations and loves me in spite of them; things that I always thought would be a dealbreaker with most guys doesn’t bother him at all.
We’re very excited for our impending reunion, but we are handling being apart quite well because we know this is the absolute best things for us and the payoff is worth the sacrifices.
Plus, living apart means he can eat all the chocolate and shellfish he wants (I hate the smell of chocolate and I am allergic to shellfish, so when he eats either one I won’t even kiss him) and I can sleep in the middle of the bed with the tv on (which he hates). Okay, so there might be a silver lining in this after all.
Dear Medical Professionals,
Last year I spent 320 days hospitalized in four different states and this year I’ve spent it half hospitalized in one place. I grew up as a frequent patient, so it’s not like the past 14 months have sent me into a medical culture shock even though I’ve spent ten more times as much time hospitalized in the past year or so than I have ever had in any given year since I was a toddler.
With that said, there’s some tips that I would like to give medical professionals. This is for doctors, physicians assistants, nurses, nurse aides/CNA/techs and caseworkers.
- I know what I’m talking about. No, I didn’t go to medical school or nursing school, but I had the most comprehensive medical education you can get – trial by fire as a patient for 26.5 years. That means I know what the hell I’m saying 99.9% of the time. The other .1% is when I’m too sick/medicated to talk.
- If I think a lab result is off, I get more worried about the fact YOU aren’t worried than the actual lab value itself.
- On a similar note, some things are always going to be off. Learn what they are.
- I have Vulcan hearing. I can hear you talking about me when you’re right outside my door and I have no problem reporting you to a supervisor. No problem at all.
- Read the damn chart! This is my biggest pet peeve when it comes to anything medical related. The covering doctor last weekend thought I was in here for a simple UTI – which it would be, if I didn’t have the extensive renal history that I have. A “simple” infection isn’t really “simple” and you can’t really throw a five day course of low dose Bactrim.
- When I say I’m allergic to latex, that means please don’t bring me any latex products, including but not limited to catheters. That was a very close call Thursday.
- Last but not least, most of the time what something means, I’m actually testing you. By asking you to explain something (the more complicated the better) tells me both what kind of doctor you are and how good of a doctor you are. I grade you by how you explain things (especially using medical jargon).
Just some things to take in consideration.
Just wanted to give y’all some links about where to find me. This will also be on my website.
Facebook Medical Updates Page: Emily Jensen’s Medical Life
My Business Facebook Page: Emily Hendricks
Email: emilyhendricksllc @ gmail . com (no spaces).
My personal Facebook account is just for family, friends and both VACTERL adults and parents.
This evening I was admitted to the hospital for a bladder infection.
A friend told me earlier this week that she loves how I find the silver lining in unfortunate and unpleasant situations.
Here’s my silver lining for today:
I only have one infection, which means this should be easier and quicker than normal to kick. Except for this infection, I’m apparently very healthy – I’m not dehydrated, my organs are fine, my blood levels are normal and my blood is clean and free of infection.
I’m not saying that this current infection is going to be fun or easy. I’m getting antibiotics that will produce some not so nice side effects, but thankfully there are medications I can take to counteract that. Eventually, I’m going to have to have surgery to fix what’s wrong with me that keeps giving me infections. Hopefully once that happens I will be much better.
I see other silver linings in other situations as well. For example, I take comfort in the fact that when my stepfather passed away he was blissfully unaware of what was happening and that he was out of pain.
Being born with VACTERL gave me a set of close friends and also the love of my life. If I wouldn’t have been born the way I was, I wouldn’t have met Mat and I wouldn’t have found such a fantastic group of people whom I love like actual family. I also wouldn’t have the medical knowledge that has assisted me in helping family and friends understand their medical issues and help them reach their treatment plans and goals.
My hellacious year that was 2012 brought me a ton of silver linings. I learned how strong I really am. I found out who my friends are and who my friends aren’t. My marriage became 100x stronger… I mean, if we could make it through that, we can make it through pretty much anything.
Please don’t get me wrong – I’m not exactly Suzy Sunshine. I get pissed, angry, scared, worried, upset and downtrodden sometimes. However, I never let myself throw too much of a pity party because being upset about things you ultimately can’t change won’t get you anywhere or help you in any way. I’m not saying its always best to accept the hand you’ve been dealt, but I do know that sometimes you just have to accept you can’t change all the cards and you just must move on.
This week has sucked. Haylie passed away on Wednesday, Allie passed away right after that and then Dan passed away Saturday morning.
Dan’s death hit us all hard because it really was a shock. Yes he had cancer and yes it wasn’t pretty, but we honestly didn’t think it was going to take him when it did. But it did and it happened and there’s not a damn thing we could do it about it. For all the things I did for him, especially in this last week, it breaks my heart that I couldn’t save him. I was the one labeled “the most difficult family member” – because I had the medical knowledge to look at a test result, or a lab result, and say “That’s wrong” or “That’s off” or, the nurses favorite, “Have you called the doctor about it yet? No? Do it now.”
I was there when they put the NG tube down his nose to drain his stomach on that last day; it about killed me when they handed me the consent form to sign, because I knew he didn’t want it but I knew he had to have it. At that point, I just wanted to make him comfortable and I would have done anything and everything to make that happen, including not signing the form until I knew that they would give him a mild sedative for the procedure. That was the benefit of having me as a stepdaughter, he told nearly anyone who would listen – I had been there, done that with so many medical procedures and tests that I could tell him right off the bat if it was going to hurt or if I thought he needed it. I was always gentle about it, but I was always completely honest and up front. Once or twice I did say “You need to do (whatever procedure), it’s going to hurt like hell, but you need to do it.” He listened to me the majority of the time.
He has elderly parents, a stepmother and a sister who are all grieving our loss. He has two daughters, whom I never met but I will tomorrow, at the funeral. A week ago Dan told me that he gave me even more family members when he married my mom and he’s right – I gained a couple of psuedo grandparents, a psuedo aunt out of the deal. My mom has unfortunately done this before, when her previous husband (my first stepfather, not my actual father) passed away in 2006. It doesn’t make it easier, but at least she and I know what to expect. It’s oddly comforting that I know we got through this before and we will again.
We are burying him in his hometown, against his wishes. Our reasoning is that he already had a marker there, and a plot, next to his previous wife who died of cancer in 2007. By the way, he died on what would have been their 29th wedding anniversary. Yep, kick to the gut, isn’t it? We’re doing that because it’s the most practical solution and doing the services down there will be easy for his parents, who are understandably not taking this thing well.
I wrote his obituary – thankfully, I used to write obits as part of my job. His was the third one I wrote for a family member and because of my journalist background making me the go-to-girl for all things writing/newspaper related in my family, I’m sure it won’t be the last.
Three deaths in four days sucks. I couldn’t go to Haylie’s services or Allie’s burial because they were too far away, so I’m going to have to give myself closure about their deaths some other way. Dan’s funeral, however, I’ll be able to attend. It will be one of the most difficult things I’ve ever done in my life, but I’m going to go because I know I need to – for me, for my mom, for our family and for Dan. I can’t promise I’ll make it through without breaking down. I can’t promise that I will be able to go to the actual visitation where the casket will be open. I’m going to try my damndest because that is what matters – all I have to do is try.
In February, Dan and I were hospitalized at the same time. He had fluid on his lung, I had seven infections in my bladder. He was in for 4 days; I was in for 23. I was admitted first, so when Dan was admitted through the ER my mother asked them if we could be put on the same floor. They did better than that – they put us first in rooms across from each other, then they moved him to the room next to mine. I was able to check on him often and he checked on me often; he was released after he got better but I had to stay another week or so because my infections didn’t want to die. He was so happy he got to leave but he was sad leaving me there, I know. This picture was taken when my mother came and visited us and we took a trip walking the halls.
Tomorrow is going to suck. Funerals are never pleasant and I have a feeling that this one is going to be worse than any surgery I’ve had or any infection or abscess I’ve ever experienced; my goal is to get through the day and be done with it.
The outpouring of support and love have been amazing and we can’t thank you enough. He passed away very early on Saturday morning and I made the required phone calls on my end – my husband in Denmark, my grandparents in Florida. I texted my cousin in New Hampshire who automatically offered to get on a plane. My best friend from preschool took me out Saturday night and had me laughing for awhile and gave me enough distraction I was able to not think for just long enough to save my sanity. My VACTERL friend Annie notified the VACTERL adults for me and they all called and texted and checked on me, and they’re still checking on me frequently. They’re a damn good support system. Once I put it on Facebook, mom and my’s phones blew up with condolences and offers to help and just love. I have kept every single condolence text message that I have received – and trust me, there are a ton – and it’s another oddly comforting thing.
Thank you to everyone who has called, texted, commented on a Facebook post or wrote on my or my mom’s Facebook wall. Anything and everything you’ve done in the past few days have made us both feel loved, appreciated and like we aren’t in this alone.
Throughout my life, I’ve had several step grandparents. My stepmother’s parents, both my stepfathers’ parents, and my paternal grandfather’s exwives. Grand total? Ten.
Yep. There’s a reason my husband stopped trying to figure out my family tree.
Tonight I found out that one of my favorites passed away. Allie was my grandfather’s second wife and they had an interesting relationship… They dated after they got divorced. I loved her.
She moved away several years ago and developed dementia; it didn’t matter because her death came as a blow to me, probably because I remember her genuine love for me and for life. She was one of a kind and she took care of me even when she had no responsibility to me. Oh and she snuck me Cokes in the hospital when I wasn’t supposed to have any. I loved that.
Rest in peace, Allie Mae.