Health Update Time: It’s All Good… Well, Mostly Good!

Howdy Readers, Friends, Loved Ones.

Much like the President and his State of The Union, I feel like coming here and posting a big ole update about my health and where it stands is something I like to do, and I do on a sorta regular basis.  I mean, it’s totally as legit at the State of the Union, right?

I mention my health in passing, and for the sake of advocacy, understanding, and information – I like to be an open book.  It’s been more than eight years since my battle against Stage III Lymphoma played out publicly in college – but my own health issues and ordeals are not over.  In going through all of that in front of so many others, I realized that by being open, I was helping others.  So many people who’ve dealt with cancer have reached out to me, and I’ve helped how and where I can.   Yes, it’s in small and tiny ways, but good ways nonetheless.  So, when I can… I’ve been able to offer compassion, support, empathy, and love.  And now with my sweet ole blood disease, I am just doing what I know how to do: be a blabbermouth, and if anyone needs help, I’ll do my best.

I have porphyria.

It’s a blood disease.  It’s genetic.  There’s no cure, and you have it forever.

It’s complicated, weird, hard to explain, hard to understand – yes, it’s all of these things… but, it’s manageable.

By far the biggest, best, and most amazing breakthrough in my life as a person with acute porphyria was the DNA test I had done in Hawaii.  I know the exact mutation in my genetic code that causes the blood disease I have.  And if you think you’re special – allow me to trump you.  I am, to date, THE ONLY person to have ever been tested with this exact mutation.  Talk about ONE OF A KIND!

Now.  I know I’m not really all that unique.  The likelihood that members of my family share this specific mutation is very high.  We are likely a one-of-a-kind porphyria family.  And given how genetic diseases and mutations work, well it’s not really that fancy.

So… onto the good stuff:

HOW AM I DOING?

I’m okay.  I’ve had some attacks lately.  Triggers-and-attacks is the cycle of my disease, with lovely periods of calm remission in between.  Triggers for me include stress, illness, medications of certain kinds, alcohol, preservatives, lack of sleep, and more. Around the holidays I was eating tons of processed meat and cheeses, which I love, but which are oh so bad for me.  Add to that the ole Santa Pub Crawl I couldn’t miss out on, and a lot of travel and staying up late, and well – I created my own little perfect storm, didn’t I?

At the Santa Pub crawl we held in Fredonia, much like the real giant Santa pub crawl that takes place in Buffalo every year!

at the santa pub crawl we held in fredonia, much like the real giant santa pub crawl that takes place in buffalo every year!

a totally weird and silly pic from that night

a totally weird and silly pic from that night

i did too much of this

i did too much of this

and delicious as it is, i ate way too much of this kind of stuff during the holidays.

and delicious as it is, i ate way too much of this kind of stuff during the holidays.

i stayed up all night while visiting my sister for christmas eve.  d'oh! i need sleep!

i stayed up all night while visiting my sister for christmas eve. d’oh! i need sleep!

 

I did.  I made some bad choices… and I payed up for it.  I felt pretty crummy for a good chunk of December.  I modified my behavior though, because I love my body and want to give myself the best shot possible.  Even though some choices seem tough in the moment, in the long run they’re important.

so i abstained from booze for the rest of the holidays, even christmas day and new year's eve!

so i abstained from booze for the rest of the holidays, even christmas day and new year’s eve!

outfit repeat, but really - here i am as the d.d. on new year's!

outfit repeat, but really – here i am as the d.d. on new year’s!

After a while of clean living and good choices, I seemed to have really pulled out of things.

at duggs' work's winter party - we had a blast, and i felt pretty good.

at duggs’ work’s winter party – we had a blast, and i felt pretty good.

I am feeling better now.  At last month’s visit to my docs, we adjusted my meds.  I am now happily on a new form of medication that I get through a patch.  Isn’t technology rad?  Since porphyria affects my liver and its enzymes and red blood cell production, getting meds into my body without bothering my liver is excellent.  Yesterday I went back again, and we tweaked the doses a bit, so once those get filled and I regulate out… I’m hoping my day-to-day will be even better.  It’s really nice to be on meds that don’t have so many long-term effects on me and side effects, etc.

I’m seeing a couple new doctors, too – and they are really wonderful and very committed to helping me get the treatment I need, when I need it.  I’ve just recently opened up the lines of communication with my local in-town doctor, so the next time an attack happens – I can get into a hospital nearby and get the IV treatments that help me stop an early attack in its tracks.  And now the meds I need, should a serious attack occur, will be known and available (in Hawaii, this was pretty serious – they didn’t have ANY of these meds on the island before I got there… eeks!).

Coming from the military system to civilian world of medical care has been… well, halting.  The expense of my meds alone was enough to crank up my stress to attack-inducing levels.  Finding the right meds, that my insurance will cover, has been a task.  It was pretty crazy there for a little while, but things are looking up for me now.  It’s also been hard to piece together a communicative team of experts.  In the military system, all my docs could see each other’s notes, save for my primary care – they were all in the same building.  So the convenience factor has shifted a bit, it’s been a learning process, but it’s getting there.  I am happy with the team I have now, and I trust their expertise and compassion – very much so.

Otherwise, nothing really new or crazy or wild to report.

I’m still me.  I’m still human.  I try and live life just as me, weirdo wacky Rose… and not as a person afraid to experience life and deal with the affects on my body.  It’s a balance though.  And in every attack I experience, I wise up about my triggers and the lifestyle choices I need to, and should, make to avoid bringing issues upon myself.

So, there you go.

I still have Porphyria.  It’s not going anywhere!  But, everyday I think I get a little better at navigating what it means for me and coping with it all.  And umm, I’ll give a shout-out to my handsome life partner, Duggs (my husband) because he’s been an awesome man to have by my side through all of it.  My whole family is very supportive, and once again – I find myself feeling very blessed to have access to competent medical care.

so this is the most recent pic i could find... oh boy, not so flattering, haha.  but as you can see, i look normal and i'm outside and being wacky.  so, life is good!

so this is the most recent pic i could find… oh boy, not so flattering, haha. but as you can see, i look normal and i’m outside and being wacky, laughing, etc. can’t really ask for more than that… so, life is good!

 

Thanks for reading!  And thanks for following along the wacky and weird and up-and-down journey that is my health.

XOXO,

HHR – Happy Hippie Rose

PS: Just because I share what I go through, please don’t think that my porphyria is all I am or all that I focus on.  I’m a real, breathing, dynamic person.  And since my health is something people who know me worry about… and by being open and posting about it publicly I can help add to the available points of view out there on porphyria (since there aren’t many), reducing stigmas and encouraging others to talk about it, learn more, and so on… I do tend to mention it more often online than I probably do in real life.  But it’s just like anything that’s in a persons focus – real, but only one part of a whole, multifaceted life.  

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2,922 Bonus Days: That’s EIGHT Extra Years of life!

It’s that time of year again, ALREADY.  Thanksgiving has somehow come and gone, and Christmas is right around the corner.  My childhood BFF Mary just celebrated her birthday on December 1st (a chronological landmark I remember every year) and now the third is here…

It’s my EIGHT YEAR CANCER-VERSARY! 

Can you believe it?  It’s been eight happy, wonderful, blessed bonus years that I’ve been gifted since beating Stage III Hodgkin’s Lymphoma back in college.

The funny part about this commemorative occasion is that for the last several years, we’ve been celebrating it on December 5th.  In writing a post for this very blog, I uncovered some old photos, and actually found my radiation completion certificate – and lo and behold, it was dated the 3rd.  So the third of December it is.

The certificate of radiation completion!

The certificate of radiation completion!

This morning when I woke up to some texts and emails from family, I kinda found myself reflecting for a bit.  My moods ranged from full of awe and reverence to downright giddy. On Facebook, I posted an image of my cancer-beating certificate, and I’ve gotten an obscene amount of likes on it, like in the 160s and climbing.  And my dear pal and former-roomie and current co-worker Sasha “Salsa” Freeman Gray has been quite lovely in uploading some of the sillier pics from those crazy cancer days.

I was in college, had already gone through some really crazy health issues (a mis-diagnosis of Crohn’s Disease led me down the garden path of insane meds and eventually a full bowel obstruction which required a surgical resection), when my neck started to look like a sock full of golf balls – at least that’s the easiest way I’ve come to describe it.   I was tired, running slower than usual (literally, I ran a 5k and noted that my time was really slow, even for me), and I was having terrible night sweats.  Eventually I developed a non-producing cough, and around the holidays I just assumed I had some kind of supercold that my immuno-suppressed body couldn’t really fight so well.  It wouldn’t be until February of 2004 that I’d begin the process of diagnostic testing, and actually April when we found out for sure that it was Stage III-BS Hodgkin’s Lymphoma that had taken my collegiate body hostage.

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With Sasha, while getting my head shaved. I didn’t want to wait for it to fall out, so I took the matter into my own hands and got my pretty round head buzzed after my first chemo round.

In the process of shaving my head, I of course, had to take pause when I reached the excellent stage of MULLET.

In the process of shaving my head, I of course, had to take pause when I reached the excellent stage of MULLET.

I’ve gotten some interesting questions today – people wanting to know what it was like, how I’ve made the most of my time since, how I’m doing now… so without boring you all to death, I’ll try and give some tidbits:

What is it like to know you have cancer? 

Cancer was wacky crazy and very surreal for most of the experience, with one grindingly serious memory that jumps forward in which I finally absorbed the fact that I indeed had fecking CANCER and that it was hardcore.  Most of the time though, when you have cancer and you’re all chemo-bald, people know what your deal is and they’re very nice to you.  In my ongoing health issues with “Crohn’s Disease” and what we now know to be Acute Porphyria – it’s different. 

The serious realization came about very randomly.  I was driving home, and I was getting on Hodges from JTB (Jax ppl know what I mean), and it just hit me: I HAVE CANCER.  THIS IS SERIOUS.  And it kind of quietly overwhelmed me for a few moments, but by the time I got home I felt “normal” again.

How old were you? 

I was 20 when I was diagnosed, and celebrated my 21st birthday between chemo sessions.  I remember going to the Pepsi 400  (because that’s what it was called back then) on my actual birthday (July 3rd) and when a freak rainstorm came through I was freezing.  My then-boyfriend, Rick Neidringhaus, went and bought me some sweats and a windbreaker for my two favorite drivers: Darrell Waltrip and Dale Earnhardt Jr, respectively.  I still have the pants and actually wear them often!

Sasha and bald-me, circa Fall 2004.

Sasha and bald-me, circa Fall 2004.

What got you through?

This one is easy: God, faith, family, friends, the entire UNF family, the Greek system, and my incredible team of doctors, nurses, pharmacists and techs – all the good people of Mayo Clinic in Jacksonville who efficiently and effectively saved my life.  I had top notch doctors – I was already a patient at Mayo because of my aggressive “Crohn’s Disease” (since I really didn’t have Crohn’s, my body would never respond to the treatment – rendering me a medical outlier with an extreme case and therefore in need of the best doctors in the land.  Luckily for me, I lived in Jax, FL at the time and had Mayo access just a few miles from home).

I kept a really awesome attitude the entire time.  I bore everyone to death with the stories I tell again and again – but the one that I must tell when I saw a mother and her wheelchair-bound small child park next to me at Publix the day I was officially diagnosed.  Seeing that kid who has likely never walked and likely never will, I refused to feel sorry for myself.  It changed my entire perspective on the situation.  The first 19 years of my life were spent in excellent health, as I lead a life of privilege, freedom and one full of lovely memories and special experiences.  Had I died the day I was diagnosed, I wouldn’t have had a regret or a single sad feeling for myself.  Having cancer is what it is – once that tough lump is swallowed, all that’s left is making the best of it.  So I fought hard, kept my chin up, and did what I always do: plow my way through with some jokes and a lot of laughs, and a firm anchor to God and faith in the ultimate plan He has for my life.

Have these eight years been well-lived?

I mean, according to me – YES.  Heck, yes!  I’ve done some pretty amazing things and I believe I’ve chocked eight years full of an awful lot of life.  I’ve traveled, I’ve helped others, I’ve tried new things, I’ve experienced love, loss, happiness, and pain, full spectrum human experience.  I’ve created art, made others smile, formed friendships in the strangest and most normal of places – and every now and then I hear the “I word,” that I’ve inspired someone else into doing something good or at least having a good attitude about whatever it is he or she has going on.

Knowing that I can actually inspire others is very humbling.

Knowing that I’ve literally been granted 2,992 extra days of this life (heck yes I counted Leap Years) is humbling.

Snorkeling in Hawaii.  I've had a very happy life, yes!

Snorkeling in Hawaii. I’ve had a very happy life, yes!

I ran my first marathon this year, 26.2 miles!

I ran my first marathon this year, 26.2 miles!

Helping Sandy Relief in NYC last month.

Helping Sandy Relief in NYC last month.

My husband + me, smooching from a deer stand.

My husband + me, smooching from a deer stand.

Me - hunting just this past week or so!

Me – hunting just this past week or so!

So what’s it like now?

It’s both far-removed and ever-present.  The scars have faded, but they’re still there; and I still have my very first tattoos – the radiation dots that they marked me with to make sure they hit the same spot every day.  (As far as scars go, I had a couple stitches in my neck from a biopsy, another incision on the left side of my neck from having a lymph node removed, and I have a scar on my chest when I had my port-a-cath taken in and out).  I don’t obsess or worry about relapsing like I once did, and I don’t have to do the often check-ups and scans as I did in those first crucial years of remission.  I passed the five-year milestone three years ago, and that was a BIG ONE.  That’s the “you’re cured” milestone.

I don’t ever want to lose touch with that experience though.  After all, having been through cancer is a huge definer of who I am as a person.  It shaped me into a MUCH nicer person in general, and a tougher person in many ways.  It gave me a glimpse of my own frailty and left me with a profound appreciation for life and every breath I take.  And with that comes a responsibility to carry out a life well-lived and to do good in this world – and I find myself still trying to grasp at the best ways to keep that promise.

From this experience, what still impacts you today? 

I forever live with inexplicable gratitude in my heart.  For every nurse who held my hand, every doctor who took the time to make sure I received exemplary care… to my loved ones who came with me to chemo, prayed for me around the clock, and supported me in so many ways that words can never express… to the friends, classmates, and total strangers who came together to raise funds to help cover the costs of my treatment, to my Dad for working hard and having a good job that provided excellent insurance for me and money still to cover the costs that even excellent insurance didn’t take care of.

I carry with me a legacy of the hopes, dreams, and the honor of so many people who aren’t as lucky, of those who came before me and the technology that saved my life, of those in circumstances that don’t allow for early detection or top-notch medical care, of those who just don’t win the fight.  And that’s something that’s very real with me, a part of who I am.  We stand on the shoulders of so many giants, and I can’t ever forget that.

Mostly though, I just feel like me: Rose.  A happy wacky tie-dye loving slightly-redneck weirdo who often smiles and laughs everyday, and who is truly loved.  And I’m happy to be me, and I feel blessed to be me – each and every day.

I suppose if there was ever a profound take-away from an experience like mine – it is knowing in every ounce of my being that I am loved.  By my God, my family, those around me then and now, my husband, my friends, my sister, and even strangers – yes.  I am loved.  And being able to come face to face with such colossal concepts as life, death, and love is an honor that I am humbled to have experienced and lived through to write about now.

This post is dedicated to all of the many, many people who saved my life.  And to the many more lives that are forever changed by cancer, in all manner of ways – both happy and sad. 

Thank you for reading and for your support.

XOXO, 

HHR

Black Lung Out, Insomnia In: A Lyrical Look At My Health These Days.

Howdy readers, pals, random web browsers who have stumbled here and have no clue of the incoherent weirdness with which you’re now facing head on!

So, last we chatted about my health I was going on and on about the mold issue in our home in Hawaii.  I’m happy, hell – ECSTATIC, to report that since leaving the home of the mold, I’m feeling much better.  Markedly, gloriously BETTER.  It’s amazing the difference, actually.  I think at first I was nervous to come right out and say it, out of fear that it would be short lived or something else.  But alas, it’s been a few months now and I just feel better all the time.  So, for me, the debate on the mold issue is settled: there was mos def something in that house that was crippling me, killing me softly.

Overall I feel great day to day.

I’m down on meds, at a very low level and in the process of a final taper.  Which given the past 18 months I’ve faced is quite incredible, honestly.  It feels amazing, I’m more than blessed to be writing from this vantage point right now.

I mean, clearly there’s no cure for Porphyria.  I’ll deal with that my whole life.  I’ve actually had one small flare since moving here – last month was a (ready? TMI is a-coming now…) right ovary month, and the cysts must still be there.  After a few months reprieve, last month was AWFUL.  Some of my close gal pals can attest, I was tethered to a heating pad and hunched over for several days.  It was so severe, it caught me off guard.  And of course in my domino reaction of a body – one thing can and will trigger something else.  Thus, the stress of acute pain sends me into a Porphyria-based decompensation (fancy way of saying “an attack”).  I carb/glucose loaded though and headed it off at the pass.

I’d like to thank my darling husband for his extreme attentiveness and ability to identify the early warning symptoms better than I can (honestly).  It’s what really helped us to keep things down to a little blip on the radar and not a colossal melt down.

So, the ovarian cysts.  That sucks, yes.   Not tragic though, so don’t cry for me Argentina.  It’s fine!   This month is business as usual and it seems as though Lefty-the-Other-Ovary is fully functional and normal.  To inquiring minds: fear not, I’ll seek the proper medical attention about all of this.  No more winging it, I promise.  But really, it doesn’t feel too urgent to be seen these days as  I’m basically fine.   Well.  Insomnia – that’s the only other ailment I really could mention.

The funny thing about Insomnia though, I don’t really hate it.  I’m a legit insomniac because I’m not ever tired.  I don’t drag all day, and at this point I’m consuming little-to-no caffeine.  I just don’t sleep.  It’s weird.  I always feel in the early hours of evening that I’ll be nice and sleepy come night time… and then, a flip switches and I just get that second wind.

the sunsetting over lake erie last weekend – as night comes on, i wake up.

Night time is a magical, quiet, intoxicating time.  I adore the sun and daylight, believe me.  But night is oh so nice too.

Last night I stayed up until about 5:30am today – at which time I rested for a couple hours.

Don’t scold me!  I know with the upcoming marathon this won’t do at all.  I know how paramount sleep is to proper recovery and healing, as well as overall health and injury prevention.  It’s not an every night, up all the time thing.  It just sometimes strikes me and that’s it- no sleep (’till Brooklyn).  I think it’s genetic.  I know my mother is a crazy night owl and often prone to Insomnia as well.  And my Dad, i don’t think he’s averaged more than four hours a night my entire life.  He just doesn’t sleep like the average person does.

Last night was one of those great nights to be alive.  After these hot, cloudless days – the crisp night air is an incredibly welcome change.  I actually ended up going for a nice long run around 1:30am.  It was gorgeous.  I love night running… the low moon hung huge, in a pretty golden crescent and the cool air felt awesome on my skin as I ran miles all over this sleepy rural town.  Afterwards I came home to a quite house, and I stretched and showered.   Still wide awake, a devilish idea struck and I found myself at Tim Horton’s moments later.   After a surprisingly good bagel breakfast sandwich I was able to feel sleep lapping at my body and mind.

drive thru, with my twenty pack giving me the eye

a very dark and kinda creepy, mostly terrible pic of me in the drive thru

thumbs up for getting the egg white version, thumbs down for bacon. oops!

Overall, I have no complaints!

When I was so consumed with the mold and it was taking over my body, I was sleeping SO MUCH.  Like, 16 hours a day kind of much.  Lethargic is an understatement.  Having energy and stamina now is a welcome blessing!  After the year and a half I’ve had, I’m very ready and willing to sweep the inconveniences under the rug and focus on the monumental improvement of which I feel.   And better I do feel – it’s amazing actually, liberating and nice.  It feels good to be awake, energized, and alive.

It’s been a long time coming.

FIN.

As always, thanks for reading!  xoxo, hhr  

30 Days of Blogging Honesty: Day 5

Day 05 — This is embarrassing but on average I cause the toilet to overflow about this many times a year because of deposits I made…

oy.

If you don’t want to read about poop and other such unsavory things, stop here.  I mean it! I have GI troubles galore, and I’ve been through nursing school.  When it comes to all things bowel, I can talk and talk and talk, and not get grossed out and well, I know not everyone shares my blase approach towards all things fecal.

I clog the toilet sometimes. 

Wanna know what gives with the weird question?  I’m playing a blogging game, participating in a fun blogging event.  Tom Baker and Cherlyn Cochrane created the “30 Days of Blogging Honesty” challenge – chock full of 30 writing prompts + one dare at the end!  Yowzers, it’s been wacky and fun, pushing me to write outside of my own comfort zone as well as to adhere to a schedule of posting (which I’ve been hit and miss on, so far).

To read all the rules and prompts, click this link.

In fact, the first clog in our Hawaii house actually just happened like two weeks ago.  It was a tandem clog.  I triggered the plumbing’s sensitivity, then Duggs forgot that potty was off-limits until I could fix it, and yep.  He good and clogged it, we’re talking overflowing all over the place.  A brown-water back up.

It was nasty.

It led to a new purchase, actually.  Check out this little gem we’re not the proud owners of:

new plunger/brush combo = so sweet!

Why do I have GI drama?

I was diagnosed with Crohn’s Disease when I was 19 years old.  I had two surgeries, took more meds than any college-aged gal should ever have to take, and when it was all said and done I was down an appendix, a bunch of bowel, and part of my colon.  The meds never made an impact on my “very aggressive” disease, and my bowel kept swelling, turning red, getting more diseased, more problematic, not processing or absorbing food and just basically giving me all kinds of agita.

Now, it looks like the reasons my trusty barrage of Crohn’s meds never worked is because I never had Crohn’s after all.  It seems like the blood disease I have, Porphyria, can cause nerve cell death in the GI tract, and that would mimic/emulate the kind of damage that an advanced and aggressive case of Crohn’s could do.

Wacky, huh?

So.  Now I’m left with shortened-bowel syndrome.  I have a very fast track, a nice anastomosis where the resection was clipped and re-connected, and some scar tissue that isn’t much of a problem now, but has been in the past (in ’09 I had a bunch of pelvic scar tissue zapped out with a small surgical procedure).

Add the pre-existing bowel dramz to the last 15 months of weird ear pain / medical malady / porphyria stuff … and it gets interesting.  The meds I’m on now actually cause constipation.  For someone used to going like eight or so times a day, being clogged up is AWFUL.  It’s so weird, foreign, frustrating, yucky.

On top of the meds I take for my other issue, now I take meds to make me go.  I drink PEG (miralax, it’s actually PEG powder that you mix with water, Polyethylene glycol, aka: “GoLYTELY”) every single day, I have a natural senna tea that I make.  I take 4 stool softener capsules a day too.  My intake of fiber and dairy are closely monitored.  I pay attention to what I eat all the time, always wondering if something will have an adverse effect on my very fragile homeostasis.

mmm, PEG! my favorite cocktail.

While the actual clogging of a toilet isn’t such a super often occurrence in our home… the opportunity for a situation to occur is right there, waiting in the wings.  My potty problems are plentiful, yes.

It’s something that I’m not even weird about discussing, I don’t usually mind it.  I guess the context just depends, the company I’m in will dictate how comfy I am with the details.  I used to think that I was totally normal.  When my college roomies sat me down and explained to me that I go too much, I felt like they were just picking on me.  “Everyone poops, don’t make me feel like a freak!” was my defense… constant BMs had become so very normal to me, I thought everyone went every waking hour.  I really did.

Once my GI problems were identified, it’s just been a constant battle.  I’m always having tummy aches and pains, I’m always having issues.  After my bowel resection, I was still in pain.  And not just your regular ole post-op pain, it was hurting just as it had before the surgery.  I told my docs and they thought I was nuts, they told me I had phantom pain, actually.  A C-scope later revealed that they hadn’t been able to remove all of the diseased tissue.  Crohn’s often presents with “skip lesions” – both another reason why what I had looks so much like Crohn’s and another reason why it’s hard to cut it all out.  Skip lesions are areas of disease that skip over areas of normal tissue, making the problem stretch out longer, making it harder to just cut out a bad part.

image credits: john hopkins g.i.

image credit: john hopkins g.i.

Luckily for me, I’ve never had a colostomy or ileostomy or any bag.  It’s been a HUGE fear of mine though, I always worry that someday it could happen for me.  I know it’s not the end of life and that millions of people live with worse things everyday.  For me, born in a bikini and spending so much time coming and going, hopping and bopping… it feels like it would be an epic game changer.  One that would be hard to deal with on many levels.  So, since I’m not one to stew in fear, I always just push that idea out of mind and stay thankful that it hasn’t come to it yet, not even close.

I have had a lot of other issues all in that same spot of pelvis where my gut is re-attached.  I’ve had a hernia there (repaired with mesh), I have ovarian cysts in that right ovary, which is right there.  I don’t have an appendix anymore, I’ve had to get scar tissue removed because it was growing rampant and messing with my range of motion.   That spot, McBurney’s Point, always hurts me.  It’s a troublesome spot, and since so many issues overlap right in that small region it can be so tough to decipher what’s causing what.

image source for this lovely mcburney's diagram

Since it’s likely that porphyria is my problem, I don’t take any GI meds to regulate things.  I just wing it.  That’s why it’s hard to keep things running smoothly, at least it can’t be helping.  It’s also why I’ve likely not had another major outbreak since my bowel resection (which was the Thursday before Easter in 2003, also that date that’s now our wedding anniversary, April 17).

I can’t wait to get my current health situation under wraps and be off the meds and get things back on schedule again.  Gas pains hurt so badly, being bloated and slowed up all the time is so hard for me to adjust to.  It’s why I take so many other poop-inducing meds to try and really push things along.

So back to the actual over-flowing of the can:

When it did happen recently in our home, I was the one who played plumber and picked it up.  I’m really not so sensitive to that kinda stuff, so I slapped on some gloves and got to it. I sanitized that bathroom beautifully, you would never know that anything so much as happened in there!  And well, I know that the common thought is that it takes a big situation to make the flow go backwards – but, well, I don’t think it was actually like that.  I don’t ever use an obscene amount of toilet paper, we don’t even own paper towels, I don’t flush non-toilet-appropriate things down there… it was just crappy plumbing (pun intended!).  We have very fickle pipes and plumbing here, and this is just one of many issues we’ve had lately.  Flooding dishwasher, flooding washing machine, crazy sink, running toilet, wonky shower pressure… it’s all par for the course around here.

So yeah, all that came of it was a new cleaning combo device which I like so very much.  And a little bit of time spent mopping up a rather nasty smelly mess.

This will now conclude the grossest blog post ever typed here at happy hippie rose.  If you read it, I don’t even know what to say!  Thanks?  Congrats?  Good for you?  I hope that this doesn’t gross you out and keep you away from my otherwise very nice and flowery blog.

And tune in asap for more of these wacky 30 Days prompts… I have a feeling that the really bizarre stuff is still yet to come!

As always, thanks for reading!  xoxo, hhr

30 Days of Blogging Honesty: Day One

If you missed the crazy, obscene, verbose intro post I just threw up – you may want to just consider yourself lucky and start 30 Days of Blogging Honesty journey right here.

Just kidding! Go read this crazy mess right meow.

30 Days of Blogging Honesty

Let’s dive right in, shall we?

Day 01: The one thing that it seems like everyone else on the planet is into but I just cannot stand is…

Loud noises. 

My right ear is super sensitive to sounds, a condition that’s plagued me for the past 15ish months (more reading on my ear dramz, here).  Loud noises, jarring sounds – beeps, boops, thumps, screams, yells, horns, blasts – it almost hurts just thinking about them.  My ear is just so tender, the noises amplified all the time.

I wear ear plugs often.  I always have a set in my purse.

i have these exact ear plugs, little carrying case and all. so clutch, they're pink! photo credit: http://www.hearos.com/sleepprettyinpink/

When I go to the pharmacy on base and there are loud kids or crying babies in that small area, the noise just bounces off the concrete, at every angle imaginable, and just comes at me in painful jabs; I get this image of thousands of knives bouncing every which way, all around, and yet magnetically attracted to my right ear, bee-lining into my dome.  As it hurts I have to try so hard not to wince, make a face, or react lest I feel like a jerk.

no privacy, no sound absorption, no problem! k-bay health clinic, the pharmacy is in that center corridor, to the left. you can't really see if directly in this photo, the patients don't go inside though - we wait outside in the covered hallway and go up to the window to get our meds. photo credit: http://usmilitary.about.com/od/usmcbase/ss/Hawaii_9.htm

I love kids and babies and I totally understand the great chance that little ones at the pharmacy are in discomfort and/or don’t feel well, maybe something is wrong with another family member and stress levels are high, or just that running errands isn’t fun and the kids are bored, restless, over it.  The last thing a Mom needs is me giving her the stink eye.

So I just have to take it.  It HURTS ME.  It’s physically painful in a way that I never anticipated. And when I’m out in public I don’t explain my weird ailment and predicament to others… I just silently take it.

me, at Tripler Army Hospital, getting one of my nerve blocks in an unsuccessful attempt to alleviate the ear pains.

It’s like that with all kinds of accidental sounds – the clatter when someone drops something on a hard surface, a speaker at church who has microphone pops or reverb (the music at church can do it too), or sometimes the sound guys have the mics accidentally turned up too high and regular talking is too loud and thus assaults me in the eardrum… trucks going in reverse and making that beeping, the emergency broadcast system weekly, monthly, whateverly tests that just pop up in the middle of a TV show, calling a wrong number that’s actually a fax machine, plugging my iphone headphones in and the volume is all the way up by accident, those stupid memes that are tricks when the scary monster and crazy sound effects pop up, talking on the phone with a friend and something wacky and loud happens on their end that I never saw coming, like a baby who wakes up from a nap all of a sudden or their smoke alarm goes off and I get pierced in the ear, any kind of squeak or squawk that just happens from cawing birds to sneakers on the gym floor…

there are SO MANY accidental loud sounds that hurt me.

how hearing works. mine is like times twenty and your kids, your ringtone, your car speakers... they're that green zig zag of pain. image found on: http://hearingtherapyaustralia.com/info/hearing.html

bizarre and sensitive cysts that crop up behind my ear contribute to my ear pains. no idea where they come from, no idea how to treat them. (i actually have a bunch right now for the first time in months, probably stress-related since i've been sick and my body is taxed more that usual).

And then there are the not-on-accident noises that suck too.  Like any kind of whistle, ringtones, car horns, car alarms, my neighbor’s car bass that he insists on using no matter what time of day or night it could be – including when he’s working on his vehicles in the car port (the carport that’s feet away from the a wall that for my living room, kitchen and bedroom), did I mention ringtones? Yelling, screaming, cheering, clapping, shooting (I live near the shooting range you know) … audio with wacky, high pitched sounds (I was once listening to a podcast that had some sound effects that were so shrill I couldn’t get through more than a couple minutes).

one man's jackpot is another gal's torture device. oy, just looking at this hurts! photo credit: http://interiordesigncar.com/car-interior/car-gear/

All of the neighbors whose back yards face our back yard seem to have 24/7 outside dogs and they bark, and bark, and bark.  It’s like a loud domino effect that just goes on all the time.  They bark louder than my TV is inside, they bark so loud I can’t hear Duggs when he’s inches away from me.  It’s insane. I’ve never lived in a place with so many dogs, all so packed in close together, where the dogs and just left out on their own and thus they’re irritable, on edge, angry and barking.

the view of our yard looking more towards the back and to the left. bailey tanner is on my shoulder like a parrot whilst jayjers is along the fence.

the house directly behind ours, up the hill. there's always a dog or two outside, particularly barky!

that wonky palm tree is in the far right corner of the back yard. that yellow block of houses is one street up the hill from ours, that whole yards-facing-yards thing.

jj'r rump ... standing in our back yard and facing towards the right (towards the firing range as well, just to paint the whole scene).

I probably could have answered “outside-only dogs” for this too (while we’re on the topic).  I can’t stand people who own animals and then just leave them out in a sun-drenched hot back yard all the time.  And when it comes to my neighborhood, I really mean ALL the time.  Day and night, 24/7, these pooches are just outside.  At least we have fences… but I can’t help but think that without the fenced-in yards these dogs would be inside actually getting affection and attention.  (I’m naive though and without the yards they’d probably be tied to a stick, let free to roam, in a crate in the back yard or at the glue factory. Oy).  These poor deprived doggies just sit out on their own, all alone, no one talking to them, petting them, no one to play with.  It’s so sad.  I can’t stand it.

Anyways.  Loud noises – I’ll stick with it.

These examples, while hardly exhaustive, at least offer some insight into what it’s like to have this crazy ear dilemma and just try to live day to day.  It seems impossible to avoid sometimes!

the view from right in front of our house, over that hill towards where the sun is coming from is a firing range... you'd think it's far enough away not to hear, but depending on the wind and what's being shot, it can carry!

Irony at its finest: I’m by no means a naturally quiet person.  I have a booming voice, I’m clumsy, I used to be kinda hard of hearing and would always have things turned way up…

Go figure.

Now I love quiet.  I love peaceful, calm, serene quiet spaces without shrill, shrieking, annoying noises.  I keep my phone on silent all the time, I haven’t been to many concerts at all this past year… I just gravitate towards a different sound comfort level lately since having this problem with my ear.  (I mean, don’t get me wrong – I have deaf friends, and I can only imagine trying to cope with that, I’m so grateful that I can hear at all, and I would never want to be deaf or unable to enjoy all of the sounds I so love, like my husband’s voice, JJ’s cute noises, talking on the phone, music, TV, and so on).

the hush of the waves is just the right volume level for me.

that's what i'm talking about - my two boys snoozing is music to my ears. well, as long as ole stinky duggs isn't snoring, of course.

What’s so hard to explain to people is that it’s really painful and my defenses against it are so limited.  Even if I’m wearing nice earplugs, if someone whistles near me – I don’t stand a chance.  I can wear the crazy big ear protection, but it gets kinda absurd to try and just act casual.

this is a nonchalant look for sure.

these are like the ones i always keep in my purse. fashionista status, right?

the best part, they go with virtually every outfit i own. photo credit: http://store.aihalaska.com/index.php?main_page=product_info&cPath=14_1403&products_id=31549

So yeah, I can’t stand loud, shrill, piercing, booming, noises and sounds.  But the longer this ailment of mine plagues me, the more I’m convinced that the world is obsessed with upping the decibles!

icing down the shoulder/back does help with my owwy ear.

There ya have it – day one is done!

Whew. Felt good to rant, honestly.  I feel like I consciously try to avoid using my blog for complaining… but man oh man, sometimes you gotta scratch that itch, huh?  Once in a blue moon, it’s nice.

Come back soon for Day 02 of this 30 day business, will ya? 

Click right here to check out Tom (the guy who’s created and is hosting these 30 + 1 prompts)’s Day 01 post, and to see a list of others participating.  His blog is hopping, provides more instructions, and is fun to read!

Feel like jumping in and playing along too?  Do it!  The Rules and 30 prompts are here.   If you want to play along, link on up – will ya?  Keep in mind that everyone will have different end dates as not everyone will blog everyday; it is totally not too late to start.  So c’mon and go for it.

As always, thanks for reading!! xoxo, hhr

Don’t think my post was wordy enough?  No worries… here’s some addendum I was going to axe, but I already went to the trouble of including links and stuff, so why the heck not:

How I Locked In On Choosing An Answer:

Actually, I went through a whole lot of answers to get to this one.  Oodles of ideas for a rantalicious, complaint-ridden post came together.  The concept started out pretty flat and plain, without much of an idea, but then slowly it took shape.  At first I was thinking on a lame scale – I could whine about how wasteful and over-priced Swiffer products are.  I don’t really care for chocolate, and people never really get that.

But this is asking me what is it that I can’t stand that everyone else on the planent is into.

Lots of people dislike Wal-mart.  I know I’m not alone in my political ideology, my thoughts on our cultural obsession with instant gratification; lots of us can’t stand someone with an inability to have a sense of humor or even just people who take themselves too seriously.

The other day on Adam Carolla‘s podcast the gang, in honor of April Fool’s, was going over a list of all these stories from The Onion that people believed to be true.  Some of them were so outrageous and so clearly satirical – and yet all kinds of people were so quick to believe these fake news items, and just as quick to make a huge stink about them.  Like the Congressman who believed The Onion article about a new “abortionplex” being built, oh my.  I can’t stand that kind of rush to judgement and freaking out… I’m not the only one in the world who can’t stand that, though.

And don’t even get me started about writing and blogging…

I can’t stand bloggers without a real knack for writing.  Bad sentence structure, no working comprehension of idiomatic expressions, redundant repetition (heh), poor grammar, writing at the level of a grade schooler – and so on! It drives me batty.  I’m not being super critical about a mistake here or there, I mean habitually skill-less writers. But I don’t have to read such blogs and I’m not the Internet’s only snob.

I can’t stand using the letter U instead of the word “you,” samesies on “C” for “see.” I don’t like wacky hard-to-read textspeak at all, actually.  But me, along with every other English Major and the world’s old folks probably can’t stand the text shorthand of the digital age.

So I’m back to square one.  LOUD NOISES.  I’ll stick with it!

 


I Think It Might Be Mold: My Newest Health Theory

Call me crazy (crazy!)… but I think that the root of my recent black hole of ailments could totes be related to mold in my house.

Strike 1: 

This next-door neighbor who moved out over the summer told me her house was full of mold.  (We live in base housing on a USMC base, in Hawaii, by the beach, in really old wooden houses).

She told me she was wicked sick, and that it was all because of mold in her home, and she gave me this whole run for the hills! Seriously, save your life and get outta here! thing and I thought it was kinda overdramatic.

I know, THAT’S MEAN OF ME.

But… I did.  She seemed over the top.  But I didn’t forget about what she said.  Her ordeal, if legit, sounded awful.

 

Strike 2: 

I made the epic mistake of commenting on a super popular blog and then subscribing to the comments.  So now, four hundred times a month, I get to see what others had to say.  (I’m just bitter because the author of the blog NEVER comments back, and all the conversations are one-sided).

Anyways.  This other blogger, Mary from Fibromy-awesome, writes about fibromyalgia and her health sitch.  Seeing that she’s a young lady, a lot of her audience is of the young lady with health issues persuasion.

So the other day, this dude comments on the blog saying that his wife was super sick and they thought she had all this crazy stuff a-going on with her… and turns out it was house mold.

 

Strike 3:

I’m watching The Voice (I know, I’m awful) and this contestant comes on, a nice lady from North Carolina.  Well, on the show they tell you every single person’s sob story and why they should be on the show and they have it sew bad.

So this lady comes on and her sob story is her woeful health issues.  She spent years without a diagnosis, of people telling her she’s bonky… and bam! House mold.

 

So.  When the universe or the good Lord above is trying to tell me something, whatever it is that cumulated these three pieces of mold-related info and mashed ’em together… I decided to follow the hunch and do some investigating.

Well, all this and my dear friend Jenny recently said something really sweet about our upcoming move: Jenny reminded me that this whole move, although sad and stressful in its own right, could likely be the thing that breaks my health-related crap streak!  New docs, new place, new life – it could all lead to the breakthrough I’ve been dying for.

I have this happy optimism in mind as of late…

And then BAM! It all fits together.

Now, I don’t know if you know this about me, but I’m a pretty good detective.  Like, I totally should have been a detective.  I’m so good at figuring stuff out.  Kinda.  If/when not distracted and actually care.

I pump some search terms into the ole compy and start a-searching, and what do you know: EVERY symptom of mine has been linked to mold-related illness, and my house meets a bunch of criteria for being a palace du mold.

Duggs deployed after we moved in, and he’s out of here all day long on weekdays, hence why my exposure level would be through the roof vs. his.

I have ZERO idea if this theory holds any water right now. 

I can’t tell if I’m desperate for something to come together and solve the mystery, or at least lead to me feeling better… or if I’m being delusional and getting off course.

I just want to feel better though.  And I think I’m kinda due for it.  I want to try and get pregnant again sometime soon-ish (no spring chicken, y’all)… and as of now, with the meds I suck down, there is NO way.

I want a good awesome life back.

Perhaps this mold theory could lead to total redemption after we move?  Maybe?

As I investigate I’ll tell y’all what’s going on.  Sadly, other than this new theory of mine, I have zero health-related updates of actual content to report.  I’m still same ole, same ole.  Kinda crappy, kinda okay, making the best of it, taking a crapload of meds, and just dealing.

I kinda really hope there’s mold in here.  Just so I know there’s a light at the end of the tunnel.  That would be wonderful, actually.

 

As always – thanks for reading!! xoxo, hhr

Analog Life Has Been Busy!

I KNOW I’ve been a bloggin’ derelict.  I sure do know that.

Things have been wacky round these parts, though.  (Wackier than usual, given that I am just kinda naturally wack).

please forgive me for not posting in a week by seeing pics of my cute pooch

Here are my excuses for abandoning y’all:

  • I have not been feeling well
  • Working out has slacked, too, not just blogging.
  • Work has been busy – and I love it!
  • Creative writing has been taking precedent over blogging.  Book over blog, yo.
  • Matthew and I have had some awesome good quality time, which is way more fun than being behind the compy.
  • When I have been feeling up to it, we’ve been out and about – not even near the compy.
BOMBSHELL: 
We found out we’re moving soon-ish.  Like, next month-ish.  So that’s had things going crazy too.  So much to get ready, work out, plan for. It’s a crazy nightmare of super stress, actually.  But, we’re excited to start our next adventure… and we’re super sad to leave Hawaii.  It’s a lot of emotion. 

On My Health and Fitness

So, I haven’t been feeling so hot.  Which stinks.  I’ve written recently about my quest to run, and to run longer distances than usual, and to train for like a half-marathon – and one of the things I’ve confessed is the ebb and flow of my workout consistencies.

I have good weeks and bad weeks.  It’s how I’ve rolled for the past year-to-eighteen months.  It just goes like that, and I’ve been trying to break that pattern.

January was great!  But in February, not so hot.  I’ve only gotten in a couple runs a week, and my last run was already like five days ago (and I’m not lacing up my sneaks at this moment, sadly).

I just haven’t been feeling well.

here i am right now. feeling okay (better than yesterday, thank goodness)... but still pretty blah.

Nothing major, just my same ole, same ole.  I’ve tweaked up the meds a bit lately, and have seen some good come of that.  So, hopefully this period of rest is just my body taking care of itself.  Part of my hippie nature is all that “listen to your body” stuff, so I do.

Mine has been telling me to rest.

I tell ya what though: the last run I went on, I killed it!  I didn’t even think I’d make it more than a couple minutes, and it ended up being my FASTEST four-miler ever.  (Well, in recent times kinda ever).   My chest was hurting and I felt just sluggish and heavy in the beginning – during those first two minutes, I was convinced that I was going to do a five minute jog for the day.  But, as I warmed up I just shook it out and felt positively wonderful.

Oh man, even recounting such a fab run has me itching to get out and run.  Tomorrow morning, perhaps!

So, the running has slacked.  I’m bummed, but I’m also okay with it.  I’ve been taking care of the bigger picture.  I know I need to workout and push myself… but with a body like mine, I’ve just learned that when it’s telling me to stay put, it means it.  And well, with how physically ill I’ve been – running just hasn’t been an option.  GI woes (including vomiting lately, which is the pits!!!), tummy pains, back/shoulder muscle pain, overall weakness, and of course my nerve drama.

Valentine’s was super fun.

Duggs treated me to a really fun night out, it was lovely. We grabbed some grub, and we went to Dave and Buster’s to play games.

out to dinner at buca di beppo

the menu had a little blurb on v-day that was cute!

I know what you’re thinking.  The plan sounded kinda ehhh to me too.  Then, we actually got into D&B, and started playing, and it was so so so fun!

If you’ve never been to a D&B, it’s essentially a TGIFriday’s-esque restaurant with a giant arcade attached.  They have all kinds of games, video games, and those driving car games where the little car you sit in tilts and shakes.

Then there are all those games you can play for tickets.  Duggs’ romantical plan was to win me prizes.  And he did!

duggs, holding a prize and all of our tickets

here's a crappy pic of this elvis game i couldn't get enough of.

We had a blast.  I whooped up on some trivia, annihilating anyone that tried to play with us! Duggs killed me in basketball and skeeball, and he won a prize out of one of those stuffed animal claw machines on the first try (and then he gave the prize to an adorable little girl and it was so durn sweet).

me, in the NASCAR racing game. (which i beat duggs on, btw).

duggs is the man at the skeeball

duggs, the claw machine, and the prize he won on the very first try!

Work has been great.  I’ve had some projects going on, I hope the great people I work for are still enjoying my writing.  I think that this month I’ve done some of my very best work yet.  So that’s exciting.  I still have tons to learn, lots of goals for myself.  My boss is great, and I really enjoy working with/for her.  She’s a lot of fun, and she’s just been a great teacher and mentor.  She knows so much about the industry and she’s a good one to be learning under.

So life is good. 

As always, it’s a mixed bag of challenges and awesomeness.  Duggs and I are in this super sappy happy mushy phase, like more than usual (if you can even imagine).  My home life and personal life are so sweet.  And while work is busy, it’s fantastic.  The major stressors of right now are my health and this upcoming move.

It’s hard to embrace the notion of saying good-bye to Hawaii.  It’s impossible in some ways.  I’m going to miss this place so much, I’ve grown far more attached than I thought I could or would.

On the other hand, moving is exciting.  It’s a fresh start, a new world to go check out. I’m excited for the weather… and best of all- FAMILY!  We’re going to live close to family!!!  I cannot wait to see everyone.

True story: after writing about that awesome run I had last week, and how blah my physical fitness has been as of late I totally just did a little mini-workout in between drafting and finalizing this post.  I just had to do some moving and shaking, get some stretching in there.  Not grand, but better than nothing.

Wish me a better week, and that I get to feeling better soon.  I want January back!

I gotta get going… I promise to have some good and fun posts up this week.  Love to you all!  Thanks for reading. 

xoxo, hhr

How a CT Scan ‘Near ‘Bout Killed Me. Seriously!

After you have cancer-schmancer, they’re always going on about annual re-testing, right?  So every now and again I have to go get a CT scan.  Totally routine.  I can’t even tell you how many scans I’ve done in my lifetime, too many to count.  It’s no big deal.

pretty sweet ct scan stock photo

here's the actual machine I was in. crappy snapshot i took with my iphone on my way out the door!

Today was one such routine re-screening CT Scan.  It was up at my favorite pretty pink monolith, Tripler Army Medical Center.  And as you read on, honestly, don’t let this freak experience be a reflection of the good people of TAMC; it was a weird thing and had nothing to do with the medical staff – if anything, they handled it well to keep things from getting really out of hand, and their insanely badass high tech gear swooped in and saved the day.

a weird and terrible snapshot that I took from the car today, you can kinda see the hospital on the hill

First of all:

I should have known today was going to be awful when I met my fancy doppelgänger in the waiting room. 

I never wear metal to CT scans (so I don’t have to change into a gown, or a blue sweatsuit like the gentleman in that stock photo I posted above).  Of course this means I was wearing seven layers of clashing, brightly colored cotton.  The main gist of my outfit being polka dot leggings with a striped baby doll top.  Nice!

In walks this girl, who had the exact same ‘do as me, in the exact same way (messy black crazy hair piled on top of her head).  Wearing capris and a tunic – our silhouttes were exactly the same, same pant length, same billowy top, flip flops.  We looked really similar, except everything of mine that was threadbare, her’s was embellished.  For every friendship bracelet I wore, she had on a Yurman.  I had my usual beatdown Rainbows, she these pretty beaded and metallic sandals.  Full face of make up, gigantor diamond bling ring and (I think) fake eye lashes.

It was so wack – we could have been sisters.  But she was so … fancy!  I wish I would have discretely snapped a pic, sigh!

As soon as Bizzaro-me walked in, I should have taken it as a sign.

I should have, but then a lady bug landed on me.  YES.  In the bowels of TAMC, way way back in radiology, without so much as a window in sight, a ladybug found me.  So I thought the universe was cool with me.   Lady bugs are good luck, duh!

The Part Where I Almost Die, A Couple Times:

To do the CT scan, they have to give you an IV.  They use it for contrast to help the scans show more detail.  I’ve always found this detail of the procedure very annoying.

You should know, I HAVE DREADFUL VEINS.

The average blood draw takes at least three attempts.  A recent visit took seven.  Starting an IV is even worse.  My veins are very very tiny, they roll and move; worst of all – they are scarred, badly.

IV Attempt #1

The kind gentleman puts on the tourniquet.  Ya know that icky-cut-off feeling your hand gets while the tourniquet is on?  I get that feeling.  He goes to stick the needle in, and that dead-hand feeling gets magnified.  He sees the flash (the spurt of blood indicating that he has in fact, struck a vessel), he pulls out the needle.

Mistake: he tries to “float” the cath in.  Bad move.  My veins move too much, floating always hurts and it’s never fruitful.

So anyways, that weird I-can’t-feel-my-hand-feeling magnifies.  He’s removed the tourniquet though, so I don’t understand why the blood flow isn’t returning.  I start to feel “weird.” He notices.

He asks if I’m okay.

I insist I am.

And then… WEIRD FUZZY TUNNEL VISION. FAINTING IS IMMINENT. 

I have had more IV sticks, blood draws, you name it, than one could count: hundreds, literally!  I’ve had hours and hours of tattoo work, surgeries, etc.  I have never ever passed out.  Never!  But today was my day… and I was going down fast.

He had to bust out the vapors. Smelling salts! Ammonia.

I felt like such a swooning damsel circa Scarlett; today Tripler was my Tara.

it probably looked JUST like this

He waved the ammonia under my nose, and things got better.  I honestly have no idea what happened.  It was just so weird.  And I kept repeating that over and over again, “this is so weird.”  I just felt all clammy, shaky, yucky.

He insists that for the second IV attempt, we’ll wait till I’m on the table – so that I’m lying down, so if I pass out again I don’t get hurt.  I was so embarrassed. But I mean, I didn’t want to pass out and fall down.

I’ll admit, during the whole thing – my hand was, well, it was dying.  It was purple and I couldn’t feel it.  It felt like every time your hand “falls asleep” times a million, and nothing I did would get that blood flow back.  I thought I was Captain Hook in the making, Johnny Tremaine (well, he’s just a welded hand… not total loss from elbow down).  I had this whole scenario flash before my eyes in which I was going to lose my hand.  And then the other part was being way too specific about it – wondering, how are they going to fix this? what do they do to get the blood to go back into my hand? how long will I be in the ER? who will take JJ outside? how can I text Duggs to tell him what’s happening if my hand is dying? and so on.

My mind was swimming in the minutia.  But it all happened in a minute or two.

On to attempt on my life #2:

hey where the party at

I move to the procedure room, with the CT machine.  I’m on the table and he goes for IV attempt number two.  Tourniquet.  Needle.  Flash.

Then the dreaded phrase… “Umm, (so-and-so), could you hand me ehhm, that towel? Yeah? Thanks…”

Why is the man starting my IV in need of a towel?

The room I’m in is freezing.  So they’ve bundled me in these blankets.  I’m laying down on this narrow gurney, the one that will slide in and out of the CT machine.  So when he’s starting my IV, I can’t really see what’s going on.  I can feel, but it just feels normal.

So why the towel?

He accidentally punctured an artery. 

IVs = intra-VENOUS.  Vein, not artery.  He went in the wrong vessel, and according to him, “bright red blood was spurting out… spraying in rhythm with your pulse.”

So cool!

Except not when it’s happening to me.

He had to hold pressure for 25 minutes to get it to stop bleeding.  He was so embarrassed.  Poor guy, rough day on the job for him.

Don’t worry, those were the only attempts on my life.  But the fun didn’t stop.

They called in another guy to try and start an IV for the third time.  He missed, of course.  But not without taking his sweet time, flicking and smacking my arms, leaving the tourniquet on for unbearable amounts of time, and sassing me!

I TOLD him not to go where he went.  I KNOW which veins suck… tsk tsk.  Not my fault.

So yeah.  He tried in the exact same spot that attempt #1 happened.  Not only is that slightly uncomfortable (yeah, they literally ripped the bandage off and went rooting around in the same spot, again with the obscene “floating” technique)… but that weird dead hand happened again.

This time I didn’t pass out though.  Close.  I got fuzzy and tunnel vision, but no big dramatic moment.

I still can’t figure it out.  My dad says maybe it was arterial on that side too?  Maybe I had some weird reaction and my B/P just dropped?  I have VERY VERY low blood pressure anyways.  Not eating all day probably didn’t help.  So that makes sense.   And they did go in the same spot twice.

I’m just glad I didn’t pee my pants.

How they redeemed themselves?

A nice lady came in with a fancy portable ultrasound.  She was able to see where my veins were, and she got one started.  In my upper arm, 1.75 centimeters deep!

I know what you’re thinking: that sure sounds freakishly deep for an IV. 

Oh. It is.  She could only find the vein that deep with the special equipment, and she had to inject lidocaine into my arm to go in that deep.  It was absurd.  She was very nice, and honestly, I was just glad to be on with it.

there's the super long cath held up next to my hand afterward. the tech let me take a pic, and we used my hand to compare the size. that was in my arm, eww!

What a WEIRD day.

So finally, after an hour of trying to start an IV – the CT scan was on.

I couldn’t get out of there fast enough!

here i am leaving, getting out of there as fast as i can!

Ultimately, I escaped today’s routine procedure with life and limb.   I ran out of there and hurried home so I could eat.  That kind of fasting is just torture on me.

Figured I would share the ever dramatic and exciting events of my life.  I don’t have any results of the scan yet, but I’m assuming/predicting it will be just fine.  I have nothing to tip me off as to otherwise, and it was just routine.  (I try not to dwell on these kinds of things too much these days, because re-tests of any sort used to send me into a tizzy).

That’s all for today.  Enjoy your weekend everyone!

xoxo, hhr

The Real Me Is Thin, I Swear!

I’ve always been a bit pre-disposed to obsessing over my weight.  It’s still something I struggle with now.  Now as in, age 28 and right now – late Tuesday night as I’m typing this.

Oh oy… should I even post this?  Maybe someone else out there knows how I feel? Maybe you can help me, tell me – how do I change my self identity?  Where is the line between needing to try harder on a physical level and needing to release delusions on an intellectual level? 

My first run in with an eating disorder was in high school.  A couple relapses happened later on, one in college and then another in my mid-20s.   And while I do have a history with ED, one that I’m not afraid to talk about – I really meant this post to center more on identity than obsession.

Looking back, I have no idea why I was so desperate to lose weight in high school. I was skinny as a rail my entire young life, from childhood until I first became sick (age 19).

age 16 rose. (i think!)

Okay, okay – I know that EDs aren’t always about being “skinny” more than they are about control.  My family life was a little off the rails during my high school years.  Through family fighting, financial issues, stress, tension, craziness, etc. – the little world that I could keep a tight leash on was the world of what I ate.  And thus, I closely and obsessively guarded every calorie.

Oh, and… I also began puking.

Our swim coach used to encourage us to puke if we “felt” heavy in the water.  After school, we’d wolf down ten pounds of Burger King and then show up for swim practice.  So yeah, vomming felt better than not vomming.  I think that had more to do with performance and me being a silly teenager, than it EVER did with my actual appearance.  Who eats so much right before hours of intense training? Doh. (My coach never ever called me fat, no one did, I was a size zero).

At 5’8, with a small frame (the whole teeny wrists and teeny neck thing), I carry weight incredibly well.  I’m all legs, I tend to be muscular, and at pretty “high” weights, I still fit in to surprisingly tiny sizes.  In high school I was 5’8 by senior year, and weighed 117 lbs.

I cherished that number: 117.

I came home on a break during college, after I’d quit swimming, and my BFF Mark told me I looked “good” now that I had added a couple pounds.  At his compliment, the others we were with that night all chimed in about how I had reached skeletor status during senior year and that this healthy look, a few pounds heavier, suited me.   It felt good to hear that, but part of me kinda hated it too.

I identify with being skinny.  Super skinny.

The ironic part about me having an eating disorder is how unnecessary it usually is (as far as having to be ana/mia to achieve thinness).  Whilst blessed with a frame that holds weight well, and being tall-ish – I am one of those super high metabolism people.  I always think I’d be great at professional eating because of how much I can throw down my gullet.  It’s a long standing family joke about being prepared if I come visit – Rose can clear out an entire pantry in one sitting.  (really, I kinda can).

It’s relative to point out how much I used to work out.  When I was a hardcore swimmer, we’re talking 20-30 hours a week in the pool.  Maybe more?  Lifeguarding could be very active too.  I did dance in middle and high school, track, lifting.  All I did was burn calories.

Then, I got sick.  At age 19, my sophomore year of college, I went into the hospital for an emergency appendectomy.  It was then that I was diagnosed with Crohn’s disease.  Treatment with steroids began, and I honestly don’t think I’ve looked the same since.

During that year my GI tract worsened and worsened.  I became super duper ill, landing in the hospital for 10-ish days in the spring, and having to move back home for a few weeks after that. I had a MAJOR surgery on April 17, 2003  – a small bowel resection.

I was on a super high dose of IV steroids all during my hospital stay.  I would end up spending almost 18 months on some form of oral or IV steroid throughout this time.

I ballooned.

I swelled.

This is when I reached my all-time high weight.  In the hospital, I was in the 160s.  Afterwards, I was still damn near close.

My clothes didn’t fit.  My friends called me “Drew Barrymore face.”  It was pretty crappy.  But, I had escaped the whole ordeal in far better shape than statistics would have implied (I had a full bowel obstruction and I didn’t have to get an ostomy of any kind, THANK GOD).

drew, who is gorgeous. but friends can be mean!

I was focusing on getting better.  I had a lot going on – college, my family (my parents were divorcing), all my extra curriculars, and my health.  I wasn’t so worried about my size, I knew that it was temporary.

Besides, in my mind I was still skinny.  The real me IS thin.  Right?  This heavier me was only because of the steroids.  I knew that, and I assumed everyone knew that. 

I worked the weight off, the old fashioned way.  I was exercising and eating okay.  A year later I was diagnosed with cancer and up went the steroids again.  This time, I got to be bald too. Great!

(side note – i remember running in a 5k right before i was DX’ed, and i had a really slow time.  i couldn’t figure out why my body was all wack.  it’s totes because i had lymphoma, stage III.  oopsies!  but you see, i was active in between being super duper sick).

When you have cancer, you don’t spend so much time whining about your looks, ya know? You just deal with it. Living > Vanity.

And on and on it goes… when I finally am able to get into a way of life that’s free of meds, and medical complications, and it’s just me – I’m thin.

2007: probably about 130. a very natural and low maintenance weight for me! still lots of working out, running. gymming it up, protein shakes, etc. i was in good shape in 07/08!

So, I just continue to see myself as a thin person in general.  In 2009 I weighed as little as 119lbs.  I was so close to my high school weight, eight years later!  I loved the way I looked.  And I ate like a beast.  I literally had ice cream sundaes every night.  Drive-thru meals.  I was awful (I blame nursing school stress).

nyc in 2009... (me = on the left).

But that’s just how my body can work.  When healthy, I’m a super active person.  Bouncing around from here to there, and I just burn, burn, burn.

The problem is that, in adulthood, I probably have an average weight of somewhere in the 130s- but I only base my self understanding of my appearance based on the best, healthiest years.  (I’m a real optimist, huh? LOL).

So, thus… there’s this crack in my self-image and how others perceive me.  Or rather, my self image vs. my reality.

In my brain I am a skinny little thing, in real life, I think others see me differently.  I’m scared to know the truth.  But I’m tired of feeling like an idiot.  The way people treat me now, it speaks volumes to me about how I’m seen.

I’m not sure what words to use exactly.  And I know now more than ever there’s all kinds of dramz over size identifiers; one gal’s chubby is another gal’s thin, healthy is healthy and that’s all that matters, I shouldn’t care about size.  But as “true” as I know all of this to be (I mean, I’m a licensed RN and I’ve been a serious athlete for more years than not: I know a thing or two about nutrition, health, weight, etc.) I do care about size in many ways.

People don’t make “skinny” or “little” comments towards me.  When you’ve grown accustomed to being referred to as one way, you learn to like it.  To own it.  I’ve been the brunt of plenty of skinny-hating and skinny bashing.  I’ve had circulation and nerve issues from being too bony (my butt bone used to cut off the circulation to my legs if I sat for too long – skinny girl risk!)

But now, the past 18 months have been the heaviest of my life (save for when I had the bowel surgery in ’03).

  • I got married – comfort gain!
  • I moved to Hawaii – epic local food gain!
  • Quit smoking.  big gain.
  • Then got knocked up.
  • and then, after the MC, I was put on meds that cause weight gain (Lyrica, amongst others). I’v been on meds for more than a year now.

In real life, I’m not really fitting into my entire (and amazing) size 2-4 wardrobe.  In real life, my face looks round, my legs thick.

In my brain though: I’m still a svelte ballerina!

A reality check came not too long ago.  I made a joke about wanting to be a ballerina, actually, and I was shut down.  On the premise that ballerinas have super strict body standards, it was implied that I could not meet such criteria. OUCH.   That one really stung.

I’m accepting and trying to understand: Others don’t see me the way I think of myself. 

And then when I do this pleading, this whole no really, I used to be skinny and now there’s a situational reason for why I’m not thing, they just smile and nod.  They don’t believe me!  People who know me from Hawaii, they’ve never known the “skinny” Rose in real life.  They’ve only seen her in photos.   They probably think I’m crazy and delusional.

And PLEASE, don’t go get up in arms with me.  I know that I am not “fat.”  I may be bordering on overweight based on BMI.  But if you take my muscle % into consideration, I know I’m not.

I don’t think I’m fat.  I’m not mocking the plight of others to lose weight.

Actually, I’m having a dreadfully difficult time losing weight. So it’s my plight too, now. If anything, I’m claiming solidarity in the struggle.

***

But I don’t feel like myself.  And well, I’m starting to become really embarrassed over my appearance.  For someone pretty outgoing like me, this is hard.  Very hard. I grew up a swimmer and a beach guard; to say I lived in bathing suits is an understatement.  Now, I feel self conscious.  I find myself layering.  Wearing pants when it’s hot out.  And so on.

I don’t feel comfortable in my own skin (and I know I’ve griped about this before).

It scares me – how much of this is legit?  How much is that old ED-mentality coming back in?  And because I have a history of eating disorder, if I do have a valid point right now – will people not see that and just lump me in as irrational-due-to-ED?

4th of july in 2009 on left - super sunday (a few days ago) feb 2012, on right . i know the pic on the right is hard to see, but those are the same shorts. just not so well fitting these days.

I like opening up about this, venting here.  I also worry about how this post will be perceived.  Will you see me as vapid? Bratty? Someone who clearly doesn’t have real problems?

If this is the kind of stuff I worry about, yeah, by comparison my life is great.  I already know my life is great though, and I try to be super grateful for all the blessings I do have.

Perhaps in an effort to illuminate my frustration, I’ll add: I take really good care of my body these days.  My stress levels are at an all-time low.  I’m laid back and breezy.  I run, do yoga, eat well.  I take care of myself and I do so love myself – in a good, healthy way.  I hardly ever drink booze.  No drugs.  Lots of stretching and core work, I play outside.

SIGH.

I guess I should actually see this as an epic thank you letter.  I am glad that this is the worst of what’s bothering me right now.

Oh, and before you can suggest that I “talk to someone” about it, I already do.  She says that I do have a ballerina body.  But I think she’s just being nice.  Hahaha.  She doesn’t really seem to validate my concerns about my appearance, and she thinks that I’m hard on myself.

I know for a fact though, that a modeling agency would tell me to lose 30 lbs.  ON the island of Manhattan, I’d be “plus size.”  Getting past your personal opinions on size labels, and who should call what to who…. my point is that, it’s just DIFFERENT for me.

What I am now, doesn’t feel like what I’m used to being. 

Maybe it’s a phase.  A little slump in my pretty rad efforts to stay healthy and workout and be fit.  Maybe I want to see results come in faster than they are, and that’s a why I gripe?

 

So engage me here – seriously, if you’re reading this.  Actually comment.  Have a conversation with me.

I need you to tell me I’m crazy!  Or not crazy?  I don’t know which one is better here. Be brave and you tell me.

  • Do you have any hang-ups like this?
  • Some aspect of self-identifying that you cling to, while everyone around you long stopped seeing you that way?
  • Or are you trying to escape the identifier of your younger days, and it won’t leave you be?
  • Are you slightly delusional about anything?
  • Body hang-ups?
  • Size labeling makes you sad, or happy or what?

I know I can’t be the only one who thinks about this kinda stuff or has a hard time.

It was recently suggested to me that perhaps my problem is that it’s “my age.”  

  • So, if you’re almost thirty *shudders at typing that* does this apply to you too?
  • Is it all over for us now, or what?

I’m sorry for yet another self absorbed blog.  I was just feeling all crappy about this, and down on myself.  This is something really bothering me right now.  In an effort to be honest, and present the full picture – I feel like I gotta sometimes post about the doubt, the hang ups, the weaknesses, I gotta be selfish or weird, sometimes.

I do blow a lot of rainbows out my bottom.  I know that is true.  And my rainbows are real, too.  I love optimism, perkiness, happiness.  But even I know that 100% HAPPY HAPPY HAPPY isn’t realistic.

 

If you read this, you’re a REAL GEM.  I love you! Really!

Now. Answer my questions and talk at me!!!!

as always, thanks for reading!! xoxo, hhr

ears to heart, heart back to ears. repeat.

One evening not so long ago I was listening to “This American Life” while jogging.  At the end of my hour-long run, the podcast was ending as I was super close to home, and the closing song came on…

“if the kids .. are united .. they will never .. be divided!”

The punk rock song (by Sham 69) went from the ear buds past my hearing faculties and just straight to my heart.  My legs started pumping, sprinting me up the hill, my brain took me through this super vivid flashback- thinking of being a young sweaty middle schooler, at a 7 Seconds show with some friends.  7 Seconds played their cover of If The Kids Are United, and I remember feeling so empowered.

I was a kid.  We were united.  I thought we could take on the universe.  My fists were pumping (and not in the Jersey Shore kinda way), and I just felt that the couple hundred of us huddled into some crappy Daytona dive venue, we could change the world.

random mosh pit pic i found on a google image search

Back in 2012 my jog wrapped up, the song was over and I got to thinking: my heart and hearing connection has always been a close one when it comes to music.

Some of my earliest memories are of my dad’s mix tapes.  My dad’s a total mix tape genius, oh man.  I grew up in this world of themed tapes for every mood.  Bruce Springstein by the pool, Wham! when we’re kicking off a road trip.

As I got older he introduced me to his most precious gems: The Beatles, Simon and Garfunkle. Concert soundtracks for Woodstock, No Nukes; all these amazing 70’s artists.  We’d drive around, because listening to music is best done in the car, and he’d explain the feelings each song brought to him.

me and my dad, a couple years ago

I best understand my father’s pain and sadness during my parents’ divorce via “Only Living Boy In New York.”

I have to compose myself here, literally, tearfully wincing as I’m writing.  It’s that emotional for me.

For every event there is a song.  A life-long soundtrack that encompasses all genres, envelopes all emotions.

From my ears, to my heart – music goes. 

When I started to find my own music: Sublime, Alanis Morissette, NOFX, Blink-182 – they spoke to me too.  I would sit in my room, “doing homework,” just listening to my CDs on repeat.  93KRO was the alt rock station that existed when I was in middle school in Daytona Beach – I’d listen nonstop, letting them teach me about the Cranberries, Poe, the Toadies, etc.  I remember getting ready for school every morning to “Dude Ranch,” putting my blue mascara on.  Yeah!

seventeen year old me

And high school? College?  Oh man.  As punk gave way to emo, I went in head over heels.  I was a chest-pounding misty-eyed emo dreamster, speaking to my closest friends strictly in song lyrics.  Seriously, we’d communicate in lyrics.  Some of us still can do it.  Crying at the Dashboard concert kinda stuff.  Sprinkled in with some pothead memories, a lot of Dispatch and Ben Harper, of course.

my friend in green and in white = me, gettin funky at a dmb concert years and years ago

So as 28-year-old me is uphill jogging and I’m reflecting on this ear-to-heart beeline, I ponder: does it go both ways? 

For any of y’all not in the loop: I currently suffer from a condition my doctors call “peripheral neuralgia,” or “atypical facial pain.”  For the past 12 months my right ear has been hurting so badly.  The pain radiates from my ear, to my cheekbone, forehead, jaw … and it’s so debilitating that I can’t even think.  I’ve been on a whole mess of meds, treatment attempt after treatment attempt has failed, and it sucks.  I just want my ear to stop hurting.  The meds I’m on hold me for the time being, with a limited amount of breakthrough pain, but they aren’t a cure.  I can’t conceive while on these meds, they have side effects that I don’t like.

total fail - didn't work.

icing my neck on a day my ear was hurting real bad!

I feel broken.  It’s infuriating, depressing, frustrating, and sad that we (my amazing team of doctors and I) can’t get to the bottom of this.  I’ve had better success with two kinds of cancer.

My ear hurts every day.   Just the right ear.

And well, the little things hurt.  When a baby cries, when a mic reverbs, a whistle, a horn, my neighbor’s super loud and obnoxious bass – all of these sounds and noises, they HURT me.  Physically.  I hate it.  I have to wear an ear plug in my right ear a lot of the time.  I always have to wear it at church, it’s way too loud in there.

The ear pain started last January (2011), in the aftermath of the miscarriage I had. The stress of the miscarriage did a lot of damage to my body in general (the grotesquely mismanaged miscarriage, during which I bled heavily for 15 days, for a total of 30 when all was said and done).  I have a genetic blood disease, porphyria, and stressors take a harder hit on me than they do your average young and healthy person.

But maybe there’s a more simple answer: that heart-to-ear expressway.

Losing that baby was so sad.

Sad is such a lacking word.

I wanted to be a mother.  I was so happy to be pregnant.  I was so excited to have a baby.  Overjoyed, blissful, grateful, peppy.  It was the best I’ve ever felt in my life.  And then… it was taken away from me, in a rather undignified way, a drawn-out, painful, way.

I’ve experienced sadness and loss in my life – of course, who hasn’t? – and I can honestly say the greatest heartache I’ve ever suffered was losing that baby.

And it surprised me with how terribly sad it was.  I had no idea that a miscarriage was that hard to go through.

From my heart, back to my ears, so the connection goes? 

The idea is intriguing.

I mean, there are other things that I know to be true – I have musculo/skeletal damage on my right side, in the nerve path of my ear/face.  I have nerve damage. This isn’t the first time I’ve had this one-sided ear ache, it’s just the only time it hasn’t gone away after a week or so.

As far as mending my heart, I think I’ve come a long way.  I was never angry about the miscarriage, no one is to blame.   I was always just sad.

If anything, the event was part of a path the reignited my faith and brought me even closer to God.  It brought Duggs and I closer together.  I’ve been to therapists of all kinds – regular, neuro-psych, pain psych, etc., and they all say I’m doing okay, that I’m happy and well adjusted, doing the best I could be doing, given the circumstance.   In the past year, I’ve emotionally come a long way.

A great deal of heart healing has gone on. 

So am I just waiting for the ear to catch up?

In an effort to tackle the problem from the other side, I’ve jumped back into music with a new-found passion.  I don’t spend that much time in the car these days, and I’ve gotten kinda addicted to TV, so re-immersing in my jams has felt good.  I totally have Spotify to thank, I’m so obsessed.  And running; running again gives me reason to rock out.

cake will be here in hawaii later this month - i think i should go on therapeutic grounds!

So this inner express lane from my ears to my heart, it feels roundtrip.  Maybe the way to cure my facial pain isn’t through Lyrica, but lyrics? Ha. Do you like what I did there? Lyrica is one of my meds.  That’s funny.

If anything, perhaps soaking myself in my most favorite of tunes will be a way to help me feel better in general and/or distract me from the pain?  Maybe my heart has more healing to do than I’ve realized?

The connection feels real to me though: ears to heart, and back again.

….

As always, thanks for reading!!  Love, happy hippie rose