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!

a totally weird and silly pic from that night

i did too much of this

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 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!

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.

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, 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.  

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!

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.

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.

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.

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!

I ran my first marathon this year, 26.2 miles!

Helping Sandy Relief in NYC last month.

My husband + me, smooching from a deer stand.

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

Mold, Maggots, Moving, Medical Maladies and Miscellaneous Misadventures.

Man oh man! (is that enough alliteration for ya or what? wow! that’s impressive, even for me).

I actually drafted this post back before we even left Hawaii, and just didn’t have time to polish it, upload the pics and get it online.  But for the sake of continuity and explaining a little bit of what the heck happened to me (when I fell off the face of the blogging earth), I figured I’d go ahead with it anyways.  So keep in mind this here blog wraps up our last days and weeks in the beautiful tropical paradise of Oahu, a place I’ll always love and already miss dearly.

What happened to the rest of April 2012?  We were overcome…

Mold, Maggots, Moving, Medical Maladies, and even more Misc. Misadventures!

I really really thought I could keep up with the 30 Days of Blogging Honesty Challenge. I really really did… but clearly I did not.  (My last day was day 12, that’s hardly a noble effort.  Sheesh!)  And I’m bummed, and disappointed in myself. I’ll admit, sometimes I have a hard time finishing through with projects.  And I try really hard to manually get into my brain and change my ways, try to do better- but I’m human, and I long ago abandoned my perfectionist ways and the obscene pressure I used to put on myself to do everything to the letter; I’ve learned when to walk away, or ask for help, or admit I’m not hacking it. So as far as blogging diligently these days?  Keeping up the 30 Days challenge?  I’m so not hacking it.

I did not hack it!

Perhaps it’s a case of bad timing?  Most likely a case of taking on WAY TOO much at a time when I knew I shouldn’t have.  When real life gets super duper busy and something has to go – personal blogging and other just-for-fun hobbies have to get cut before working, or eating, or cleaning do.  So with everything we had juggling, the happy hippie rosieness I add to the Interwebs had to take a backseat (sadly).

A big thanks to the gang that let me play along for the meager days I did, and to all of those who read the entries and had fun with it all.  Here‘s where I found out about it all, over at the fab Tom Baker‘s blog. Maybe next year I’ll try again, and in the very least I have a lot of new blogs that I subscribe to now.  So that’s fun!

Before I get into the super gross stuff, I had better point out – April 17th was our SECOND WEDDING ANNIVERSARY!

april 17, 2010 – the best day of my life

So Duggs took the day off, and so did I, and we both stepped away from the compies and the Interwebs and celebrated by spending a lovely, peaceful day together.  We had some lofty and fancy plans, and in the end just opted to relax and be together.  My Dad and Step-mom did gift us the edible arrangement (yummy!) and we got some very nice cards in the mail too.  So- for all the anny love, THANKS Y’ALL!

thanks viper and anna, it was soooo yummy!

We had a great anniversary, and we’re so very blessed to have spent two wonderful years of marriage.  Here’s to many, many, MANY more to come!!

Now,

Onto the gross:

MOLD

looks appetizing, yeah?

They really really did find mold in our house on base.  Oodles of it, gross stuff.  All kinds of colors and colonies.  At first they tried to lie about it and tell us it was dust.  But I’m no fool, no sir-ee, and I pushed and insisted to have them act as if it were mold.

What came of it?  A couple measly attempts to clean out our A/C ducts and not much else.  The sad part is that a new family will move into that very same house (they may already be in there now) and who even knows what can and will happen to them and their health.

a moldy air vent, lovely!

duggs has way better pics, way more documentation… but there are the ones i snapped the day the housing guy told me that our vents were just “dusty” and he didn’t see any mold.

Yes, they’re tearing the street of houses down sometime in 2013 and building fresh brand new ones.  But a year or so is still a long time to dwell in a poisonous death trap.  And who knows what other houses are full of what other kinds of spores and methods of slow respiratory suicide?

Ugh.

I’m really hoping that the longer I’m away from Bordelon Loop, the better I’ll feel.  I want my lungs to get rid of the gunk and the nastiness that’s embedded into my body.  I truly hope that both Duggs and I see some restored health in the near future.  What if all my face pain and ear ache troubles were mold caused from the jump?!  Getting a “cure” out of moving would be utterly epic.

MAGGOTS 

This wasn’t my first encounter with household maggots.  Sad, but true,  Exactly a year ago they plagued me and had me on the edge of my sanity.  There’s just something about maggots squirming all over my home that just horrifies me.  They’re just SO. DAMN. GROSS.

Gross = such a severe understatement.  I hate them!!

eww. eww. eww. eww. EWW!!!!

Now, we didn’t have a massive abundance of maggots crawling all over the place. It’s not like they were covering the walls and ceilings, etc.  But every day we’d find them… four, six, ten at a time and it seemed like each day there would more.  Always congregating in the same area of the house, but I was never able to find an exact source.  And talk about hard to kill. They so difficult.  You have to use bleach (which we were out of) or you have to literally squish them so hard they pop to death.

HOW EFFING NASTY IS THAT?!?!?!

If you just threw up in your mouth a little bit and never want to even ever read my blog again, I don’t even blame you.  That idea is so nasty to me I even hate myself for just typing it out.  Now imagine that I had to live it.

maggot vid of the super yucky crawly guy!

Last year when the maggots came, I prepped this whole crazy blog post about it all, complete with lots o’ pics.  And then, I decided not to post it.  With the use of bleach and hard work, sleepless nights and Carly’s steam cleaner I was able to combat the nasty crawlers in a few days… and well, I had just started my tie dye ‘biz and I was worried no one would want to buy a shirt from the maggot house.  I mean, rightfully so.  And Duggs hates people thinking that he has me living in squalor, it’s embarrassing.

from the 2011 invasion – they came in by the front door.

okay, so looking at this (another ’11 pic) i remember that last year’s batch was actually way way worse than this year’s. the 2011 influx just scarred me so badly, i’m now a huge weenie when it comes to maggots and i’m totally fearful and icked out and just can’t hardly handle them.

last year i had bleach on hand. come 2012, my hippie green ways have so evolved, i didn’t have any available.

same species this year and last, that’s for sure though

last year, i was all no-nonsense. i needed to re-find my old 2011 badassery for this year’s dilemma. i mean, actually… i was kinda badass in my own right after the first couple days. i got over the initial fear and started going rambo on those little bastards. i’m not all shrinking violet, ya know.

look at how tough i was a year ago (and tan, jeals!!), i’m gonna be this gal again!

But we keep an immaculately clean home, that’s just the tropics for you!  It has nothing to do with our cleanliness or hygiene, or the caliber of provider my wonderful husband is… it’s just Hawaii!

MOVING! 

At time of press I’m already in the great state of New York.  But managing such a big move isn’t just a hop, skip, and jump.  So during the last half of April (especially) our lives were really up-ended as the moving date got closer and we had more to do.

my final look at our pink house on the hawaiian hill – so many mixed emotions, so much joy and some really challenging times all went down within these walls. i’m excited to move forward because that’s the direction of life. but i’ll always have a special place for the first home i shared with my husband and all the experiences we shared there.

Shipping the dog = getting his health certified, shots and records updated, making sure his crate is the right kind and all good to go.

Shipping the car = special letter from Honda since it’s a leased vehicle, getting it all cleaned and properly prepped to go, not to mention having to turn it in so we didn’t even have a whip to get ourselves around.

Shipping the goods = movers came and packed, so at least that part is taken care of.  But there’s still lots to plan and accomodate, lots of organizing to do.

there’s all of our worldly stuffs, all packed and crated up

good bye goods, see you in ny!

Prepping the house = painting, cleaning, fixing, mowing.  Just getting the mold, maggot, rat, ant, spider, infested death trap into suitable condition to turn in the keys was such a joke.  The place was such a mess! And yet they had us spit shine the whole place top to bottom as if we were turning over the taj mahal. sheesh!

duggs, the wonderful good man he is, did most of the painting

when i say “most,” i mean like 95% of the painting… i helped do the first coat in a room and a half… he did all the rest + all the final coats on his own

i don’t think duggs slept for two weeks straight with all the prep we had to do to move

Taking care of getting all my meds refilled and stocked, getting in all my last appointments and securing records.  It’s this kind of stuff that you don’t even think of!

what’s a goodbye tour of o’ahu without a trip to good ole tripler army hospital? hahaha. oh, of course.

duggs and i at the pharmacy together, a task we’ve done so many, many times together… and this one was our last

Not to mention planning work, finances, arrangements, figuring out where to go and how we’re getting each step of the way… etc. etc. etc.  There’s a lot that goes into such a move.  Especially considering that Duggs is transitioning from military to civilian.  Not only are we changing continents (kinda) and location, climate, and timezone – but our lifestyle is totally changing in so many ways too!

Duggs had epic amounts of paperwork to do, signatures to get and all kinds of running around to make sure we were all squared away.  Once the packers came and nabbed all of our stuffs, we moved to a hotel 30-40mins away from base (based on traffic) and that’s when things got even wackier!

Limited and low quality Internet, limited access to anything, me and pooch living in a tiny room.  And oh the horror… no more cable! No DVR! I can’t even continue discussing the hardships I endured.

(I’m being sarcastic.  Other than being in a nosy, weird part of town with the pool closed for repairs and the Internet super craptastic, it was perfectly fine.  The staff was lovely and I had a nice enough time.  And pooch-friendly!  Who can ask for more?!?!).

But seriously, what’s a move if nothing goes wrong and all goes smooth?

-Duggs got in a fender-bender, won’t get into the details here – but as it all worked out, we REALLY lucked out on all the technicalities of that one, although for a day or so it was a huge source of stress.  Thank God no one was hurt!

-The shipping company didn’t take the car the first time we went to go ship it – some mess about having wheel locks on and not having the key available to take them off (the key got packed when the movers packed up the house, oopsies!).   So figuring that out made us sweat a bit.  A lot a bit.

adios honda! see ya in new jersey, sooner hopefully than later!

ahh, the thrills and good times we had here.

-The prescriptions for my final day of med pick ups were all messed up, and thankfully we were able to sort it out, but the day we left we spent three hours un-doing that whole mess.    Driving around to the pharmacy and the doctor’s, cabs and all kinds of stuff.  Oy! Mess!

-We had so much packing to do, we were cramming it all into our bags right up until the last minute possible…

jj standing guard over all the crazy mess that we had to pack up. yikes! (we unpacked it all, so that we could re-do the most efficient packing job possible).

When Duggs went to give JJ a quick bath, and the hotel room’s bathroom door malfunctioned, and locked JJ in the bathroom!  Thankfully the tub wasn’t plugged (although the water was running, and it was such an awful waste).  We had maintenance come as quickly as they could and try to break open the door, but since something was broken with the knob and lock, it took them like 15 minutes to bust him out.  Poor guy was so scared – and poor us, so stressed having all this go on while our flight count-down was ticking right in our face.  We didn’t have time to burn!

the crazy bathroom door that self-locked and trapped poor jayjers in there all alone

if you look to the left you can see the pooch in there. i layed on the floor and he put his nose under the crack and sniffed me, gave me little smooches. he gets so scared so easily, i had to go wait with him and stand a vigil.

the maintenance guy who came to free our pooch!

I’m sure more went wrong, it felt like at the time that everything was going out of control.  But then we made it… we made it to the gate, we boarded the plane (the last ones on), JJ made it too, we all got to NY safe and sound and in one piece and well, that’s all we could even ask for.

Moving can be such a colossal pain in the bum, but starting a new chapter of life is such an amazing experience.  It’s so cool to get to start something fresh with Duggs and set out into together and see what will come and figure our way together.

Medical Maladies

Sickness. Yes, I have been violently ill.  AGAIN.  This time it was a stomach bug.  Luckily for me, it hit me the hardest right on moving day and I was rendered useless while trying to pack our house and get everything together to move from Hawaii to New York.  Perfect timing, right? I was vomming and so sick to my stomach I could hardly move.  THANK GOD it has let up the past few days and I’m cautiously optimistic about referring to myself as “feeling better.”  (I wrote this part from the hotel in Hawaii, on one of the last days of April – at the time of press I can tell you that my stomach bug totally cleared up and I’m feeling much better on that front, but of course since traveling to NY I’ve picked up new germs, a new cold, and I’ve had a dreadful sore throat and head aches!  It’s just been back to back to back illness for me, it’s been awful!  I’ve had a “cold” or a “bug” almost nonstop the past two month.  What’s up with that?!?!)

my dear sweet neighbor made me this super delicious soup earlier in the month when i had a dreadful respiratory infection. how kind of her! thank you amber, i’ll miss having such a sweetheart neighbor!!

Back in April when I had the tummy bug, oh man there were some awful awful days though… like, I don’t remember feeling that ill during chemo, honestly. HUGE thank you to everyone who checked in and sent love + prayers + well wishes.  Many, many thanks!

my first attempt at “food” after a couple fierce days of stomach bug

Besides my health, life has just been nutty!

Misc. Misadventures! 

this is so my life, yo. (image: http://www.anthony-thomas.com/shop/boxed-chocolates/fancy-mixed-nuts-14-oz-/prod_23.html)

Work is nuts.  Life is nuts.  Leaving Hawaii and the USMC and our lives as we knew it and starting totally anew is nuts…

But it’s nutty in a hectic way as well as a great, wonderful way.  I’ve taken lots of pics during our trip so far and I’m excited to share with y’all the wonderful time we’ve had so far.  I’ve been the recipient of so many well wishes and love, and it’s been such a delight to have a loud and great cheering section, encouraging us along every step of the way.  On some of our bonkiest, most stressful days – getting an uplifting and happy message just meant so much.

The zany crazy days of April are behind us now, and embracing this new life has been an activity sought with zeal.

I’ll wrap up this April Hawaiian catch up by saying this…

Spending our last Hawaiian day in a busy blur, we had so much going on.  I took a minute to chronicle (because of course, I love chronicling as much as I can) and here’s what I pecked out right before we had to pack up the compy:

What can go wrong, will go wrong. Murphy’s Law, right?  It’s so all over this move.  But as it does, Duggs and i just keep repeating our marriage’s mantra: we can get through anything together.  And really, we can. Done: car is shipped. Meds have been (finally) picked up after an uber crazy pharmacy-Tripler ordeal of running around. Rental car is donezo and out of our hands.  House is packed up.  Snacks and sudoku have been purchased.  Movies have been downloaded to mobile devices.  All we have to-do now is finish packing up this hotel room and we’re outta here.  It feels like a lot to do, but after all we’ve been through in the past few weeks – painting, sickness, the maggots, the mold, paperwork hiccups, so much running around, pooch getting a boo boo on his arm – we’ve been through it all together, as we can anything.

And as we get through it, we come out with smiles and funny stories to tell.  So long as I have that Duggs to hold my hand, I’m not intimidated by all this wackiness and manic messiness that’s been our lives as of late.

So now, I’m off to shove some clothes into my suitcases and make that flight!

after saying such sweet sappiness, i had to post a couple pics of me and my duggs being mushy… so here are some that i’ve never posted online, they happen to be from st. patty’s

oh i love this man with all my heart!

…

The way it all worked out we’ve been able to go on a New York state road trip and spend some much-needed time with family and friends.  Our tour de loved ones has thus far been amazing, and we still haven’t even made it to the Buffalo-area yet – where there’s so much family left to reunite with!

a strange mid-sentence snapshot of me and the duggs being lunatics in the rental whip, riding around new york! stand by for more of our moving antics to come…

As always, thanks for reading!  I’m glad to have made this big ole long post and hopefully it’s been a way to catch everyone up and give somewhat of an explanation for my weeks of no-showing.

We’re still on the road and in the midst of the moving process – so I’m not sure when I’ll be in a place to start posting regularly again.  But I sure do hope its soon.  I love working on HHR and I so do love each and every reader who takes the time to follow my ramblings and see what’s been going on and what we’ve been up to.

When I sign off each post with “thanks for reading,” please know that I truly mean it.  So thanks for standing by and thanks for your patience with all the shuffling we’ve been experiencing lately.

And really: thanks for reading!! 

xoxo, hhr

what a day

December 19, 2011 : What a Day. 

• I get offered a job, one that I really wanted; a writing job. I accepted and I start tomorrow. I’m elated!  I was so nervous all weekend, so I’m also relieved  as well. whew.

• Duggs got some really great news today, having to do with some ongoing work stuff.  I’m happy for him.  He works so hard, always.

• We are done with all of our Christmas gifts that had to be mailed out – some nine or ten packages and parcels altogether, so many!!  It’s a HUGE relief that we got it all done and with so much pizazz. We really went the extra mile, It literally took at least 80 man hours to get done what we did. I’m totally going to get “glitter lung,” or some other ailment from excessive crafting.   And I can’t post pics yet – I don’t want to ruin anyone’s surprise!

okay, here's ONE sneak peek - that's it!

• In order to get it all done, we had to stay up all night.  Now my brain is a pile of mush and I can hardly keep my eyes open.  I have to go to sleep in a minute.

• One year ago today, we lost our baby-to-be; we just realized it was the 19th, and even though it’s been a whole year – I’m still sad.  I still miss being pregnant and wish that I had a baby bouncing on my knee right now.

duggs was deployed, so to help him understand what i was going through, i took a lot of photos - here's me on dec 19, 2010, quite sad and upset, and not feeling well.

Whew, what a day.  Mostly, I’m super thankful and stoked.  And for the Cletus thing (Cletus-the-fetus) I’m reflective, sad (yes, and I think it’s okay to be sad) and I’m trusting God with the big picture.  We’re playing the long game.

So I’m remembering today, how I was to and see fit.

But as for tomorrow and the new year ahead of us: it’s full speed ahead!!  I’m so excited for 2012.  Duggs and I have decided that it’s going to be our year, we’re just gonna do big, great, things next year, all increasing our happiness, bettering ourselves, and doing that whole shooting-for-the-stars thing.

Yeah, wow.

What a day !

 

as always, thank you for reading my blog here! xoxo, hhr

 

post-thanksgiving catch up

Hi everyone!!  I’m here, I’m doing okay.  Let me catch everyone up on the holidays, my health, and just my overall happyhippiness.

I’ve missed you dear bloggy-readers, (all seven of you, ha).  To those who’ve missed me and checked in on me, thank you.  And to those who just read, I’m thankful for you too!  (((hugs)))

Today’s post is a long one, but I think it’s a real gem.  Enjoy!

Post-Thanksgiving Catch Up

Thanksgiving!

We had a lovely Thanksgiving.

Duggs and I woke up, put on the parade and got to cooking, baking and smooching.  Yeah. We smooch a lot. I love watching the parade, just so I can get all annoyed at it’s cheesiness and weirdness, it’s so so so commercialized it’s just like a two mile long inflatable advertisement.  Bee tee dubs, when I just wrote advertisement, I totes pronounced it the Brirtish way in my head, so please do so while reading.  It’s much more sophisticated.  Ad-vert-is-ment.

Moving along…  So ole Duggs and I baked and cooked, and it was fun.  Christmas music was playing and I was just so happy.  I LOVE the holidays.  I miss my family, but to celebrate the entire holiday season with my husband: amazing!! what a gift!!

We spent the day with some great friends, here on base.  The Tanners (of course, we heart the Tanners so hard!), our friend Chiffon came and our friend Dana. So six people total.  Luckily, we cooked for about thirty, so the leftovers abounded! Score!

me and ole stinky duggs at thanksgiving dinner and he made a weird face to ruin my photo. thanks a lot duggs.

duggs and his man-friend, jed, at turkey day

the spread of amazing food. such a bountiful feast.

ashley was kind enough to purchase special doggie thanksgiving dinners for the pooches. they went totally nuts. it was great!

dana and chiffon were our other guests. this isn't a great photo bc chiffon isn't looking, but i didn't want to leave them out of my recap!

On Being Thankful

I have so much to be thankful for now. It would take up shifty-five blog posts to even list it all.  I try so hard to focus my daily prayer on thanksgiving year-round.  This season is a great opportunity to reflect on our blessings, to immerse in gratefulness for what we already have.

Also coming along with this season: the temptation to want want want, to shop, to desire things.  The temptation to become materialistic is immense.   In order to shop for others, we see many other things we want.  I’m going to write another blog about gift-giving and my process and etc.

But to summarize the concept of being thankful on Thanksgiving: I am.

• Thank you God, for life, for your Grace, for everything.
• Thank you family, thank you friends, for your love.  I need you all so much.
• Thank you kind strangers, the little random angels that were at the right place at the right time to just get me through.
• Thank you people who have allowed me to learn, facilitated the improvement of my health, offered me comfort.
• Thank you United States Marine Corps for training my husband, bringing hom home safely, for putting a roof over our heads and food in our bellies, for taking care of our medical needs.
• Thank you Hawaii for being beautiful.
• Thank you church family for loving me, fostering my faith, giving me chances to love on my community and do good works, teach children, help those in need.
• Thank you tie dye customers for your support and belief in me.
• Thank you Cletus, for teaching me a special kind of love I never knew.  I miss you greatly  and severely.
• Thank you JJ, how would I have ever survived this year without you?
• Thank you Matthew Duggan, your relentless love, patience, care, charm, wit, strength, protection and devotion keep me alive in every literal and metaphorical way. I love you so much.
• I am so thankful for TV, giggles, my warm and safe home, snacks, cold clean water, hot clean water, the Bible, Scentsy warmers, baked goods, art, music, I could go on and on and on…

Catching Up

So after Thanksgiving, we spent Saturday watching the MICHIGAN/ohiostateblah game at my pal Trish’s house.  Since the game came on at 7:00am here, we had a breakfast party!

trish and me on gameday

a rather sassy photo of me with like one third of duggs back there.

Thanksgiving weekend was a mix of awesomeness and awfulness.

Awesome, because Duggs got a 96 from work (four days off!).  I really wanted to hike one day, maybe snorkel. The weather wasn’t suited for it though, it was rainy and dreary most of the time.  I prefer exploring Hawaii on super sunny days!

It was awful because of how I was feeling.  My ear and thus my face/under-eye-area/cheekbone all started hurting.  All the plans we had for the long weekend were dumped and we spent the whole time, sans Thanksgiving Day and the Michigan game, planted in front of the TV.   We actually went on a huge movie streak and I did some Christmas-crafts, card designing, and present planning.

So… I just had to take it easy.  Rest.  Lay down.  All of which I really don’t care for.  I’m a mover and a shaker, a dancer and prancer.  I was in a lot of pain, and just really not doing well.

On Sunday night I got ambitious.  I know know know I’m not supposed to so much as touch a drop of alcohol.  And while I don’t really mind being dry, every now and then I just miss it.  That missing it has become harder around the holidays.  Spiced wine.  Eggnog. New Year’s champagne.  I cannot partake in any of it and it’s bumming me out.

Sunday night I told Duggs that I wanted to try some wine.

Sweet Duggs went out and picked up a bottle of red.  A nice pinot noir.  I had about half a glass, was enjoying it.  Then bam! All of a sudden it hit me and it was all over from there.  My throat was burning.  My tongue, swelling.  I was getting hot and clammy and I was so incredibly nauseous I couldn’t move.  We busted out the saltines and ginger ale, and I just held on.  We prayed. We prayed so hard.  And eventually, it came to pass.

Because of the porphyria, my liver just cannot metabolize ETOH like a normal liver could or would.   My doctor suggested it may have been the red wine, and that if I’d like, I can try something different.  However, that risk of feeling  acutely crappy is pretty impressive.  I felt MISERABLE.  Like, downright awful.

…

On Monday morning, I woke up feeling better.  I went on a decorating and cleaning rampage.  I gave this house the deepest cleaning I have since Homecoming!  I was on hand and knee scrubbing out every nook and cranny.  This place is sparkling. Seriously.

look at the shine off that floor! and this was taken a day later, even.

I cleaned so hard I was sore the next day and I chipped my nail polish, *gasp*, the horror, I know.  Don’t worry, I fixed them on Tuesday.  Monday night I started slowing down and the pain started creeping back.   I assume I pushed myself a bit too hard on Monday.

i stole this idea from my friend trish and i think it's so cute. i'll opine on gift wrap at a later time.

kitchen table, set for xmas

Tuesday.  I woke up feeling okay again.  My ear was hurting a bit, but I decided to push through and go for a run.  Post-workout I felt amazing!  Runner’s high, endorphines, it’s all good and they really do make me feel better.  It’s natural pain relief.

i fixed the nails i chipped on monday

After lunch my friend Lynnie called, and as we were chatting I decorated the Christmas Tree, lights, ornaments and all.  I’m so proud that I cranked it out in like two hours!  I had a lovely catch-up with my darling pal (thanks for calling, Lynn, I love you!).

this year's tree!

my fav ornament, courtesy of my friend krista! LOVE!

winnie-a-pooh (how i used to say it, so it's my family name for sweet ole winnie)

i like my own reflection in the ornaments. sigh. my vanity is an issue i need to work on.

Then… it hit me.  A wave of pain came over me that was so incredible all I could was just lay on the couch and text. I was texting Duggs explicatives.  We discussed going to the E.R.  I didn’t know what to do.

I realized my super tight sports bra was still on from my run.  The straps pull hard on my shoulder, which then trigger neck and ear pain.  It sounds weak, or maybe bizarre.  But this whole area of my body is so tender, inflamed, wacky, that even a simple touch like a shoulder squeeze can set me off into barrels of pain.  Hours of uber tight sports bra = crazy amounts of ouch.

I just layed out on the couch.  I cried.  I packed myself with ice. And I just hoped and hoped it would go away.

here i am, tuesday late afternoon, icing and praying ... laying in the worst pain it's been in a long time.

It was bad.  We (Duggs and I) discussed going to the E.R.  My two main docs are both out on holiday leave though, and I so hate to go to the ER blind, without someone who knows the particulars of my case to be there to help out.  (And that’s not snotty… someone unfamiliar with porphyria could accidentally make me super ill, or even kill me; also, explaining my whole medical history takes an hour, the meds I’m on are staggering and I hate explaining them all, and I just get stressed out dealing with new hands in the mix – which I know is inevitable – but it is what it is).

Tuesday evening I felt the worst, strongest, most direct pain I’d felt in a long, long time.  I could have sworn an ice pick was being jabbed into my ear and going through to my cheekbone and under my eye. Just miserable.  I couldn’t concentrate, think, do anything.

I decided to stay home, to ride it out.   I posted this on FB the next day:

it’s been a really rough week/ten days. i was miserable on thanksgiving – but i was having such a nice time with my friends – i didn’t want to make a big deal out of it. the whole long weekend was ROUGH. it’s just been crappy lately.

i’m staying positive and optimistic, and my faith is really getting me through. my lovely amazing husband helps a lot too ♥

but, i’m being honest: it’s been rough. i’m not well, and i’m not sure what we’ll try next, what there is to try next. all my docs are on holiday leave till next week =(

….

[thank you miles!!] i know i’m known for being so cheerful and upbeat, but there comes a time when i have to just be honest and admit that’s it’s been harder than i make it seem.

something HAS to give, i just know it. God has brought me through many many challenges before, and i just know He’ll do it again. and through every struggle i’ve endured, amazing good has come from it. so my hubs and i just keep examining and seeking… looking for the good that will come out of this, the lessons we can learn, the path this is leading us down. and well, we have ideas, but we’re still in the weeds. hindsight is always 20/20, so once we’re out of this, i’m sure we’ll have gained much from it. it’s just no fun going through it!

…it’s tough. but when bad things happen, when times get rough, He pulls me out and dusts me off and shows me some good that has come of it. even cancer.

loss is hard to understand. death, pain, suffering…

but i trust Him. that was my prayer last night. i was literally ailing, just tears rolling down my face from the pain and the anguish and frustration of being in so much pain for so long. and i just prayed, “i trust You. now, get me through this, please.”

so we’ll see. cancer made me a better person, times a million. i was just rotten beforehand. mean, bitchy, bitter, jealous, etc. cancer slowed me down, gave me appreciation – made me NICE. i’m tellin ya… i wasn’t always sugary sweet.

Wednesday was much better.  Still in pain, but it was calming down.  I was starting to rope it in and get ahead of it.

hi, wednesday morning!

I worked on some crafts, took it easy, and just tried to focus on feeling good and calm, asking peace into my body.  Inviting Grace to just come in and soothe.  And it started working a little bit. Thank God.

a cup of tea is oh so nice.

Wednesday afternoon Duggs and I had doctor’s appointments and errands.  During and afterwards my ear was just aching.

my fun outfit for rainy cool wednesday

We came home and had a veg out night, and I just had to ice and take it easy.  It’s just been a rocky road lately.

Thursday. 

Today is Thursday.  I woke up feeling alright and I’m trying to be productive.  I’m doing lots of chores, working on a romantical surprise for Duggs, sprinkling some more Christmas flavor around the house.

this me and the pooch right now. hi!

I have a lot I want to talk about, but I don’t want to have this textual diarrhea and blurt it all out in an unthoughtful manner.  I need to write and edit before I post.  I’m thinking about opening up the floodgates to some feelings I’ve been plastering in for a while.

Losing my health is something worth grieving.  I’ve been really emotional lately whenever I think of past memories that highlight my vitality and strength, like my English Channel Expedition, for example.   On a related note, I actually went swimming recently and I was so slow.  It left me sad and longing for when I was quick, sure of my physical self, toned and in shape.

But, it’s not a total wash. Not by a long shot.  I’m still so very able-bodied and well in many many ways.  I must keep that in mind, be grateful for the many parts that do work, and the oddles of things I can do.

On the worst of days, this medical malady of mine is debilitating. Sure.  But I have okay days, good days and wonderful days on which I’m able to do quite a lot.

I have no idea how I could maintain a work schedule while I’m in this condition.  My docs don’t consider me stable enough to work, and it’s hard taking criticism from people for not having a job.  It’s been really hurting my feelings lately.  I WISH I was working right now, I WISH I was doing what a normal, healthy person of my age would be doing.

Similarly, we want to start a family soon.  But with my meds, it is out of the question.  And there’s no end in sight.  I have no idea, no clue, how long I’ll be on these meds or when something will work.  Family planning is 100% on hold now.  And after the miscarriage, it’s hard to have zero clue when we can try again.  It’s very painful, and I don’t think many people realize how that feels.

So yeah, I have more to say, but I want to say it carefully and tactfully.  In the meantime, at least I’ve come this far in opening up my vulnerability and being honest about what’s really going on.  I am happy, and positive, optimistic.  I do smile.  But I also cringe and cry, I worry and I get upset.  I feel loss and sadness, and most often: physical pain.  There’s two sides to this whole thing, and I think I can show both now.

As always – thank you for reading !! xoxo, hhr 

P.S.  I totally have so many blog posts I’m just dying to type out and put up! More fun stuff, less heavy stuff, too.  Like: Holiday craft and gift ideas, more cruelty-free product reviews! Christmas tie dye, Making your own giftwrap (a fave of mine for years now!), etc.  I want to post about giving, and what orgs Duggs and I are giving to this year.  So, I’ll try and get back on a more regular blogging schedule, I mean it.

someone get this fat suit off of me

I debated on whether or not to post this… it’s PETTY and bratty.  But it’s also honest.  I used to be an athlete, a swimmer and a lifeguard who lived in a bathing suit, I even did a little modeling.  I also battled an eating disorder in high school and my early 20’s; so that said, just like many women, I have body image issues.  As my medical condition, my age, and my lifestyle take a toll on my waist size, I’m becoming increasingly frustrated and hard on myself.  I just don’t feel like me anymore. 

Someone Get This Fat Suit Off Of Me!!!!

I’m not even going to glorify this post with an accompanying photo… No way.

But, I’m not very pleased with my current weight status.  My face is getting all puffy again, like it was back in the dark and dreadful Prednisone days.  I feel like there’s a fat suit on me, seriously.  When I move around, run, stretch, etc., I feel these extra parts of me that never used to be there.  It’s weird, and surreal and frustrating.

Now.  Don’t get in a huff and puff at me.  I KNOW I’m not obese, or technically even overweight. My BMI is actually in a very healthy place, in the mid-range for my body.

But I’m not changing body shape in a way that I’m okay with, or enjoy.  It’s side effect of the meds I take, of the steroid shots I get.  A lot of it is water weight, and even though I take a diuretic daily, it’s hard to stay out ahead of.

I try to eat okay… but let’s not kid, I have the palate of a child and all I want to eat is ice cream, candy and cake.  I have the sweetest sweet tooth ever.

I work out a lot, when I have the energy to do so.  I seem to go in chunks of good weeks and bad weeks.  Some weeks I’m doing two-a-days, and some weeks I can’t get out of bed.

But.  I’m going to be patient.  And focus on eating balanced, proportionate meals, working out and just waiting out for something to work (medically, health speaking) so that I can taper off of my meds.  All of the ‘roids I get shot into me are the worst culprits, followed closely by Lyrica. Ugh.  I’m grateful for the pain relief, but I could do without the barrel of side effects.

Anyways.

That’s my gripe!  I know it’s not that big of a deal, but it’s just what’s on my mind today. Blah.

/rant.

I’m going to focus on the good things my body can do, and be grateful for the aspects of my health and fitness that are intact – of which I have so many to be thanking God for.  I just need to respect His blessings and my body by getting my toosh into shape and into gear!!

my docs are on my nerves!

Literally!  I got a nerve block on Tuesday.  Hehe, wasn’t that a funny title?  I’m so witty.

we pulled up to TAMC and saw a rainbow, i thought for sure that was a good sign

Anyways.  Yeah, I got a Stellate Ganglion Nerve Block placed on Tuesday morning.  And the results are in:  they missed, it didn’t work, mah face still hurts.  Total bummer, I know! But, at least nothing went wrong, and I haven’t suffered any dreadful side effects.  So, it could have gone better, and it could have gone worse.  It’s a draw, and I’ll take that over things getting worse, any day!

The plan was to go into my neck and inject some meds to help cool off the nerve area that we suspect of causing my chronic facial pain.

quick background info:  since january of 2011, i’ve been suffering what is being Dx’ed as “atypical facial pain casue by peripheral neuralgia.”  they at first thought that i had “trigeminal neuralgia,”  but that was ruled out.  my docs believe that an acute exacerbation of the blood disease i have (porphyria) caused this nerve issue to happen – the blood disease, when exacerbated, can cause all kinds of nerve pain and damage.  doctors have been trying to find the source and treat my nerve pain all year long, and so far we’ve only come up with band-aids.  the nerve block this week was my first attempt at using a physical intervention directly into the area like that.  i’ve also done rounds and rounds of trigger point injections to try and treat the area in a referred way, as well as taking oodles of meds.

 

The plan was really solid, and I had been so very hopeful.  I had so many people rooting for me and my doctor, praying for us and the procedure.

The procedure itself was rather unpleasant.  It hurt a little more than I had been expecting, and just because of old experiences back when I had cancer, I don’t appreciate people rooting around in my neck with long needles (when I had cancer, I had this core biopsy of a lymph node in my neck go terribly awry, ugh).   So yeah, not the most pleasant way to spend a Wednesday morning, but it was manageable.

I did get about ten minutes of sweet relief, during which I cried happy tears and referred to my face as “blissfully painless.”  And then… IT CAME BACK.  The pain started in my ear, again, and just spread out.

that's a little snap shot of my procedure the doc took for me!

right afterwards, yeah i don't look thrilled

Don’t worry though!  We have more plans.  There are different kind of nerve blocks to try, and we can repeat this very one too.  There’s a chance the doctor missed the location by just a smidge.  Or maybe, the inflammation/aggravation is so intense, it’s going to take a LOT of blocks to get in there and hose out this fire.  I’m not sure.

hey! that's not a friendship bracelet!

Bad news: My face still hurts!

Good news: there are more things to try, hopefully a solution will be found and I’m still optimistic!

here's a photo of duggs taking care me after the procedure... oh wait. he's snoozing and the pooch is taking care of me! what a nice pooch.

here i am, one day afterwards and i can't get that permanent marker off! doh!

For the past couple days my neck has been kinda stiff and tender, especially where they poked me.  I woke up today feeling pretty much back to usual though, which is nice.

Yes, it’s back to the drawing board.  But I’m confident we’ll find something that will work soon.  It’s all a process of trial and error, and I’m okay with that.  Thanks for all the well wishes and support, I’ll post as things play out and as I find out more info myself!

Part Two on my Health: An Update on my Current Condition, Porphyria

Part Two on happy hippie rose’s health: Current Update

Did you read Part One?

It’s about my medical history and explains where I’ve been and how I’ve gotten to now.  It’s the lead up.  Go check it out if you’re interested!

People have been asking me what’s going on with my health, so I keep promising to write an update.  And then I keep finding reasons to put it off.   I have so much sunshine to spew out that I hate to post about the crappier side of my life.  The down side, my illness.  But life isn’t all rainbows and giggles, and I can appreciate being real and down to earth, even if that means being Debbie Downer for a hot minute.

My Health Update

What’s going on with me now? I have porphyria.

duggs and i at one of my oodles of appointments

Acute Intermittent Porphyria, to be more precise.  I’ve known (for sure) that I have Porphyria since 2007, but I’m just now really dealing with it.  I kinda dealt with it back in Leesburg in 2009 when I was in nursing school.  I had a really cool hematologist who educated me some.  But I’m just now REALLY dealing with it.  It’s def been the focus of my 2011 and if I’m painfully honest: I’ve been pretty ill this year.

I’ve been way more sick (or is it sicker? I’m an English major, hello, I should know this kinda junk… I’ll go with sicker) I’ve been much sicker this year than you probably know, more worse off than you can glean from my facebook profile, not doing nearly as well as I let on.  I promise I’m not lying to everyone I know, I just don’t focus on the bad stuff.

My illness is insidious.  It sneaks up on me.  I can hide it sometimes.  I don’t have an obvious tell:  no bald head like a cancer patient.  No cast like someone with a broken bone.  I look and seem normal.  Sometimes, some days I am normal.  But a lot of times I am sick.  I wanted to write a post titled “I wish I had cancer,” and vent about how it is to have this untellable disease.  Back in the cancer days everyone knew I was sick and I was given this sorta breadth of understanding. People just knew what was up, as soon as you see the bald chemo head, you just know.  And there’s this quiet respect that’s offered.

But when people see me at church or in the grocery store now, when I post pics of snorkeling and hiking, when I leave my health out of conversations, it seems impossible that I’m anything less than spot-on healthy.  So it’s hard to get the understanding that I used to get back when my illness was apparent.    It seems like I’m not even sick sometimes.   And strangers have NO idea, they can’t tell at all.

When you have cancer you still do tons of normal things.  In between chemo treatments you function and live your life.  So that’s how I am now.   In between I have a life.

Of course I don’t really wish I had cancer.  But I wish that people just knew that I don’t feel well, but I’m still alive, and kept that in perspective.  I don’t want or need special treatment from my loved ones, friends, and acquaintances, just understanding.   Not kid gloves, by compassion maybe?  Everyone knows what cancer is; explaining porphyria is tedious.  A lot of people readily realize that having cancer is a like a full-time job: so many appointments, doctor’s visits, diagnosis testing, treatments, taking medications around the clock, etc.  I wish people realized how time-consuming my porphryia is for me.  It is my full time job right now.

And then when I’m not at the doctor, on the days I do have energy: I can be normal-ish.  I can hike for a few hours.  I can go boating.  Some days I can run.  It feels good to be active, it’s good for me.  Anything that keeps me moving and reduces stress is excellent for me.  But just because I’m well enough to sit on a boat or walk to the dog park with my husband doesn’t mean I’m totally well.

me, at the dog park one afternoon!

That’s the hard part.  If and when I am able to do things, people who see me don’t believe or grasp that I’m ill.  At worst they think I’m faking, and at best they just don’t get it.   Or sometimes when I feel miserable, people have no idea.  So when I’m slow to get my wallet out of my purse at the store, people get annoyed.  There’s no tag on my shirt that explains my hands hurt from my medicine.   Every time I answer the phone people keep asking if they just woke me up, so I know something must be wrong with my voice.  I just don’t feel good, that’s all.

Porphyria ebbs and flows.  I have good days and bad days, good days with bad nights. That’s another thing: I sundown.  I sundown badly (I’m crying as I admit this part, it makes me feel elderly, or weak, or just something not myself).  I sundown; meaning I get worse at night, sometimes a lot worse.  My pain gets worse.  Sometimes I get confused.  Last night I curled up in a ball shivering so intensely.  Duggs put a blanket around me and I cried that I don’t think I’m ever going to be better.  But yet…. just hours before I went on a three mile run.  It’s hard for me to accept and understand, it’s hard for everyone to understand.

Once, back while Duggs was still deployed, I tried to rest.  People were insisting that my activity level was hurting me.  So I spent several days in bed.  Literally.  I was propped up like a princess.  Back when I had my laptop, I stayed in bed all day long chatting online and watching shows on Hulu and Netflix.  I ate my meals in bed.  I didn’t do a thing.  And it made me feel worse.

My doctors actually encourage me to be active.  Yoga, walking, running, getting sun.  Sun is good: the natural Vitamin D I produce in the sun is better absorbed than the supplements I take.  The activity reduces stress.  So I try to stay active, even if that’s confusing to people.   The daylight is good for me, I love daytime.

A few hours of action isn’t wellness though.  It’s a break.  It’s a gift, honestly.  I’m not working at all other than the tie dye business.  Thankfully people haven’t questioned that too much or given me a hard time about staying home everyday.  The sad truth is that I’m just not up to it.  I’m not well enough for full-time work, yet.

Let’s back up… This genetic blood disease runs rampant on my Mom’s side of the family, having been passed down from generation to generation just like our recipe for red sauce. The disease works in an ebb and flow kinda way – sometimes popping in to make you feel crummy and sometimes going away for weeks, months, even years.  During the ebb times the disease can be almost untraceable, not showing up in simple blood or urine tests.  But when it flows, or rather when the patient experiences “attacks” or “decompensations,”  the disease can announce itself in many colorful ways.

Literally colorful, one of the hallmarks is making your peepee dark.  Other symptoms are relentless tummy aches, headaches, neurological problems from tremors to seizures, and on and on.  GI problems, neurological problems, anxiety, insomnia, low blood pressure.

Like I said, it’s a colorful disease.  And the disease has different forms, and people with different kinds have different symptoms.  It’s complicated to say the least.  Most of my doctors hardly know more than a textbook paragraph or two about porphyria.

But what about ME?  What’s this all got to do with me now?

The miscarriage I had stressed my body out and caused me to “decompensate,”  or in other words: have a porphyria attack.  The bleeding, the physical stress on my body, the emotional stress, the crazy amounts of Motrin they treated me with: it all contributed to a porphyria attack.  As part of that attack I suffered some nerve damage/inflammation in my neck/face, on just my right side.   Porphyria can cause nerve cell death/destruction all over the body.    So I emerged from the miscarriage feelings worse and worse, and my face and ear started hurting.

(Side note: my docs actually think that i don’t have crohn’s disease, that its really been porphyria all along, causing nerve cell death in my GI tract. crazy, huh?)

Okay, anyways… this porphyria attack (that probably started) in January caused the nerves on the right side of my face to get wonky.   I have problems with cranial nerve five and six.   The location of my pain mimics “trigeminal neuralgia” and for a while they thought I had that.  I actually went into the ER thinking I had an ear infection, that’s how this whole thing started and how they got to the trigeminal neuralgia diagnosis.  I wrote a blog about it a while ago: Blog on Trigeminal Neuralgia.

I saw a neurosurgeon back in the spring, who treats trigeminal neuralgia all the time, and she definitively said that’s not what I have.  My situation is different.   So, now i’m diagnosed as “peripheral neuritis, caused by porphyria.”  They also call it “atypical facial pain.”  So laymen’s terms: the blood disease I have flared up and in doing so messed with the nerves that concern the right side of my noggin; I suffer loss of sensation, facial pain, twitching, increased sensitivity to sounds, touch.  It’s odd and hard to pin down.  It changes daily.   But basically, the blood disease I have creates neurological problems, and for me, during this attack, it seems to be making my face hurt.

I get terrible ear aches, but anatomically, my ear is perfect.   I’ve had ultra sounds, MRIs, CT scans, X-rays, cameras stuck up my nose, you name it – they’ve done it.  I’ve had lab work drawn, tests run, everything.   And nothing is “wrong” with my ear!  Yet it HURTS. The pain is crippling.   When it flares up real bad, i’m rendered nonfunctional.    The ear pain starts deep down inside, it feels like an inner ear infection, and it’s only ever on my right side.

taking more of my blood for more of their testing

The pain starts in my ear and radiates out.  So my teeth, my jaw, my cheekbone and my eye socket all hurt.   I get headaches behind my right eye.   When I open my mouth and air touches my teeth, sometimes it hurts.   And it’s only on the right side.  It’s so weird!

So anyways, they have me on all kinds of meds.

our med cabinet, well... they're all mine.

Nerve meds, like lyrica. (i was on gabapentin, but that didn’t work out so well).   I’m on pain meds and more pain meds.   The Lyrica has all kinds of side effects: I retain water terribly.  So I’m on diuretics (lasix) to help with that.  But when you take diuretics, you have to take potassium, so i’m on that too.  It’s a crazy cycle!

When I wake up in the morning, the water retention is the worst.  My hands and feet get so puffy and swollen, I can’t even make a fist and it hurts to walk.  The skin gets stretched so tight on my fingers that I get these little cracks in my skin.  It hurts to type when that happens.  So I take the lasix in the morning, and I pee all day long.  If I take the meds on an empty stomach, I get sick.  So I have to time my meals around my meds.

Since I had a small bowel resection in 2004 and I’m missing a couple feet of small intestine (I have no terminal ileum) I can’t take certain time release meds, or anything that absorbs enterically.  I have to take stuff that gets absorbed in your stomach.  Then, with porphyria itself, there’s all kinds of meds that are dangerous to take.   Meds, meds, meds.  It’s insane.

the topical patches i use for pain

i wear the patches 12 hours on, 12 off. duggs calls me "patches" now. it's cute.

In May, before Matthew’s homecoming, I went to my docs and said I needed to get off all these meds.  The pain was finally under control and I was doing better.  So they started me on a taper.  I was tapering off the meds, bit by bit every week.  I had some rough side effects, like dreadful night sweats for one.  By the end of June, I was pretty much done with most of the meds.  I had like a week of tapering left to go.

It was amazing!

I felt like things were under control. I felt like the end was in sight and that I’d be back to normal. The big deal for me is that while I’m on all these meds I can’t get pregnant. They’re all really bad for in vitro babies. Sadface.  So, tapering off felt great. I was proud of myself!

Then, I cracked that tooth.  And I was in severe pain.  Dental drama is a big deal for me. The meds they use at the dentist is bad for porphyria.  Having dental work done stresses my body out.  And since I’m terrified of the dentist, my anxiety and stress levels were going up and up.

me, right after i had my bad tooth yanked

hey bad tooth, see ya never

So the doctors decided I should go back up on the meds.  Stressful events kept piling on… and they decided to up and up my dosages to “hold me.”  I mean, as soon as I cracked that tooth and my mouth started hurting, my ear started throbbing again.  I know I needed the meds, but it was a big bummer to come SO CLOSE to being done, and then go back on again.

So, all of my docs: my neuro, the neuro surgeon, my geneticist, the metabolic team, my case manager RN, the pain clinic, and my hematologist all are in agreement that i need to see a porphyria specialist.  That’s a pretty intense team, huh?  I love my case manager. She calls me all the time and she sorta keeps everything organized for me. Cathy.  She’s great.  My neuro is the chief of his dept, and he’s the one who has really taken the reigns of this whole porphyria ship.  He manages my meds and treats me for the ear pain.  He’s amazing.

we got a glass at mcdonald's and we gifted it to my neuro, it was pretty funny. maybe you had to be there? (the glasses are free, lol)

My geneticist has been eductaing me about porphyria and she’s been building a family case for me.  You see, the disease is SUPER genetic and about half my family (on my mom’s side) seems to be affected.  I won’t call any of them out specifically… but yeah. Anyways. The geneticist is amazing.  She made me an emergency protocol.  If I were ever hurt or let’s say – in a car accident – and brought in to the ER, I’d need special treatment because of my porphyria. So I have these papers I keep with me, and Matthew keeps a copy with him, the glove compartment, etc. – explaining what to do.

I have to wear a medical ID now. They made me a red dog tag, but since that’s ugly I have a Road I.D. bracelet. It’s awesome.

my medical ID

There are only five porphyria specialists in the US, and they’re all on the mainland. So my case worker has been organizing my trip to see one of these doctors. I still have no idea where I’m going or when – but it’s in progress. I’m having some genetic testing done now for one of the specialists. I’m probably going to go to Mt. Sinai in NY.

So yeah. My face hurts all the time. I wear my medicine patches on it. Sometimes I ice it. I get nerve blocks and shots of steroids in my neck and shoulder to help. I have a HUGE muscular knot in my back on the right side which might be playing a role in this.  The steroid shots are “trigger point” injections.  It’s a nerve path thing.  They shoot you in one area to affect pain in another area.  A shot in my back can aid the pain in my face, because that’s how the damaged nerve path works.  In theory.   I’ll try anything, so I get the shots often: sometimes in my head (that didn’t work well), sometimes in my back, sometime sin my neck.  We’re trying to figure out where the damaged nerve path is.  The shots have some numbing medicine (one of the -caines, like lidocaine) in there and some steroids.

my dad, my neuro, and me, during a trigger point session. my dad is an expert in trigger points it so happens.

the trigger point poster

my face, when it went half-numb from some trigger points once. it wore off after a few hours, no worries

I’m learning more and more about porphyria as all of this goes on. It’s been crazy. 2011 has been a wacky, roller coaster of a year!

From my porphyria notebook the genetics dept prepared for me:

Rose has the clinical features and a family history for Acute Intermittent Porphyria (AIP). The human porphyrias are clinical disorders reflecting defects in heme biosynthesis.  Acute porphyrias cause acute attacks of neurological symptoms that can be life-threatening.  Acute attacks are triggered by environmental stressors such as certain drugs, sex steroid hormones, reduced intake of calories and carbohydrate, alcohol, and unknown factors.  Many of these factors stimulate heme synthesis in the liver, which in the face of a metabolic enzyme defect, leads to increased production of heme precursors that may be neurotoxic.

my porphyria notebook

my emergency protocol

Does this link work?  It’s for a video i posted on FB of what happened to my face after some trigger point shots my doc gave me.  Oy.  Half of my face went numb!  I tried to upload it to this post, but I can’t figure it out.  My apologies if the link doesn’t work!

So that’s what’s been going on.  This weird balance of okay and not-okay, of heathly times and illness.   I seem to be getting better, in many ways.  In some ways, I’m stalling out.  I need to get to a specialist, one of the five porphyria clinics on the mainland.  Hopefully, that’s something that’s able to happen and I’m able to get better so once Duggs is out of the USMC I can work.  I want and need to be able to work, so hopefully something will give soon.

Any prayers for healing, good vibes, good thoughts, anything happy is VERY appreciated.  

 

And, I will update.  I’ll update sooner next time, I promise.  As always, thanks for reading.  It means a lot.   Love ya, happie hippie rose

PS – and let me just add… and i’m such a heel for not mentioning this earlier:  my husband has been so amazing throughout all of this.  He comes to as many appointments as he can, he takes care of me dutifully and with love.  He knows my whole medicine routine and regimen better than I do!  He is the best.  He cares for me with so much love and tenderness, it’s beyond words how blessed I am to have my Duggs caring for me day in and day out.   Thank you my love, for taking such good care of me.  I’d be a goner without that guy for sure, he’s the BEST.

 

 

 

 

 

 

 

 

the health history of happy hippie rose

My Health History, Well A Brief Summary Anyways.  Consider this Part One of two, the “two” is going to be the update post about what’s going on now, okay?

Here goes nothing… and I’m sure I’ll forget something.  (If I do, someone let me know, will ya?)

Growing up as a kid and teen, it seemed like I was never sick.  I remember an occaisional fever, and the time we all got the chickenpox (my mom and all her friends had us all get it at the same time by rubbing us all over my friend Mary when she cropped a pox, clever thinking!).  But never “sick.”   I swam and ran track in high school, I was a beach lifeguard.  I was really healthy, athletic, I was fine.  (What a blessing!!!!).

My sophomore year of college, 2002, started off with an emergency appendectomy which lead to the diagnosis of “Crohn’s Disease” and it was all downhill from there. When they did they appy they realized my needless organ was fine, but that my small intestines was inflamed and horrendous, misdiagnosed as appendicitis, and thus the Crohn’s Diagnosis.

Immediately I started treatment for Crohn’s Disease, which was fun, let me tell you.  I took steroids, antibiotics, anti-inflamm meds, and immunosuppressants.  Tons of meds.  I was “sick.”  The meds for the Crohn’s didn’t work, things got dramatically worse, and in the spring of 2003 I has a major surgery losing a couple feet of small bowel and a snippet of colon.

2003: the prednisone made my face huge. woah.

not to be totally porn... but you can kinda see my scar that runs from hip to hip from the bowel resection. What a doozy!

In 2004 I battled Hodgkin’s Lymphoma, which was actually acquired as a result of medications I was on to treat the Crohn’s disease.  All of the immunosuppressants done broke my immune system.

I did chemo (went bald, yes!) and radiation.  They also sliced me open a couple times to take out some lymph nodes, put a portacath in there.  At one point they hacked into my bone marrow (thank God the cancer hadn’t spread to there) and they did oodles of biopsies, fun times.

sasha's on the left, i'm on the right. i know this is terrible pic quality, but i hardly have any pics from back then!

Here I am on a news story about harvesting eggs.  Yeah, I had my eggs harvested before I started chemo (because of the chance I’d go infertile).   Check me out, I’m about four minutes into the video clip:  http://www.cbsnews.com/video/watch/?id=617776n&tag=mncol;lst;8

The Sorority I was in raised money for my treatment.  The entire Greek system at my school did, really.

the school paper (UNF's "The SPinnaker) did a story on my cancer and on all the fundraising that went down. it was just amazing the love i was shown.

a close-up of the photo from the paper article, that pic is from right before i started chemo.

It was an intense time… coming from a Stage III Diagnosis and back to health all in one year.  But it was also formative, powerful, inspiring.  Clearly it changed me, and I think much for the better.  I had an AMAZING support system.  My doctors and cancer team was all at the Mayo Clinic, and they were pretty serious (duh).  My family was incredible.  Driving up to Jacksonville to take turns going to treatments and appointments with me.  The guy I was dating at the time was a lifesaver, literally, as well as all of my friends.  It was just incredible the literal physical love that embraced me.  Strangers and people I was close with all teamed up to save my life.  It’s such a hard thing to put into mere words.  Thank you, is as close as I can get.  Thank you for my life everyone. 

My overall ability to appreciate life increased tenfold – at least.  Ever since I’ve been happier, kinder, more grateful.  My faith is God was solidified (my testimony of God coming to me in those days is pretty awesome) and my trust in humanity restored.   As hokey and bullcrap as it sounds, I’m grateful for having had cancer.  It changes your perspective on everything and after having gone through it, everything is better.

The day I was diagnosed I pulled into Publix after leaving the hospital to grab a couple things to eat.  I was feeling pretty sorry for myself after leaving the hospital, knowing I had cancer.   I pulled into the parking spot and I’ll never forget what happened next… the spot next to me was occupied by a van.  I saw a mom get out of the driver’s side door and walk around to the other side… and a special door slid open: it was a wheelchair ramp.  Out came a child, maybe four or five years old in an electronic wheelchair.  I have no idea what illness that child had, but I just remember seeing scrawny, twisted legs… and a HUGE smile.  The mother talked to her kid as the wheelchair lowered down, using big smiles and a happy tone, clapping once the chair made contact with the ground.  These two people were so happy.   This child who would probably never walk was smiling, and here I was: 20 years old and getting sick now.  I’d had an untouched childhood, full of running around and doing “normal” kid stuff…  (now seriously, don’t anyone get all politcally correct on me for my retelling of the anecdote.   I’m not saying this child wasn’t normal or that I’m special because I’ve never been in a wheelchair…. that’s NOT the point, okay?).   I saw this child who would never run a lap or be on the swim team in the same easy way I had experienced.  I had about nineteen years of flawless health, and so many many people don’t even get half that.  Nineteen years!  (I got cancer when I was twenty, but I started getting sick when I was nineteen).  From that moment on I decided never to ever feel sorry for myself.  In the grand scheme of things: I have had everything to be grateful for and not a thing to feel sorry about.

Anyways… I could ramble on and on about my cancer experience…  chemo sucked, radiation was worse.  One night a sorority sister of mine cried because she had gotten a bad haircut.  We were all going to a concert together, and we met at a frirend’s house first to eat dinner.  This one girl, A, came into the house just in tears.  She’d gotten what she considered a bad haircut.  A cried, huge tears rolling down her face.  And I just sat there, bald and gobsmacked.  She really had the audacity to cry about a bad ‘do while I was sitting there bald?  At the time her insensitivity made me mad.  I remember being pretty annoyed.  Looking back it just gives me broader perspective.  Next time you think your mop looks ugly, just be grateful you even have a mop!

a wig and hat catalogue the ACS sent me, along with some other cancer info

my completion of treatment center from mayo clinic's rad dept - for the last several years i've been celebrating my cancerversarry as dec 5th - but son of a gun, that thing says the 3rd! shoots!

In 2006 I had an inguinal hernia which needed surgical repair; it was done openly (as opposed to lap surgery) and I had some mesh put in there.  They used the same scar as my bowel resection and just extended it.   In 2008 I had some skin cancers cut out, they were Melanoma, which is annoying because I can’t say “cancer-free since 2004.”  Ugh!

Backtracking for a minute… In 2007 (after a crazy series of events and symptoms) I was diagnosed with porphyria. Porphyria is a blood disease that has a whole variety of symptoms – for me the most notable is GI problems.  Tummy aches, digestion problems, nerve cell death in my GI tract, they can all be blamed on the Porphyria.  My doctors actually think now that I don’t even really have Crohn’s Disease, that it was the Porphyria all along.  Even though I was officially diagnosed with this genetic blood disease in ’07, I’m just now learning about it.  But that’s a post all on it’s own.

In 2009 they cut me open to get out scar tissue that had grown in me from all the times they had cut me open before.  “Lysis of Adhesions.”  The irony never ends.

I’m the “sick girl.”  I guess.  It’s weird.  As sick as I am, I’m also not really sick.  The most I’ve ever spent in the hospital was a couple weeks.  I have both arms, both legs, I can walk and talk.  I can even run more days than not.  I’m honestly okay, and I enjoy a fabulous quality of life.  I’ve never spent a minute feeling sorry for myself.

When I moved out to Hawaii I had never felt better.  Duggs and I quit smoking (I know, a cancer survivor who smoked = as ungrateful as it gets, I KNOW).  I got back in shape.  The only med I was taking was my thyroid pill (when I had radiation for the cancer they lasered my thyroid to death,  oopsies!).

2010: the best I've ever felt!

As I was feeling so awesome and healthy, we decided to strike while the iron was hot, and we conceived.   We found out we were pregnant right before Halloween and I would have been due ’round the 4th of July.  I don’t think I’ve ever been happier or felt better in my life. Honestly.  It was the best.

I miscarried around Christmas.  It was one of the saddest things I’ve ever experienced. Matthew was deployed and in Afghan when it all happened.  On December 17, 2010 I had a regular appointment, when I got there they couldn’t find a heartbeat.  They gave me some meds and sent me home to take care of business on my own.  I bled for almost a month; starting cytotec on December 19th and not passing the “products of conception” (my precious baby-to-be) until fifteen days later.  (If I could go back in time I would have done the D&C a million times out of a million times.  Cytotec should be illegal).

I’m so glad those sad times are over.  I don’t know what else to say about all of that except that if you’re blessed enough to have a baby yourself, give them a little smooch for me, will ya?  I know I’ll be a Mom someday, when God’s timing for me is better.

So I’ll end my “brief health history” there, and pick up Part Two with my 2011 Health Round-up in a post all it’s own.

I thank God for my health every day.  Despite everything that I’ve been through, I consider myself to be blessed beyond measure and more fortunate than 99.9999% of people on this earth will ever be.  I’ve had great care, good doctors, nice hospitals, and excellent treatment the whole time through.   Too many people who are sick can’t say the same.

Thank You God, for the health I have today and always.  Please bless every doctor, nurse, tech, and friend who’s laid a hand on me, cared for me, thought good thoughts for me, and been there.  Please bless them all.  I pray that you continue to bless me with a healthy body, heart, and mind now so that I may keep growing and bettering myself to do good things and help others.  I want to be healthy enough to pay it forward and take care of those who are sick.  For all those seeking better health and comfort, I pray.  Thank you God for your endless love and mercy.  Amen. 

oil cleansing method

Oil Cleanisng Method

I wash my face with pure oil.

Sounds crazy, right? It’s honestly what I do though, and once you hear me out, you might not think that sounds so very crazy at all. You may actually want to get in on this all natural, vegan/cruelty-free, easy, old-fashioned, simple facial cleansing method for yourself too.

Some friends were discussing the “oil cleansing method” months and months ago, and it piqued my interest.  Washing your face with oil?  I’d never heard of such of a thing.  It sounded insaneo and awesome at the same time.

You see, ever since I quit taking any form of birth control in 2007, and ever since my face has been a mess.  I have the worst acne ever.   And at age 28, it’s so tiring.   I should have been ending my acne phase a decade ago.  I’ve tried everything.  Even *gasp* Proactive. I’ve been to dermatologists, I’ve taken really strong stuff that I’m not allowed to go out in the sun while using.  I’ve tried creams and washes.  Been there, done that.

The Oil Cleansing Method was so far off course of anything I’d ever tried before, that it fascinated me.  The ideology is simple: since our body naturally produces oil, oil is part of our skin and not the enemy.  All the facewashes that proudly boast “oil free!” – are actually counterintuitive and making things worse.   When you dry up all the oil on your face, your glands react by producing more oil.   When your glands overcompensate and over-produce oil, you get clogged pores, breakouts, acne.

There’s a happy medium that should be happening on the surface of our faces: a natural, healthy amount of oil belongs on our skin!  So goes the ideology of the oil cleansing method.  The thinking is that by using oil on our faces, we stop those glands from getting protective and overcompensating.   We clean out our pores, keep our skin supple and moisturized, and stop over-washing.   Besides, the ingredients you need can be bought in a grocery store (or health food store, depending on what you choose to use) and in the long run are far cheaper than buying washes, cleansers, toners, soaps, etc.   And to prove to you what I mean, I made myself the guinea pig and I have serious results to brag about!

Before i started the oil cleansing method (January 28, 2011):

before pic - yikes!

acne city

acne on this side too

my mug

One week later I wrote: I can totally feel a difference in the quality of my skin, its much smoother and it feels supple.  i’m not sure if you can tell much of a difference in these pics… but we’ll see as it goes.

Pics from one week after I started:

one week later!

after just one week, looking better already!

i look so creepy in this pic.

lookin' good already

I linked to the site that taught me everything I needed to know to start the method earlier in this post, but in case you didn’t click on it… here ya go:  The Oil Cleansing Method.  Read that page, and it will explain to you how/when to use this method.

For my personal use, I mix Castor Oil and Sunflower Oil, in a 25/75 ratio.

castor oil, sunflower oil, and the glass vial that holds my 25:75 mix

As copied verbatim from the OCM website:

The Oil Cleansing Method

First and foremost, this is typically done in the evening, prior to bed. There should be no need for deep cleansing in the morning if you’re waking up with skin cleansed the night before. In the morning, a quick wipe with a warm washcloth should suffice. We don’t want to overcleanse our skin as this will serve only to irritate and cause more oil production. The objective of using this method is to deep clean while balancing our skins oil production at the same time.

• You’ll need a soft washcloth, your oil blend, and hot, running water.
• Pour a generous puddle of oil into the palm of your hand. Roughly, the size of a quarter, but more is acceptable. Rub your hands together to warm the oil and smooth over your face.
• Begin massaging the oil into your face. This will remove makeup, dirt, and other impurities, so there is no need to use a makeup remover or wash your face prior to the massage. I’ve found that this removes even my stubborn waterproof mascara and concealor.
• Using slow, firm motions across the skin, massage the oil deeply into your pores. Take your time and focus on your problem areas. You want the oil to work into your pores so that blackheads and the like can be dissolved and steamed away.
• As you’re massaging, let your mind drift off to something calming and breathe deeply. Take this time to relax and release some of the stress that your body is harboring. Sit down, breathe deeply, and take your time. Give the oil enough time to work on dissolving the impurities in your pores and give yourself enough time to unwind. Picture what your face would look like if it were completely clear and free from blemishes. Focus on that image and know that it is attainable. Trust that it is attainable. Accept that it is attainable. You can have clear skin, free of blemishes and you will have clear skin, free of blemishes. Focus on perfect skin and breathe deeply.
• Once you’re satisfied that your pores are saturated and you’re feeling calm, pick up your washcloth and soak it in clean, steamy water. We want the water to be warm enough to open your pores and remove the oil. Cool water will not open your pores, nor will it remove the oil efficiently. We’re not scalding our skin, we’re steaming to coax our pores to release the oil carrying the impurities. We’re essentially steaming our skin as an esthetician would, but without the luxury of a steam machine.
• Hold the washcloth to cover your face. Allow it to stay until it cools. You will feel your pores releasing the impurities. Wipe the oil gently away and rinse the washcloth well in hot, running water. Hold the washcloth to your face again, allowing it to cool. Wipe gently, rinse well, and repeat two or three more times. Avoid any temptation to scrub, as you’ll find it’s completely unnecessary and your skin will be soft, smooth, and free of flakes without the additional manual exfoliation and irritation that will result. Impurities, dead skin cells, and bacteria will be gently swept away.
• Have no fear of the oil, as the steamy washcloth will remove it. The Castor Oil, though it is an oil, will help with the removal of the other oils, as well. It is our main cleansing oil and is easily removed with warm water.
• If your skin feels tight, take a tiny drop of your oil blend, rub it between your clean, damp palms and pat it onto your damp skin. Gently massage any oil residue into your skin so there is no film of oil left sitting on the surface. Your skin should now glow!

using my hot washcloth

so fresh and so clean, post-OCM! ahh! this is from a couple days ago... my skin has improved so much in past six months!

I use Sunflower Oil as a general moisturizer too.  I don’t even use any creams or lotions anymore.  Literally, oil and makeup are the only things I put on my face.  Well, sometimes I use a little soap (here and there, like in the shower on days I’m not doing OCM … and I use sunscreen, but you know what I mean: the lotions and stuff I used to use in the past, I haven’t touched in months.  I prefer my oil).  Before I apply make up, I use sunflower oil.  I just put a teeny amount in my clean hands, rub together, and then pat on my face.  I get such an even amount of moisturizer, it makes applying makeup so much easier.  It’s my daily moisturizer!

I get compliments on my skin all the time now.  My mom is out here visiting us this week, one of the first things she said after we picked her up from the airport was a compliment on how great my skin looks.  I can go out without makeup on now.  I feel happy about my skin.  I like the quality of how it feels, soft, even, nice.

a very recent photo - nice skin, huh?

Don’t get me wrong: I still get occaisional breakouts.  When its my time of the month, always.  Ugh.  But, the overall quality of my skin and the overall condition of my acne is so much improved.   I know many of us gals in our 20’s deal with acne and it just sucks.  I’m sure it happens to guys too.  So, as someone who’s been there, done that: hated the way my skin looks, piled on the makeup, hated going out and hating seeing photos of myself… as someone who’s dealt with that for years, and now doesn’t have to, I’m just passing on the knowledge of what’s worked for me.

Do you use OCM?  Have you had great luck with it?  Are you going to try it?  Tell me about your own experiences!