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.  

Running Around Western New York

Three weeks into marathon training and the Fall Distance Group through Fleet Feet Buffalo – and all is well.

Due to the inevitable navigational errors that seem to have become a weekly staple, this past Saturday was an 11.11 mile jaunt through residential downtown Buffalo.  Despite the extra distance, I felt mostly strong throughout – and finished with a flourish.  I’m forever grateful to the new pals I’ve made at the group who dutifully pace and push me, helping me get faster and stronger every week.  Running with people is one of the best choices I’ve made in a good, long while!  Not only is it more fun, it’s clearly beneficial.

Yesterday, late afternoon, Duggs and I had an errand to run in town.  And then I literally ran home, made the house a water stop and grabbed the dogs, and finished my five mile active recovery jog out in the grapes.  After using KT Tape for the first time this weekend, last night’s run was the first in a while in which my shin did NOT hurt.  Amazing, huh?  I have an idea to post about some of the running gear I’ve stumbled across lately.  Some favorites have clearly emerged (KT tape being a big one) – but as time goes on, I’ll know more about the other stuff I’m giving a whirl while I run.

Last week I mentioned about the lack of Hawaii as a potential discouragement from reading – and some of y’all kindly requested more Western New York pics.  Pretty and outdoors is still pretty and outdoors; I personally see the beautiful merits of each location, clearly for varying reasons – but both pretty none the less!

Saturday’s run in downtown Buffalo… here are some photos I went ’round and collected post-run.  I didn’t want to photograph the entire area, I have to leave some aspects for the weeks to come!

post-run stretching!

marketing fail

but the canisius school is gorgeous, really

just down from the school, we run along this pretty pristine tree-lined road

behind these trees, and nestled closely with homes and small non-profits (a nursing home is across the street) – is a gorgeous orthodox church. greek, i believe.

the front view

taking in a fuller view for better context.

 

 

 

 

 

 

 

 

 

 

 

 

The sky was so blue on Saturday.  Colder weather and rain was promised to us – but instead, once again, we were treated to a cloudless sunny day.  It was mildly cooler in the morning, but as soon as the sun hitched herself high enough to be seen in full, it was nothing but heat that came our way.   Want more deets?  Check out this run map: http://www.mapmyrun.com/routes/view/116526237

From the Farmer’s Market I’ve mentioned.  In a small park amidst opulent older homes – the market feels more like a picnic, the atmosphere is happy and relaxed.  I love just wandering around, people watching.  It’s the Elmwood-Bidwell Market, btw, if anyone wants to look it up.  I just adore the whole neighborhood it’s in!

the street along the farmer’s market – this one house is always selling furniture and stuffs out front

same side of the street, facing the opposite direction from the yard sale house

After I left the Farmer’s Market, it was time to drive home.  But fear not – I disregarded safety (and probably the law) and still managed to snap a few pics from the whip.  They’re poorly focused, but at least you get a feel for the area from them:

so many roundabouts (or rotaries for my bostonians)

i think that there is canada!

From last night, running through our small rural town that’s about an hour south of Buffalo.  I love it here too.  Yesterday’s run was just one of those feel good workouts, the sky was blue and the air was thick and hot – but I had a grand ole time!

quaint and oh so charming, yes?

all roads lead to home. specifically this one is pretty direct.

my lens was blurry, but it kinda lends to the whimsical nature of where i really live

running past sullivan’s charbroil is hard – oh the smell, so enticing.

and of course, the backyard and the grapes

the pooches need a workout too, of course

i look downright crazy in this one. i like it!

oh hay, i’m getting some sun out on my run

shaka!

love the cancer survivor running tee!

Ahh. So if you follow me on Instagram (as you should – @RadRosie) or Fb, or Twitter (see the side bar for those) – you know about the tee from last night’s run.  As I was sweating to the electropop (and some oldies) I was, as I said above, just having fun with it.  I kinda dance along sometimes, I usually smile – so when people kept honking and waving, I thought that seeing a be-neoned gal in a crazy get up bopping along was a novelty of some sort for such a one-horse town.  Only way after the fact did I register that I was rocking my SURVIVOR tee!  Oopsies – duh, of course that’s what people were pumped about.

So that was pretty fun, actually.  I love strangers that will a shout out and some encouragement over something like that – so rad!

…

Well, that’s all I have for today.  If you think you could stomach it, I’m so tempted to post the photo diary of my “evolution of a blister.”  I have a nasty, slightly infected, triple blister on my right foot.  It’s heinous and admittedly, painful.  I’m dying to gross everyone out with it.  Thoughts?

Hope you’re all having lovely weeks; to my runner pals: enjoy the warm weather while we still have it, and holler at me about how your runs and training are going.  I’d love to have more running pen pals and blogs to follow to chat about training, tips, injury prevention and the like!!

As always – THANKS FOR READING!  

XOXO, HHR