I’m experiencing my first Spring in Western New York.
Some of the first blooms to show up around our new house.
More than being a lovely season, it’s been an honest time of “firsts” for me. One such realization came not too long ago… Continue reading
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.
Whew… it’s been a busy time here at HHR, with all my photo posts from our trip, updates, catch ups, and everything. Hope you can stomach one more photo binge. Can you?
Here are all the rest of our initial Fredonia pics, from our first few days and weekend here! Just like the other posts of the fancy pics (all the photos from Long Island and then all the photos from Pottersville), I’m just going to throw all the photos in here as a blob, and anyone who wants to can go through them.
As for getting settled in and how we’re doing, I touched on all that earlier this week in our post about finally being here in Fredonia.
So things should be getting back to “normal” around here … if my blog even has a normal! It’s been fun including everyone on the trip, and I know that people have been so curious to see what our surroundings are like, to see the big difference it is to go from Hawaii to Western New York. So it’s been fun.
But hopefully life will take on a more routine feeling and I’ll get back in the swing of things, around the house, with work, and here too! I’m hoping that my energy levels keep soaring and before you know it I’ll be posting about running again, and who knows what!
I’m just so very glad to be where I am. I’m feeling better in so many ways, and just being on the first page of a fresh chapter is so nice. I’m so blessed to be with my Duggs, surrounded and supported my some amazing family and friends, and to have a whole new section of our story to set out on. No matter how routinized daily life becomes, that aspect of where we’re at – that newness and that exciting looking-over-the-edge feeling won’t wear off for a while I don’t think, at least I hope it won’t!
Anyways. For now, I’m quite happy to be posting from Fredonia. And I hope you’ve enjoyed coming along with us on the trip!
As always, thanks for reading!! xoxo, hhr
February is hardly here, and it already is so super rad.
1. As of 1-February both Duggs and I saw promotions!
His was long-in-the-making (he won’t go out a Terminal Lance afterall, woohoo!)… and I saw an hours increase in my part-time writing job. So rad. What awesome blessings, we are so happy and grateful and glad!
hooray duggs!!
this dreadfully creepy photo totally encapsulates my experience as a paid writer and marketer. ... (cool it, i'm kidding. this IS so creepy though, yeah? yeah.)
2. I’m thisclose to getting my student loans consolidated.
This is so hardcore awesome, really. Student loans are both amazing and terrible, great when you’re riding high on ’em and awful when it’s time to repay the man. Luckily, I think I may be able to get in at a nice interest rate and bundle ’em all together. This is the month it can finally happen!
3. The January workout goal was MET and SURPASSED!
I won’t disclose the embarrassingly meager requirements of said goal. But hey, a goal is a goal, and meeting a goal is awesome. Goal goal goal. Did I say GOAL enough?
yeah, i did blur it out. and what? (isn't our workout log cute, btw?)
Goooooooooooooooooooooooaaaaaaaaaaaaal.
We did it! Eff yeah!
I’ve even lost a couple lbs in the process, which makes me happy.
collar bone says to cheek bone, "don't call it a comeback."
4. Some things are coming together with our move.
No, we don’t have any details… we have NO CLUE what day or date we’ll be moving on. But, some of our more personal arrangements and what not are coming together nicely, including a good phone call I got today. I’m feeling confident, more ready, more okay with it.
5. It just rocks. It’s just awesome!
Life is just good. I’m happy and blessed and cheerful, optimistic. Ole Stinky Duggs is in good spirits too. We’re happy folks, by nature. November and December were some stressful times, lots of blah (like so serious blah ick no bueno). And January, the new year, just breathed some nice fresh life into things. New goals, new perspective – I have kinda pulled around the bend a bit with my health (which greatly affects our daily lives)… New job, new med routine, new workout – and things are just falling into place nicely.
6. Valentine’s Day Brings out the ROMANCE.
Nothings says romantic like, “oh hey I got you one of those weird hologram bracelets.” At least it does in our house. The Duggs finally caved into my incorrigible insistence that those bracelets are magical and make you awesome.
i've got the power.
So here’s to being stretchier than ever. Heh. Interpret that as you will in light of the looming holiday de St. Valentine.
…
So, Happy February everyone!
For all of my gals and pals enduring deployment, the turning of the cal page is ALWAYS a big ole deal – one more month down!
It’s Leap Year, which is fun and weird… and it means a spring and summer of campaigns (which has me fired fired fired up already). And to readers and friends in general: Have Fabulous Fecking February!
As always, thanks for reading! xoxo, hhr
Happy Hippie Rose 