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 pulled

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.










23 responses

  1. The link works, Rose! That video is great! 😉 Thanks for sharing, as always I love reading your blogs. I hope that people can come to a better understanding of what you are going through and that you start to get better SOON! You will be a great mom one day! I’ll pray that day comes soon 🙂 ❤

  2. you’re so positive and amazing. i actually really relate to the whole “invisible disease” thing . . . when you have mental health issues, a lot of times no one knows unless you tell them. it’s the whole “you don’t look sick” thing – haha, i’ve been struggling to survive every single day since i was 8 years old, and for a long time no one knew except me. so i totally hear you on that. you are so inspirational and i’m also really sorry you’ve had so many health issues to deal with – not in a pitying way, in an i just wish you didn’t have to deal with it way. the blessing is how capable you are of seeing the good in any situation – isn’t it amazing how god can take the crappiest thing in the world and create beauty from it? anyway, this is a long ass comment, but i just basically think you are the bee’s knees. you’re in my prayers. ❤

    • thank you so much katie. yes! having an illness that isn’t obvious is so hard and weird… especially because i DID have cancer i know firsthand how nice everyone you come across is to you. since everyone can tell you’re so ill, you get this compassion and care from total strangers. meanwhile, when people don’t know, they just get frustrated and weird.

      anyways. i’m sorry you’ve been ill for so long and had so much to deal with. eight years old? that’s just childhood robbery =( i’m sorry. i hope that as awareness and understanding of mental illness and all kinds of illnesses spreads things will be easies to deal with for all of us.

      you’re so sweet and bright and positive, and yes! God does make the beauty shine through from the darkest of places. it’s all part of His amazing love for us.

      hang in there katie, love you!!!

      • love you too!!! yes the first time i contemplated suicide i was 8. i think of that now and my heart just breaks for that little girl, you know? i just want to hold her. anyway . . . that must be such an interesting and unique perspective to have been on both sides of the visible/invisible illness thing . . . you should write a book! 🙂

    • i just read the spoon theory, I LOVE IT! thank you so much for sharing that with me! i can’t imagine having lupus and living day to day like that. whew. intense! but i love that theory. i was explaining the gist of it to duggs and he got it immediately and totes agreed that it’s how it works. thanks for sharing!

  3. Although my experiences pale in comparison to what you’ve been through, I can relate to the “invisible disease” thing. Celiac has been wreaking havoc on my for years now, possibly my whole life, but I wasn’t diagnosed until January this year. I felt like such a loser over the past 5-6 years going to the doctor as often as I did only to be told that my tests were normal. Friends and coworkers probably thought I was just being lazy half the time, or a hypochondriac. I felt so horrible, but since the doctors couldn’t find anything wrong with me I began to think that feeling horrible must just be what life is like. I can’t believe the level of pain I was in day-to-day before it was finally figured out!

    Although I still have a long road ahead of me while my body tries to heal itself and undo damage, it was amazing how different I felt within days of going gluten-free. Pains that I took for granted as “life” magically went away (apparently it isn’t normal to have a headache everyday or have your neck and shoulders pulled tight constantly). However, even though I now have the relief of knowing what’s wrong with me, I still feel self-conscious about my symptoms–like I am expected to just “buck up” and push onward. “Tough it out.” I feel like there are people who think I exaggerate my symptoms to take time off of work, or to excuse myself from a social event. The worst, as you addressed above, is the criticism that results when folks see you fine one minute and sick the next. Without any “proof” it’s hard for them to understand what’s going on.

    I think you have the best attitude in the world. It’s ok to share your frustration too though. I think it’s admirable that you don’t want to be a Debbie Downer, but I know for sure there’s at least one person out there who is more than happy to kvetch with you about symptoms and feeling like bullshit whenever you need a venting session (I only counted myself, but I have a feeling your husband and bajillions of adoring friends/fans would count themselves too). What you’re going through is tough, and it’s ok to acknowledge that. Then go on and celebrate how kickass you are despite your stupid robot (an ex of mine called his body “his robot” and would complain when he was sick or injured by saying “stupid robot”–now I love talking about my body like a robot because it helps me separate pain from my state of mind). You don’t have to focus on your pain or symptoms, but don’t feel like you have to hide them for anyone else’s sake either. Not that I have to tell you any of this because I’m pretty sure you’re just being your true self regardless. 🙂

    Augh, it’s past midnight on the east coast and i’m exhausted and I should reread what I just wrote and edit it to make sure I’m not saying anything ridiculous or insensitive… but I’m too tired to do that, so I’m just going to say that you’re not alone, you’re totally awesome, and I hope the doctors help you find your healthy balance soon so that you can spend even more time being awesome and doing things that make you happy.

    tl;dr Being chronically ill blows. Keep kicking ass.

    • you’re so far from insensitive! stop, you’re fine.

      thanks kat (((HUGS))) i’d love a kvetch session with you sometime. i had NO IDEA you were dealing with celiac and being so ill! i thought with all your roller girl tough chick stuff + school, that you were tackling the world. literally! you’re a super badass.

      i think that we have similar attitudes. it’s okay to be realistic about what’s going on… and sometimes what’s going on sucks, right!? but overall, there’s so much good our bodies can do and we have so much good health to be happy about!

      i hate that “am i crazy?” feeling. it’s the worst. going to the doctor and getting looked at like you’re either drug-seeking or making stuff up in your head. it’s awful. i was working at a clinical in nursing school once and there was patient who was in his mid-30’s and he was having really bad abdominal pain. the docs wrote him off as drug-seeking as soon as his CT scan came back clean. and i felt such a hurt for this guy, such a camaraderie. when i have a porphyria attack, my abdomen hurts so badly – for days, weeks, even longer. and no test will show a thing! no MRI, CT, nothing. the symptom is abdominal paint without etymology. maybe that patient was an addict looking for a fix, or withdrawing… but maybe he’s a guy with a real illness that the docs weren’t taking seriously and he was just getting the brush off.

      and don’t get me started about the collapse of our health care system… and how none of us have decent primary care that can help us diagnos this kind of stuff: these insidious, hard-to-figure-out disease. it takes TIME to diagnos celiac! it’s nopt something a one-time trip to the ER can do. but without good primary care docs, far too many of us use the ER as a walk-in clinic, or like a primary care. ugh. i hate the way our system works now. being in the military health care now, it’s AMAZING. my quality and continuity of care is a thousand times better than it ever was when i was in the civilian world. i should be the poster child for obama-care. i’m living proof that the military (and thus the gov’t) can do a cracker job!

      anyways – now I’M rambling and ranting away.

      love you kat, you’re a total inspiration. we should talk more. xoxo

      YOU ROCK!

  4. Once again, thanks for being open and transparent. I am soooo praying for you and your family.
    I know a little of what you mean. Diabetes is another silent, invisible disease. At least some people understand iot, though.
    But, God healed me of it. So I’m praying for healing for you. Fast.
    Hugs to you and Duggs.

  5. I’m glad that you’ve got some good physicians to help you manage things. There are none in my area at all. I tried to get a nutritional consult, and the woman looked it up online before our appointment. And then insisted I should be on a low-carb diet. Yes, thanks for that.

    I can relate to wishing that people were more aware. I think my husband might be more patient if he really “got” that those times when I flip my wig over nothing at all are actually precursors to an attack. It’s a hidden illness for sure.

    • i can always realize an attack after the fact, like… i look back and see all of these obvious signs and symptoms. but often, in the moment, i just seem like a grouchy, crabby, crampy person! that’s insane that your docs told you to go on a low-carb diet. insane. what kind of porphyria do you have??

      • I have AIP. My doc has looked for a specialist that is close by and hasn’t found one. But the nutritionist really took the taco. She argued with me about the low carb thing. Never went back.

  6. Hi Rosie, I too have AIP, in fact im in the mid-stream of an attack or “episode” as I sometimes call them, ask I am typing to you. Check this out…Its sure to make you relate…A week ago I came home from a stressful court appearance and sat down to tell my kids the story of my day when all of a sudden a could not talk.. This had never been a symptom id encountered before and my brain was saying word the right way but they came out as babble…Id been having dizziness off and on and some face numbness but this not speaking thing scared the hell out of me, and I rushed myself to the hospital thinking great now im having a damb stroke!! (I had been in and out of a “episode” for weeks but im terrible about not addressing what so many people dont GET! So I did a CT and no damage so i asked for them to draw blood for my porphyrin levels and for them to give me glucose…ER doctor said he did not see how my symptoms (i shared all the last 3 prior weeks of regular symptoms leading up to) had anything to do with needing either of those requests of mine fullfilled. He then asked me if i had taken any stimulants that day because my eyes were dilated and that could have caused my speech to leave me.. REALLY!? I walked out with a 700 dollar bill and feeling stupid, hopeless and angry all in one. When I am having an attack-episode, I give them stages in which i refer to as…act 1, act 2 and act 3. In act1 I begin with symptoms that i always never seem to pick up on right away as “entering into an attack” where I ache, feel weak , cant sleep, feverish, no energy and going “down” on into act2 where full sympmtoms keep me isolated withdrawn embarrassed and in and out of pain. anxiety sets in i even feel like I begin questioning my sanity. on to act3 where i begin to get so damn sick of being sick, i feel at bottom and even feel sorry for myself when normally that is completely opposite from my nature. I get angry that this disease interrupts my life my work and then i get upset with myself for not being grateful and happy that i am just alive. But ALIVE is who i am and this damn disease often steals that fullness away from me…I am in a robe on my back patio in act3 right now.. Anyway, thats my tid-bit for the day. But I did wonder if it is ok for you to be in the sunlight.?? I was surprised to read that sun was encouraged for you. I cant even for 3 minutes without becoming really ill. The sun itself will throw me into an episode. Let me know. Have a wonderful day and ill work on the same. Thanks, Coco girl..

    • oh wow, i am so sorry you’re going through an attack and the hospital isn’t even taking you seriously. do you have an emergency protocol? my genetics team made me this amazing ER protocol that i bring with me if i need to go in, and it explains that i have porphyria, what porphyria is, and it explains symptoms i can have and how they should be treated. glucose loading is so very important!! i’m so sorry =(

      i hope you feel better soon. i hope that you can also get something set up between your docs and the ER so that this kind of treatment (or lack thereof) can be avoided in the future.

      i’ve never lost my speech before… but i am starting to experience bizarre neuro symptoms that i’ve never had a problem with before. i have some serious nerve damage on the right side of my face that’s been causing me all kinds of problems. i also have this weird thing where i have a hard time transcribing spoken words or numbers. so if someone speaks a telephone number, it’ll take me a couple tries to write it down properly.

      thank God i haven’t had any photosensitivity issues. i mean, i spend like half my life outdoors, and between florida and hawaii… you don’t really stay away from the sun! i would be so sad. i’m a swimming and i love the ocean, the outdoors. i can’t imagine what having the photosensitivity component would be like =( when i had cancer i had to stay out of the sun because of one of my chemo drugs, and it was so hard for me (and i ignored it anyways, and then paid the consequence of a bad reaction! oops)

      i’m so glad to start hearing from other porphyria patients… it’s comforting, even though i wish no one else was sick. you know what i mean! do many of your family members have active disease as well? thank you so much for reading my blog and commenting!

      i’m actually on my way to the lab today. gotta love all that labwork we must do, haha.

  7. Pingback: 30 Days of Blogging Honesty: Day One | happyhippierose

  8. I cried. I was kicked out of 100 dr offices and told it was all in my head. For 18 yrs. Im 35. Turns out I have ulcerative colitis and acute intermittent porphyria. Found out 6 weeks ago. You described my days & thoughts to the letter. Nice to know I’m not the only one 😛
    Thanks for your post

    • Matthew, thanks for reading! I’m so sOrry that you’ve ‘met’ me under these circumstances – illness, porphyria, being shuffled from MD to MD, thinking you’re crazy – it’s not a fun roller coaster to have to ride.

      But, as someone who has porphyria – I’m so glad you found me. It’s so hard to find anyone else who’s even heard of this disease, let alone someone who HAS it! Well, outside of my family that is.

      How are you handling the news? How do you feel? Do you have a game plan, do you know the/your triggers?

      Sorry… I’m excited and thus bombarding you with questions.

      Since I’ve had my Dx of Crohn’s questioned, I’m curious to know if your GI thinks that your UC could actually be sneaky porphyria?!?

      If you ever want to chat, vent, commiserate, ask questions, whatever – please do reach out!! I’m not shy and I know how overwhelming all this can be.

      I hope you’re feeling okay for the time being. I assure that actually getting diagnosed is the worst part. Not knowing what’s wrong and worrying that you’re insane is effing awful. At least now that you know what you’re dealing with you can work on getting better and staying stable.

      Also, I need to edit this specific post – I know I’ve written on it in a separate entry – but I actually don’t have AIP, I have variegated porphyria. They’re super similar so it’s almost impossible to tell based on symptoms. I finally had a DNA panel done though!

  9. Pingback: Health Update Time: It’s All Good… Well, Mostly Good! | Happy Hippie Rose

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