I spent Saturday in Dallas with my brother. We drove up there for a seminar on self development and although I didn’t let my brother know, I was more excited about the road trip than the actual seminar. It was a four hour drive from Houston. We picked up breakfast on the road and I slept for about two hours before waking up as we passed some vacant Texas town. We jammed a lot of our 90s favorites and chatted about relationships, politics and the universe.

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I’ve been recovering from bronchitis which I caught a little over a month ago, so I still have sporadic coughing fits that leave me breathless and achy all around my chest and rib cage. When we finally arrived, I was hoping that I wouldn’t be coughing during the entire presentation and fortunately, I didn’t, but that’s because I popped three cough drops in the course of an hour.

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After the seminar, we went to eat tacos at a colorful taco spot called Velvet Taco located near downtown Dallas. My brother said it was very hipstery and I chuckled at the thought that he was probably right. I don’t know when the use of “hipster” is appropriate, but in any case, I don’t want to be associated with it. It irks me if I’m ever called that. Oh yeah–TACOS! The tacos were de-fuckin’-li-cious! A mixture of Asian cuisine with the traditional Mexican tortillas (sounds pretty hipstery huh?). I ordered one with chickpeas doused in all sorts of Indian spices and another shrimp taco which was tasty as fuck!

***

As I reached for one of my tacos, I fell into a coughing spell.  I hacked and hacked and heard a crack in my rib. Cough. Cough. Cough. CRACK. Damnit. I know that sound and feeling all too well. Yup, I fractured another rib. I say another because the year before last I fractured three when I slipped getting out of the shower. I think I fractured one last year but I’m not sure how. And I cannot recall how many ribs I’ve fractured in my lifetime.

A fractured rib from coughing is the kind of thing that is common when you have Osteogenesis Imperfecta (OI). I remember a discussion on one of the OI Facebook groups I frequently peruse and occasionally participate in. A guy asked, “what’s the weirdest fracture you’ve had”? One of the most memorable replies I read was a guy who said he fractured his skull while sneezing. I’ve had a hairline fracture on the frontal part of my skull, but at least I got that when I fell out of a car in a drunken stupor. Seems legit, right? Seems earned. But sneezing?! Damn. That beats fractured ribs any day (not that there’s a competition anywhere). Another lady from the group always posts things about her seven year old daughter who has OI. Her kid’s type of OI ranges between the severity of Type II and Type III–the type I have. Well, in one post she mentioned something that her kid had said. It was both adorable and sad. She said, “mommy I don’t get the hiccups. I get the breakups ’cause when I get the hiccups I break a rib.”

So I guess I don’t have bronchitis. I have breakitis. It’s part of the amazing package that is Ms. Mouse, a few broken bones here and there every couple of years or so. I don’t really count the ribs. Those happen all too often these days, for me at least.

What am I getting at? Well, it’s international Rare Disease Day and Osteogenesis Imperfecta aka Brittle Bone Disease aka Lobstein Syndrom is one of the rare “diseases”. I’d rather call it a condition–a rare bone condition.

I thought that this day would be celebrated every year, that it fell on the last day of February, but I just realized it falls exactly on February 29th meaning that it is only celebrated on leap years. I guess the gimmick is rare is only every so often? If you wanna know more you can visit the official website or check out the rare disease Facebook page.

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Here’s the first post I made about Rare Disease Day back in 2012.

 

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Sexy Surgery Gone RIGHT!

November 18, 2012

Oh yes, it was a successful surgery and very sexy indeed.

The lovely Sara Draws brought this sexiness to my attention. This was the COMPLETE OPPOSITE of the not-so-sexy surgery gone wrong two years ago.

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Tomorrow will complete a week since my jaw surgery. I have therapy with Brunet Young at eleven then have to go to the hospital, which is fortunately nearby, for my follow-up on the surgery.

Maaaan, I just can’t believe how well it went! I keep gloating about it. In fact, on Wednesday I believe it was, I started crying uncontrollably in the shower. I realized the tears were tears of relief–purifying tears as a dear friend says.

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It went something like this:

I panicked Thursday and called my therapist, Brunet Young. Cried Sunday. Woke up Monday to face what I had to face on my face. I had to pee in a cup for a pregnancy test, put on robes that were four times my length and three times my width and put on my cap. All I could think of was how horrible it was last time. How I woke up with lips so swollen that they blocked my nostrils; how they told me my jaw had split in two; how I’d had a plate inserted to hold it together, a plate which was later found misplaced, sticking out of my skin; how my mouth was wired shut for four months, and how it hurt so much for the last two years, ugh… It all came back and I tried my best not to panic.

One of the docs slipped an IV into my vein and I got drowsy. But I guess I was so nervous that I didn’t fall asleep. They rolled me  into the operating room and there, with the oxygen mask, I finally closed my eyes.

*****

Young male doctors caressed my face then made a small incision in my outer cheek and a larger one inside my jaw. They then unscrewed the screwed-up screws.

“P, P” a voice near my ear said, “Everything went fine.”

I faintly smiled and with hazy eyes and blurred vision, I moaned, “Man, I had the strangest dream.”

“Really? A lot of patients get that from anesthesia. What was it about?”

“I have no idea.”

And I fell back into sleep.

I lied with blood on my hair and dried flakes of blood on my neck while a cute bearded nurse-boy asked if I wanted a suction tube in my mouth.

“Oh yes, yes, please” I replied in short breathless mumbles as he inserted it in my mouth and I sucked.

Yep. The surgery was soooo hot!

I now have hopes that my face will go back the way it was two and a half years ago, before all this mess. Or that the pain will go away at least. I know that the Bell’s Palsy has affected my left side which never fully recovered, but I’m okay with that now, really. I’m ok with my face not being symmetrical now.

My face looks good as new. And it’s been less than a week! It still hurts, but surprisingly this pain is much, much more tolerable than the pain I had with the plate BEFORE the surgery (this second operation, not the first).

I know it will heal this time because there’s no broken bone, no obstruction, no metal sticking out the skin to prevent the wound from closing properly.

I just have hope.

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Hope is the thing with feathers,

That perches in the soul,
And sings the tune without the words,
And never stops at all.
~Emily Dickinson

JAW(S)urgery! AAAAAAaah

November 11, 2012

Insert Jaws theme song.

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I find it funny (in a dark kind of way) that a few months ago I tried to snuff myself. Today that seems remote. BUT… I’m having surgery tomorrow. It’s one of those, “oh, I’ll make a long blog post about it some day” but then never get to it kind of things.

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I think I’m going to die, not because of the surgery, but rather because I fear my rage will exceed the capacity of my heart and I will thus have a cardiac arrest, or an aneurysm or some kind of… Ugh, I will not indulge these thoughts.

Tomorrow, a plate will be removed from my lower jaw. It has five screws. See.

****

my jaw

Yep, that’s my jaw. See the plate on the left (your right) lower mandible? It has five fuckin’ screws. See them? And see my nose ring!?

This is partly the reason why I’ve been having so much pain in my face/jaw for the last two years. That and the nerve damage ’cause by the procedure, oh and the fact that it is still sticking out in the back of my throat–they didn’t seal it properly. Yep. Also, I had the worst episode of Bell’s Palsy on that side.

Turns out that when I –it’s a long story. Trust me, I’ll get to it someday, a day that is not today.

Turns out that when I had a cyst and the back-most molar tooth removed, my jaw was fractured. I have brittle bones/Osteogenesis or OI as I’ve mentioned before. They knew this but probably had no experience working on someone like me.

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It was supposed to be a simple day surgery. You know, minor operation, go home same day. But nope, I woke up in the ICU (intensive care unit). And I woke up looking like THIS GUY:

Alright, I didn’t look EXACTLY like ‘ole Sloth here, but I did look like his sister–if he had one. It sucked. My mouth was wired shut for four months. I had what they call “poor man’s braces” to keep the wires on and they tore at my gums. I only ate liquids and soups my dad made for me. I couldn’t look at my face in the mirror for nearly six months. And well, the pain. The pain. The pain.

Hopefully tomorrow much of this pain will be relieved once the damn titanium plate is out of my jaw.

I know you’re probably wondering, “But P, why didn’t you tell us before?!” And I know I’ve been neglecting this blog and your blogs, but that’s because so many things are changing. It is what it is. This blog has meant so much to me and your support has kept me through this year.

I barely found out about the surgery on Thursday when I had my doc appointment (that’s when I took the photos above). I had hoped to schedule it ASAP but I didn’t expect for them to schedule so soon. MONDAY! I’ve put this off long enough though and I’m going through with it!

My therapist Brunet Young has helped me prepare for this. I had a panic attack on Thursday and earlier today but I’m good now. And I’ll most def’ appreciate the support!

Oh and my family was such a HUGE support today. Bro came with his girlfriend and we watched Children of Men (one of Monkey Man’s favorite films). Bro’s girlfriend, N, brought me donuts and some soft slippers! So that has eased much of the anxiety. That and the fact that I took a Clonazepam and Tramadol earlier.

I gotta be up at 5am. Night.

Mouse Love

Those of you that have been with me here on WordPress since the birth of this blog are already familiar with the rare connective tissue disorder I was born with: Osteogenesis Imperfecta (OI) aka Brittle Bone Disease.

As I started writing this blog, I realized I wanted to explore the relationship between chronic illness and mental health. I wanted to share how the two have blended in my own experience. To an extent, I’ve done that, though not as much as I’d like. And when I found out about the BPD diagnosis, I began to look deeper at how my medical condition has been a factor in my development of “BPD symptomatology”.

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The first therapist I went to see in 2008 was more of a general counselor at the university. Her specialties were not relevant to my mental problems. But it was because of her that I was able to accept the fact that I’ve dealt with a lot of traumatic experiences.

“Your mother has been abusive to you P,” she said quietly, “and on top of that, you’ve had to deal with a lot of medical trauma. Give yourself some credit! You deserve it. Don’t you think?”

I’ve always refused the thought of being a “trauma survivor”. In The Buddha and the Borderline, Kiera Van Gelder says something I completely connect to: “And while I still resist seeing myself as a victim of trauma, it’s becoming clear that I have some lingering unresolved issues…”

Lingering and unresolved. Don’t we all have some of the lingering and unresolved?

I think about what I deal with on a day-to-day basis–the triggers, the anxiety, the high-voltage electric current of emotions and suicidal ideations. I start to connect things. For example, I’m easily triggered and flinch with certain things that remind me of past fractures. If my brother does a sharp turn while pushing me in my wheelchair, my heart leaps, then stops. And I instantly get a chill up my spine. When I protest, he reassures me by saying, “Don’t worry. I got this shit Shorty. How many years have I pushed you?” I know he won’t drop me or let me fall, but my reactions are like clock-work despite my best efforts. I’m beginning to think I may have a form of complex post traumatic stress (C-PTSD), something very common with those who also have BPD (borderline personality disorder).

I think of these last seven months.

When February hit, I was already suicidal again. But then I came down with Bell’s Palsy. And then I broke my T-Rex arm less than a week after playing a prank over at Monkey Man’s apartment. All hell went loose in my head after that. I mean, the Pretty Little Demons had their way with me, leaving a wreckage in my head. I’m glad and lucky to have survived this last “episode” thus far. And though it feels like it’s lessening, it’s far from over. I’m not out of hell yet; I’m just in the suburbs now. Hopefully, I’ll be able to drive farther out of it when I start therapy Thursday (yeah, we rescheduled yet again).

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It hit me hard, the fracture. Those first two months after the fracture coupled with Monkey Man L’s death were too much. And it hit me not so much because of the physical pain. I deal with chronic pain; it fucks with your life, but it is what it is. And what’s funny is I can talk about that pain with people but I can’t talk about the mental/emotional pain even with those closest to me like my brother.

So what hit me most about the recent fracture was the inability to do certain things on my own, things I’ve grown accustomed to doing. I’m pretty independent and mobile despite the physical limitations, so not being able to do things as simple as getting into the shower on my own ( it was hell waiting on my mom to help me wrap my cast in a bag and carry me in everyday), plunged me to the bottom quicker. I hadn’t broken a limb since I was sixteen, so even though I’ve fractured dozens upon dozens of bones, it all seemed new.

It’s amazing how quickly we forget the intensity of the pain once it’s gone just as we forget we ever experienced joy when in the midst of deep depression. I also find it amazing how a new life seems to emerge out of these deep dark cracks in our lives. Mine has many, like the Grand Canyon. I don’t know what life I’m in at the moment. Life number ten or eleven?

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Anyway, as I mentioned in Whiskers and Lashes, I’ve had a ton of cartooning ideas milling around my head but the Mouse hasn’t been able to catch one, even with my rebirth and the PLDs quieting down some.

One of the ideas I have is a little comic strip explaining OI, like “OI 101: Adventures of Mr. Healthy Bone and Mr. Brittle OI Bone” or something silly like that. Then I started thinking about the mad anxiety I’ve been having lately–the damned morning panic attacks that have been waking me.

Little P and Little T circa 1993-4. my dad left this on my desk last week. He must’ve found it while working in the garage. The furry guy riding behind me is Tito, the one I found huddled with pigs in a pen at the Mexican flee market.

I’ve struggled with loads of anxiety since I was a child; it’s only now I’m beginning to realize it. Chronic indecision is often reflective of high anxiety levels. When I was fitted to get my first electric wheelchair (see picture), I remember sitting in a physical therapy room with a giant binder full of samples and a tall man (all men are tall to a tiny girl) flipping through sheet after sheet of fabric colors. I got dizzy looking at what was to me a monolithic block of color. I got physically ill from looking through. I wanted to cry because the choices overwhelmed me as they do now. Would I make the right choice? Who was I do decide? Pink is always for girls, why? No, I like the blues! Why do they keep asking about the pink?

“Can’t I just have all of the colors!?” I finally yelled. They had a rainbow-colored option for the belt which the man kindly suggested!

But I digress.

For the last few weeks, maybe a month or so, the deep depression–the core of it–seems to have lifted, mostly. It has lifted to the extent that I feel as though I’m emerging from that hell, shedding a layer of skin and climbing back up from the grave of that ninth life. But with this emergence something else has come up–increased awareness of the jaw pain.

Funny enough now that the emotional pain isn’t at a constant crisis level, I feel the physical pain coming back. It could also be the anxiety that’s tightening the muscles on my face and causing the pain to return. (My arm still hurts but that’s not as disturbing as the jaw pain.)

Ugh, the fractured jaw and nerve damage incident! Talk about fuckin’ trauma. They jacked up my jaw! I’ll have to write out that story some other time.

****

Several days ago, I ran into a comment on one of the Osteogenesis Imperfecta (OI) Facebook groups.

“Any of you have horror stories from the past, from the hospital, from doctors and nurses and such?” the group’s creator asked.

Replies came in almost immediately. I replied that I’d waken up during the end of a surgery in my femur, among other things. It’s a surreal experience being a twelve-year-old, waking up naked (with the exception of a tiny towel over the crotch), surrounded by half a dozen doctors and nurses covered in blood and tubes and beeping machines closing in above your head.

I sat there thinking, Horror stories? Hell’s yeah I got them. I got Post Traumatic Stress up my ass! (Literally, my bum’s been messed with.)

A mom in that Facebook group has a little eight year-old girl with type II OI (I have type III). This lady is on there chatting away as much as I’m here in WordPress. She’s constantly talking about her little one. The girl has broken over 500 bones! Jeezus! I think I just barely passed the 100 mark. But 500? I can’t imagine, or rather, I don’t want to. I wonder how many of us have PTSD from just the fractures alone! Monkey Man L was having his leg turned for an X-Ray when, BAM, they SNAPPED it in two. It was already broken and they just added another break! All more reasons for me to think of this PTSD and BPD correlation.

So, on Sunday, I started researching: “Post Traumatic Stress Disorder and Osteogenesis Imperfecta” and “Trauma and Borderline Personality Disorder”. I found some interesting things, but more on that later. 🙂

Yep, that’s me. I think I was three years old in this one.

I have a bisphosphonate infusion to look forward to tomorrow. It’ll be the second time I get one. Wish me luck!

Much Love from the Mouse

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Oh and here’s some info on bisphosphonate therapy for osteogenesis imperfecta.

As many of you may already know, I have brittle bones disease which is scientifically called Osteogenesis Imperfecta (OI). As a result, I’ve broken roughly 100 bones in my life, stopped counting after 70. I was born, or rather already had 17 fractures before leaving the womb.

Infants with type II OI, the most severe type, generally die from a collapsed lung, pneumonia or heart complications because the rib cage is so frail. Some die during birth or are stillborn with disconnected spinal and cranial bones.

I have type III, so I’m a little stronger than those with type II and fortunately, I can walk short distances while holding on to things. I mainly use a wheelchair, however, I do have a walker and would like to get crutches. Type I is the most common and also the least severe (I know, it’s funny how these are all out of order, you’d think type I would be the most severe).

Anyway, if you’ve been following my blog, you’ll remember that I wrote a post titled “Hooray, Phuckin A It’s Rare Disease Day!” and well, this is my promise of updating on the “awareness day” for OI. See, I do keep my promises! Some at least.

Now, I’m not going to place any links or any such things on here because chances are you won’t click (no offense) and I understand and don’t blame you because considering how many good blogs are out there, how crazy and fast paced life is, there’s just not enough time to read up on these things, especially some depressing disease. Who wants to know about diseases? They’re fuckin’ depressing man!

Really though, it’s not that bad. (HAAA, yeah, sure P). No, it’s not. I mean it’s not lethal like cancer or anything… wait… type II… nevermind. The case is, I’m going to keep my OI brothers and sisters in mind today.

As of today I’m also going to make a commitment to write more about chronic illness/disease and its relationship to mental illness (though I don’t like to use the term “mental illness” much). Anyway, there is a huge comorbidity there folks. For example, it’s no surprise major depressive disorders (MDD) are more common in a sample population of people with a chronic illness than in an otherwise “healthy” population. This to me, shows a high relationship with the psychosocial aspect of mental health.

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So here’s to the little OI kids with little mangled bones all around the world! Keep on truckin’ little ones! Keep on! Keep on!

Wishbone Day is May 6th. It is held internationally in various cities to raise awareness and funds for Osteogenesis Imperfecta.
for more info visit http://www.wishboneday.com or
http://www.oif.org/site/PageServer

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addendum: Yous guys ever heard of the film Unbreakable directed by M. Night Shyamalan? Well, this Shyamalan guy is one I can’t seem to figure out. He’ll do one good film and then two terrible ones. I’m not going to say Unbreakable is TERRIBLE because I’ve never actually seen it and therefore, it would be very unfair of me to say anything. What I CAN say is that M. Night Shyamalan’s The Happening was a fuckin’ complete waste, bloody rubbish (ya’ll Brits have been rubbing off on me, I swear).

So, back to Unbreakable. (I swear I’m going to make a really good point here if I don’t forget.)

In Unbreakable, the fabulous actor Samuel L. Jackson plays a character–or was it Bruce Willis’ character–whatever, one of the two played someone that had none other than OSTEOGENESIS IMPERFECTA (OI). And, though I’ve never seen the film, I know that at one point they mention he has THE WORST TYPE of OI! WORST TYPE? HAHA! OUTRAGEOUS! If you’ve read this far, you know what happens to most of those who have the “worst type”. I’m a “midget” people! How can one of these two, muscular to built and tall to average-height men have it worse than me? I don’t even have “the worst” type to begin with!

And how do I know this? Because my dear deceased L told me this, and I believed him because he was a movie addict; when he wasn’t poppin pain pill after pain pill, drinking like a sailor and flipping out, he was flippin HBO channels. Also, he had type III OI like I do.

This just goes to show you guys that “REALITY” (whatever that may be) and FILM/TV are FAR FAR APART. And this is coming from someone who ADORES FILM, who DREAMS of MAKING FILMS ONE DAY!

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Speaking of Samuel L. Jackson… My next post will be “P’s First Film Review: THE AVENGERS, a Character Study On the Hulk’s Raging Borderline Personality Disorder” (yes, I am now CONVINCED Sir Bruce Banner aka Hulk is borderline and I can say this without offending because I’m officially certified borderline myself and yes, I’ll take the label and milk it for what it’s worth for now).

Yep, I just got back from seeing The Avengers and did not have a panic attack!

Thanks for reading!

*mouse nibbles*

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addendum 2: I just realized it’s MAY 5th today! Bahaha. NOT May 6th! Oh well, for you New Zealanders I’m not off at least, am I? It’s already May 6th there isn’t it?

I really do think I need to be hospitalized at this point.  NO NO NO P, you do NOT. You will NOT go to a county PSYCH WARD! Nevermind. Shhhht. You don’  heard nor read nothin’ alright. Alright? I’m out.

*le mouse sigh*