brca bullshit

Pinktober Donations: Make Your Money Mean Something!

downloadYou all know how I feel about Komen, right? A charity born from a desire to honor her sister’s memory and support women, Komen has torpedoed itself time and time again (read here, here and here for why I refuse to support them). My biggest beef is with the dwindling percentage of donations going towards RESEARCH. How are we ever going to beat this beast when all anyone focuses on is “awareness” – do you know ANYONE who isn’t AWARE of Breast Cancer?

So, without further soapbox-y ado, here are charities that I support or friends support throughout the year that work hard to do one (or more!) of the following things: a) fund actual research, b) help individuals directly, or c) advance the breast cancer “cure and/or prevention” agenda.

HBOC ( Hereditary Breast and Ovarian Cancer) Charities:

Breast Cancer (and General Cancer) Research and Advocacy Organizations:

  • National Breast Cancer Coalition – they’ve made a committment in the form of a deadline (January 1, 2020) to END Breast Cancer. For a (LONG) list of their Advocacy Successes, click here.
  • Breast Cancer Research Foundation – As they state, “BCRF is committed to preventing and curing breast cancer by advancing the world’s most promising research.”
  • Cancer Research Institute –  In their words, “By making a gift to the Cancer Research Institute today, you are not only making an investment in our scientists to develop better, safer immunotherapies that will extend the lives of cancer patients, but you are also helping us to do that sooner.”

Organizations that Directly Help Women with Breast Cancer:

  • Shay Sharp’s Pink Wishes – Another one that’s dear to me, this organization grants wishes to young women (age 40 and under) who have been diagnosed with terminal breast cancer. Shay is a Baltimore native, and has just been re-diagnosed with BC for a second time, still under 40 years old. She’s done amazing things, and I love supporting her!
  • The Scar Project – This is a beautiful project, and one that gives support and hope to so many women! From the site: “The SCAR Project is a series of large-scale portraits of young breast cancer survivors shot by fashion photographer David Jay. Primarily an awareness raising campaign, The SCAR Project puts a raw, unflinching face on early onset breast cancer while paying tribute to the courage and spirit of so many brave young women.”
  • Flat and Fabulous – F&F is an organization committed to advocating and providing support for those who are living post mastectomy without reconstruction. One of the co-founders passed away last week, and she was a huge inspiration to me, personally, as well as thousands of other women touched by her story.
  • The Red Devils – From my friend Shannon M: “I would like to add The Red Devils as a worthy organization that supports individuals and their families facing breast cancer.” I love the look of them, too!

I’ll add to this daily, so feel free to comment about groups/organizations I’m forgetting! Thanks for being a conscious contributor to progress and change!

brca bullshit

The more things change, the more they stay the same…

I haven’t posted publicly for about a year (not-so-coincidentally, that was about the amount of time it took to plan and have out wedding). Naturally, lot of things are different now! I have a new husband, a new last name (albeit not yet “officially”) and we will (hopefully soon) be moving into a new rental property, with the goal of finding a house to settle down in in the next few years.

I passed the two-year anniversary of my mastectomy quietly, and began seeing an integrative medicine doctor for help with my food allergies and overall health. I removed myself from all prescription medications and began taking supplements to help heal my immune system and my “leaky gut”. I tested positive for a boatload more mutations, all of which are indicative of malabsorption of vitamins, and have been working on figuring out how to compensate for those losses directly. It has helped, but only minimally, and has been really hard to stick to a grain-free sugar-free diet since the wedding cake took me so far off course!

Still, with all those changes, I am in pain. Constantly. Sometimes so much so that I am depressed for my own life and the life of my new (wonderful, supportive) husband. Will I ever be able to have kids? Will I ever be able to walk the dog without a nap afterwards? Will I ever feel “normal” after eating again? I’m hanging in there, and I’m so, so grateful for everything that I have and all the things that are in store for us as a newly-married couple, but I do wonder how much I will be able to enjoy.

brca bullshit

The time my “cat vet” almost killed my cat. For no good reason.

My cat is not well-behaved. He’s not well-behaved at home, on Prozac, so let’s just paint a picture of what he’s like at the vet:

Imagine, friends, a ball of fur/teeth/claws/psychosis zipping from corner to corner and making the most (admittedly comical, although they weren’t at the time!) obnoxiously loud screaming noises – NOT a happy kitty. Unfortunately, he was a kitty that needed his shots… but if I had known what the cost of getting them would be, I would have never taken him there in the first place.

Unfortunately, after a few minutes of trying, and complete refusal of my insistence that I could handle him just fine (and my willingness to sign a release waiving my right to keep my limbs…), the vet gave up and informed me that he would have to be sedated (“boxed”) in order for her to get a blood sample (because they told me he was underweight – which he absolutely was not), give him his shots and clip his nails. Since he lets me clip his nails like he’s getting a manicure, I was already pretty perturbed that they thought this was necessary, but I wanted him to get a good exam, so I relented.

Apparently, it’s common practice to sedate “difficult” cats by shoving them into a Tupperware container and gassing them until they pass out – do they monitor heart rate? Nope. Do they check vitals to see the affect anesthesia might have on them? Nope. They label them as troublemakers, shove them in a box, and turn on the gas. That vet = Hitler.

Needless to say, I was a wreck, and when she called me back to see him, I was ecstatic. It was then that I saw my cat’s almost lifeless body laying on the table. “He’ll wake up in a second,” she told me. 10 Second went by. 20. 30. Then she started shaking my limp cat, and talking through gritted teeth at him, saying “you’re scaring your Mommy, kitty. Wake up….” and looking slightly concerned. She then shoved him in his cat carrier so hard that his head hit the back of the box and handed him to a vet tech to “prepare him to go home” – all the while chastising Jason and I for rescuing a dog that doesn’t really get along with the cats. It was pretty much my worst nightmare, but it didn’t even end here!

Eventually, he DID wake up, but he threw up a bunch of times, he couldn’t walk, he tried to jump on the couch but fell … it was a mess. I called the cat vet’s office and asked if there was anything I could give him to stop the vomiting, and they said I had to bring him back in… imagine my surprise when he acted like a psychopath during the return visit – can you blame him? Anyway, after all that, the vet didn’t even make time to see him, and another vet, after attempting to give him a shot for his nausea, settled on giving him OVER THE COUNTER pepcid. Yes, exactly what I asked for over the phone. I hate these people, and will not be going back.

Thankfully, after a day of disorientation, lethargy and nausea, Fionn is on the mend, and will soon return to terrorizing J, his brother, and his new favorite thing to torment: Otto.

brca bullshit · pain management

Pain Doctor # 1837342

I love him.

Don’t get me wrong, I think he’ll be just as useless as the rest of them, but he listens. He thinks before he speaks. He even *gasp* believes my stories without having to double-check them against every doctor I’ve ever seen (although this may have to do with my BS meeting with him before my appointment – I imagine she gave him a healthy dose of “don’t fuck with her” before she bid him adieu).

He gave me back my valium, told me that my previous doctors were assholes (a fact of which I’m well aware, but it’s always nice to have angry allies), and then lo and behold: my boobs gave a performance!

Right there in the room, my chest spasm-ed in a most excellent demonstration of the hell that I’ve been through (see video below for an older recording, but a similar performance), and his eyes almost bugged out of his head. He called doctors and nurses alike in to see them do their evil little dance, and damn it if I didn’t walk out of there with tons of drugs, but more importantly: sympathy. I really feel as though I deserve some sympathy.

Jason waited in the car while I was in my appointment, and when I climbed back in, I burst into tears. He looked sad, asking “another one?” (assuming, of course, that it was a bad appointment), but I just shrugged and sniffled while he hugged me. Sometimes I think hope is the worst thing a doctor can give to a patient like me, but maybe this time it will get me through…

brca bullshit

How Otto came home

Dana Kollmann – former professor, fellow deviant (in a legal, only slightly unhealthy way), and troublemaker. She was the beginning of this adventure, and we will forever be indebted to her for bringing us this goofy, wonderful ball of joy. It all began when I saw this post on her Facebook wall:

Dana's FB Post About Otto
The Facebook post that started it all…

After seeing Dana’s post, I emailed J, who was, of course, exceedingly practical in saying: “he’s too big and our house is too small”. I continued pleading with him though, because I had a very strange strong GUT instinct that told me that we needed this dog as much as he probably needed us. We were each going through a lot of personal struggles, and settling into a fairly unhealthy/sedentary lifestyle, so a dog was one solution we discussed to get us moving (and J had wanted a dog badly for as long as I had known him). I reminded him of this, and he relented, allowing me to email the woman who posted the initial plea. Below is the email exchange with her:

Emails About Otto
The initial email exchange.

The following day, much to our surprise, our landlord agreed to let us add a dog to our already very full house (for a VERY reasonable pet fee of $20/month) – we were almost positive that he would not agree because he had seemed so adamantly opposed to dog ownership when we signed the initial lease, but very thankful that we were wrong! I enthusiastically updated Dana, and thanked her for sharing the post.

Thanking Dana
Thanking Dana

On Saturday, April 20th, we drove to Middle River, MD to meet Otto. We met Missy and her husband in the parking lot of McDonalds down the street from Otto’s original owners’ house. From there, we followed them to the house, all the while feeling both apprehensive and excited to see this big boy.

When we arrived, the two men that had been “taking care” of Otto brought out a shaggy, skinny, sad-looking dog and I thought my heart was going to burst into pieces – he walked right up to me, licked my hand, then continued past me to Jason, on whom he rested his head, and leaned his (obviously) weary body. The men loaded him into their SUV and asked us to follow them to a local park so we could “see him out in the open” (we now think that this was an attempt to hide Otto’s living conditions from us so that we would not report them). Upon reaching the field, they unloaded him and we sat under a pavilion and talked to them about Otto’s story – most of which we have since determined was one giant lie.

We were told that he was a 5-year-old purebred Shiloh Shepherd, a rare breed thought to be a cross between large German Shepherds and possibly a Malamute line. They explained that he had undergone K-9 police dog training, but unlike his father and brother, had not been selected to be a police dog because he “lacked a prey drive” (these people were idiots – just ask my poor cats about his ‘prey drive’!). They went on to say that their father had retired from the police force after suffering from complications related to Lyme disease, and since both the father and brother had been killed in the line of duty (we are still looking into whether this part of the story is true), they had no desire to keep Otto as a pet – they only wanted working dogs.

Meanwhile, while they were telling us about him, Otto was desperately searching for water on the ground (he was clearly extremely dehydrated), climbing on the picnic table (apparently his go-to sleeping spot in his “habitat” in their back yard), and endearing himself to each of us individually in various different ways. By the time the massive impending thunderstorm hit, both J and I were already telepathically communicating (mostly via pleading looks at each other and Missy/her husband), and we agreed with the two men to come back and get him the next day. After they left, Missy and her husband climbed into our car and we finalized the plans to bring him home with us. It was everything J could do not to follow them that very night and beat them to a bloody pulp – but Missy and I both felt that it was best not to antagonize them until we had him in our possession.

After we left them, I realized that I didn’t take any pictures, so I quickly sent a text to Missy, who replied with (the above) photos. We continued to text back and forth, and discussed how to get his vet records – we were very anxious to remove him from this terrible situation!

Yesterday, Sunday, April 21st, we brought Otto home. He was neither afraid, nor even remotely hesitant to get into the back of our CRV, and perhaps I am making him a bit anthropomorphous, but to me, he looked relieved. Of course the “crate” they said they would provide was rusty and disgusting, so we met my mother at the Catonsville PetsMart to buy him a new crate. He had a very unpleasant accident in one of the aisles after eating a can of dog food after going probably several days without any real food or water, but my Mom and J helped the employees clean it up, and we got him some new things and packed him up to go home.

Otto Riding Home
Otto Riding Home

Today, we took him to the vet, where we learned that he only weighs 83lbs (grossly underweight – according to breed standard, he should be at least 120lbs!), and that he has a skin infection, fleas, worms and probably other issues as well. He did, however, test negative for heart-worm, so we are saying prayers to the puppy powers that be that he will be able to thrive given some TLC (and lots of expensive tests and antibiotics). He’s also still “intact”, so we’ll likely need to get him neutered once he’s healthy.

Welcome home, Otto!

brca bullshit

Kickin’ ass and running miles … back in the swing!

Repost from Facebook:

Just finished Couch to 5K week 1 run 1 with Get Running. Distance: 2 MILES!

I haven’t run in exactly 1 year and 21 days, I have gained 20 lbs and I’ve spent a looong time on my ass on the couch…and yet, I just started at a pace that I had only reached towards the end of the program last year. The human body is an amazing thing. I don’t think I’ve been so proud to be in pain in my entire life.


Update (6/25/13): Aaaand…. haven’t run since. Doh.

brca bullshit

1 year BS visit

I wasn’t excited about this visit – hell, I almost didn’t go, but I was unprepared for what transpired.

The first thing that happened was a lot of unnecessary fussing over my blood pressure. I hate doctors, and I am in constant pain…why do you think my blood pressure is elevated?! When I finally convinced them that this wasn’t the end of the world, they took me in a treatment room and there I waited. And waited. And waited.

Finally, in came my breast surgeon, who I had not even spoken to since the nasty email exchange (to be posted in Terri’s “Letters to Doctors” book), and the look of shame was written all over her face. Apparently, she had been following up, just not with me. The first words out of her mouth were a jumble of apologies and statements of disbelief, but it seems that she believes me now. It only took 14 months.

We discussed all 35,000 treatments and supplements and drugs and therapies I had tried and she finally handed me a piece of paper with Dr. Denney’s name and number on it. “One last pain doctor to try?” she offered. I took it, because I’m not one to look a gift horse in the mouth. We discussed options and then she dropped the bomb.

“Why haven’t we done a breast MRI?”

*beat of complete silence*

“Have you considered having then removed?”

I actually did a dramatic teen eye-roll here (a la the divine Ms. Tina Fey) and heaved a great big sigh as I answered her question with a quote from a previous phone conversation: “I wouldn’t know what kind of MRI to order – you need to see a specialist.” At this point she got that I was irritated and apologized again, explaining that “she’s never had a patient like me before” and “she’s been reading everything she can find for months”. She blinked a few time while I just side-eyed her in my paper gown, and then repeated her question:

“Have you considered having them removed?”

Yes, I told her, and many times I’ve come VERY close to removing them myself. I explained about my new-ish plastic surgeon, and re-iterated that if the other surgeon’s name was even mentioned, I’d strangle her with my hospital gown. She looked vaguely afraid of me by the end of the appointment, but rightly so. She should be afraid. Very. Afraid.

But, I did leave the appointment with a pain doc appt (since they keep ditching me) and an MRI scheduled. It seems that the universe really needs a kick in the ass to jump start it, lately…

UPDATE: My MRI has been cancelled 3x. Still haven’t had one. The medical community’s un-ending bullshit NEVER fails to surprise me.

brca bullshit · pain management · psychobabble


Lamictal is a drug that no one should ever try. Not for the disorders for which it is intended, nor for the off-label uses that are absolutely absurd. My psychiatrist made it sound easy: “it’s a mood stabilizer,” she said! That sounds pleasant enough, I thought, but i wondered why she found my mood so unstable.
As it turns out, the last of the original doctors had finally turned to the dark side: the pain was now officially “in my head”. Somehow I developed a mood disorder from the time of my surgery until now – I’ll admit, I had been testy, tired and depressed from the pain, but wouldn’t everyone?
Still, sadly, I questioned myself and began to doubt reality. A mood disorder had a treatment. A mood disorder could be controlled. Lamictal could be my saving grace! Except it wasn’t – and it could have ended up killing me.
Possible Side Effects:
Call your doctor at once if you have any of these other serious side effects:

  • the first sign of any skin rash, no matter how mild;
  • fever, swollen glands, body aches, flu symptoms, headache, neck stiffness, increased sensitivity to light;
  • easy bruising or bleeding, severe tingling, numbness, pain, muscle weakness;
  • upper stomach pain, loss of appetite, dark urine, jaundice (yellowing of the skin or eyes);
  • chest pain, irregular heart rhythm, feeling short of breath;
  • confusion, nausea and vomiting, swelling, rapid weight gain, urinating less than usual or not at all;
  • pale skin, feeling light-headed or short of breath, rapid heart rate, trouble concentrating; or
  • increased seizures or worsening of your bipolar disorder.

Less serious side effects of lamotrigine may include:

  • tremors, dizziness, tired feeling;
  • blurred vision, double vision;
  • loss of coordination;
  • dry mouth, mild nausea, stomach pain, upset stomach;
  • changes in your menstrual periods;
    back pain;
  • sleep problems (insomnia); or
    runny nose, sore throat.
  • *This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects.

…Ask me how many I had. Go ahead. Ask me! Yes, friends, you guessed it – almost all of them.
Weeks one-three: double vision, sore throat, swollen lymph nodes, intermittent fever/nausea, headache (but let’s be honest, everything gives me a headache) and ACNE. I looked like a hormonal teenager (and felt like one).
Doctor’s visit:
Me: My throat is so sore I can’t swallow – is this related?
Doc: Nope.
Me: I can’t see my computer screens at work because my vision is so blurry. Is this related?
Doc: Nope.
On it went, until week 7, when, at 125mg, “the rash” fears started. This is when I started researching…turns out, you can *die* from a rash reaction, which turns into “Steven’s Johnson’s Syndrome” (i.e. your skin falls off). I told the Doc that I was fearful of all my reactions, and she told me to quit…cold turkey. Awesome. Side effects+withdrawal= a special, special two weeks.
She put me on Effexor, another “special” med to replace this, as I refused outright any other off-label use drugs, and lithium wasn’t even an option in my mind! So, hopefully this won’t make me crazy, too!

brca bullshit

Happy One Year Boobie-versary to Me!

Somehow I thought this moment would be exhilarating – like getting off of a roller-coaster and looking at your partner and saying “whew! wild ride!”… but, sadly, I’m still on the kiddie rides, whining “go faster, go faster!”

This is not the celebratory day that I wanted it to be, but I have managed a few accomplishments in this less-than-pleasant year:

  • I’m coping with the pain without narcotics, and I’m not discussing the pain anymore (with anyone except my doctors, my mother and J – if he really wants to know) – mostly, I’m just excusing myself and breathing through it.
  • I’ve learned a HELL of a lot about boobs. Like, a lot. Way more than I ever thought I would have.
  • I’ve managed to remain attached to the most wonderful man in the world. If I haven’t chased him away yet, I think he’s in it for the long haul.
  • I’ve tried: injections, narcotics, topical painkillers, pain patches, special diets, herbs, essential oils, chiropracty (is that a word?), physical therapy, every exercise I’ve ever found in any mastectomy reconstruction book, meditation, screaming, stomping, yelling … and none of it has worked.

Here is what I wrote on Facebook – the very first time I acknowledged (openly) my surgery, my experience and spoke honestly about it with people who may not have known:


The responses were surprised, supportive, caring and thoughtful. It was a very heavy day, but I managed to find some bright spots (and let’s face it – turning your life into a fairy tale is what everyone does when things suck, right?). Here is what my Facebook friends said:



No matter how bad things seem, someone always has it worse. 

I need that tattooed backwards on my forehead, I think, although I am beginning to get to a place where I can stop, take a breath and remind myself to be grateful for the life that I have.

brca bullshit · pain management · Stupid Baby-Making Parts

Approaching the 1-year-boobieversary… with a whole new set of problems.

I anxiously approach the 1-year anniversary of my mastectomy with the hope that some magic switch inside my body will say “okay, you’ve had enough” and the pain will be gone. Sadly, not only do I know that won’t be true, but that I will potentially have scarier things to worry about…

Let me catch you up:
1. The Palliative Care doctor: Nice, but didn’t offer any solutions except taking amitryptaline (a different antidepressant) and stopping the cymbalta (which I got from my PCP, if I didn’t explain that before). When I went back for a follow-up and said I felt the same, however, he said there wasn’t anything else he could think of — according to my pain chart, I had literally tried everything. End of story: Dumped again.

2. The psychiatrist: saw her shortly after above-said dumping, and she finally went to the dark side. “If all these clinicians think it’s in your head, then maybe we need to treat that first”. I was devastated, as she and my PCP were the only ones who had remained who didn’t think I was crazy. So, end of story, I’m on a LOT of crazy people meds:


  • Lamictal- normally used for bipolar disorder…and doesn’t play nice with my birth control (at 50mg now, but will slowly increase to 100mg!)
  • Wellbutrin- antidepressant that’s supposed to help my sex drive …sadly, it doesn’t work. My poor boyfriend.
  • Effexor- ANOTHER antidepressant…(175mg-just DOUBLED my dose last week)
  • Adderrall XR- the only way I can stay awake any more(?mg)
  • Klonapin- the only reason I can sleep at night(3mg per day)
  • Neurontin- the only legit pain component of this regimen (1200mg/day)
  • And a whole bunch of supplements, teas, extracts, etc. aimed at keeping these side-effect-heavy drugs from destroying me (also, not really working)

I see her again next week, so here’s hoping she believes that I am still in exactly the same amount of pain as I was before. Jason says they make me “easier to be around”, so I guess I was a little mad at the world there for a bit…but I shouldn’t need THIS MANY pills to calm my anxiety, should I?

3. The gyno-onco: After having *excessive* bleeding in the middle of my cycle, and the worst cramps of my life, I went for an exam and the words I never ever wanted to hear came out of her mouth: “you have mass on your right ovary”. From then it was a flurry of getting a pelvic/transvag US, getting my CA-125 done (still haven’t bc I couldn’t find a lab to do it within my network) and then having 4 different people reading it (including the radiologist)!

Nurse 1: “It’s normal”.
My response: “What the fuck does that mean? How does that help me explain bleeding, pain and all my other symptoms?”
Nurse 1:”You have bleeding? And pain? You’re BRCA2+? Let me have the nurse practitioner look at it again.”
My response: “Why don’t you people ever talk to one another?!”
Nurse 1: (silence) “We’ll call you back.”

Nurse 2:”The nurse practitioner said it looks normal, of course, you do have a mass on your right ovary.”
My Response: “What the fuckity fuck?! Why wasn’t that said before? You can’t tell if it’s normal from looking at an US? What about the bleeding?!”
Nurse 2:”The nurse practitioner says to take Advil and two birth control pills for three days.”
My response: “Let me speak with this “Nurse Practitioner”
Nurse 2: “We’ll call you back.”

NP: “It’s very small and they usually go away on their own.”
My response: “So small that the doctor could feel it, huh?”
NP: “Well, she is a very good doctor.”
My response: “I know, that’s why I pay to see her. I would like to talk to HER. I have very specific needs, of which she is aware, and I do not wish to gamble on my life. No more speculation, just have her call me ASAP.”
NP: “We’ll have her call you when she gets in on Thursday.”

Nurse 1: “The doctor has looked at your US and wants to see you as soon as possible.”
My Response: (In my head, I said NO DUH…) “Please schedule me for her first available”

I love nurses, and I admire nurse practitioners, but if I’m going to a specialist, I don’t need everyone and their brother speculating. Of course she wants to see me. Of course she knows I’m bleeding and in pain. Of course she factored these things in when examining a “normal” US of a 30-year-old female. Ugh.

So, that leaves me with just over a week until my boobieversary, with a possible abdominal surgery to biopsy it looming on the horizon. There goes the leave I’ve been saving for vacation…womp womp.

Médaille miraculeuse, protège-moi.

brca bullshit

I have 3 draft posts that should come before today, but my OCD seems to have left me momentarily.

J quit smoking on Saturday, and I am over the moon about it…. but I am really struggling to help him get over his withdrawal. He’s mean and tired and grumpy (all legit, and to be expected), but ever since he admitted that he doesn’t want to tell me when something’s wrong with him because what I’m going through is inevitably worse (which is sad, and I don’t want him to feel like that) I’ve tried to pretend I’m okay anytime he’s been feeling ill.

Yesterday, though, I totally overdid it and I feel like crawling under my desk and dying. I barely have the strength to pick up my arms, let alone use them in any functional way. I just want to scream “OOOOOOOOOOOOOUUUUUUUUUUUUUUUCCCCCCCCCCCCCCCCCCHHHHHHHHHHHHHHHHHHHH” but instead, I will continue (quietly) to do the dishes until my arm is numb, and chop vegetables until I can’t hold my arms above the counter anymore. I know it sucks for him, so I will say nothing to him… but to you guys, I say: O.U.C.H. Only three more days until I see my “palliative care” doctor (another post forthcoming) and find out if he can diagnose me as RSD.

As for J, I am so proud of him – quitting cold turkey is very, very hard, but he’s so damn stubborn, I know he’ll be able to do it. If he can quit, then maybe we really will be able to grow old together – me with no boobs, and him with clean lungs.


Exhausted, Hurty Puppy

brca bullshit

No more surgery.

Finally saw Dr. B this morning, and he agreed with my subconscious: further trauma to my body seems like

  • unnecessary pain
  • could result in further issues
  • may not have any positive benefits whatsoever
  • could insight infection

So, Dali boob is here to stay. BUT, as I was just saying to my mother (about all my doctor dumpers), Dr. B did the “good doctor” thing: he gave me a referral to another pain specialist, and also gave us two names of nerve surgeons (one in Baltimore at Union Memorial – who pioneered a lot of nerve surgeries – and his protegee at Georgetown) who he assured us were top notch.

The big relief was that right now, there’s nothing “wrong” (meaning the implant being out of pocket is not going to hurt me), and my right implant has not capsulized as much as I thought (although the scar tissue is much worse).

So… same ol’ same ol’ for right now. Time to call the new pain doctor and see what he/she says (the name “Loren” threw me for a loop!). Fingers crossed for the next steps forward.

brca bullshit

Reflex Sympathetic Dystrophy (RSD)

At my appointment at the psychiatrist’s office, just before I’m ready to leave (my prescriptions clutched tightly in my fist), she stopped me.

“You describe your pain as burning pain, correct” asked Dr. M

“I feel like a fucking Phoenix.” I replied

Dr. M: “But burning, right? Any skin sensitivity or numbness?”

Me: “Yes and yes.”

Dr. M: “Excessive sweating?”

Me: Embarrassed, but I answer “Yes.”

Dr. M: “Hmmm…” (at this point I sat back down and watched her do what I knew was probably a google search). “RSD… why do I remember that? Who did I know who had that? Hmmm….”

Me: Is this something to do with my pain?

Dr. M: Proudly producing a printed out fact sheet, she proclaimed “RSD!” and rushed over to hand it to me in her funky studded heeled booties.

Reflex Sympathetic Dystrophy (RSD) Syndrome

Also known as Complex Regional Pain Syndrome (CRPS)

RSD is an older term used to describe one form of Complex Regional Pain Syndrome (CRPS). Both RSD and CRPS are nerve disorders characterized by chronic severe burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling and extreme sensitivity to touch. RSD is sometimes called Type I CRPS, which is triggered by tissue injury where there is no underlying nerve injury, while Type II CRPS refers to cases where a high-velocity impact (such as a bullet wound) occurred at the site and is clearly associated with nerve injury. Type II used to be called “causalgia” and was first documented over 100 years ago by doctors concerned about the pain that Civil War veterans suffered even after their wounds had healed. RSD is unique in that it affects the nerves, skin, muscles, blood vessels and bones at the same time.


Continuous, intense pain that is out of proportion to the severity of the injury (if an injury occurred) and which gets worse rather than better over time. It most often affects the arms, legs, hands or feet and is accompanied by:

  • “burning” pain
  • increased skin sensitivity
  • changes in skin temperature: warmer or cooler compared to the opposite extremity
  • changes in skin color: often blotchy, purple, pale or red
  • changes in skin texture: shiny and thin, sometimes excessively sweaty
  • changes in nail and hair growth patterns
  • swelling and stiffness in affected joint
  • motor disability, with decreased ability to move affected body part

How is RSD Caused?

RSD has no apparent cause. Initially, the condition was thought to be a malfunctioning of the sympathetic nervous system but researchers are questioning this theory. Since it is most often caused by trauma to the extremities, some conditions that can bring RSD about are sprains, fractures, surgery, damage to blood vessels or nerves and certain brain injuries.

How is RSD treated?

Physical therapy is a primary component of treatment. There also are several types of medications that can be used and sometimes elevating the affected extremity may be helpful. There also are surgical procedures that are used in some cases. Treatment needs to be individualized and treatment plans often incorporate several of these measures. Treatment if begun early, ideally within the first three months after symptoms begin, can result in remission. Early diagnosis is the key.

Is there a cure?

Not at this time, but research continues. Advances have resulted in some new and effective treatments.


Ominous, right?

While I don’t have *all* the symptoms, and the burning is more down my side and across the chest (instead of in the extremity), I do have *a lot* of the symptoms.

Plan: Find a doctor who knows what the hell this is and how to diagnose it!
brca bullshit

Who has two thumbs and ain’t gettin’ any doctor love?

One guess.

My appointment with the plastic surgeon has now been cancelled FOUR times. I understand he’s a great surgeon. I understand that I’m not an emergency (to anyone, really), and I understand that his assistant doesn’t have any control over what happens in the operating room… but still. Fuck this.

My Mom took off work to take me! Ugh! Anyway, we’re going to try next Monday at 9:30am – last chance. If that gets cancelled, then I’m done. I don’t really care that much about left anyway… unless it will fix this awful pain.

Also, the court case that I was hoping to be postponed is on like donkey kong – in one week, I will have to stare down my mortal enemy and tell people what he did to me and my coworkers. Grrr.

I have an appointment with my Psychiatrist tonight … I’m pretty sure she’s going to sense the mental breakdown coming on: holidays + pain + no money + not spending Christmas with my family or singing at mass = a giant, awful mess in my head.

This is how I feel right now:

brca bullshit

NYC Long Weekend

Because J’s twin brother K moved to New York City a few months ago, we took advantage of his offer to come play and spent a long weekend with him in Brooklyn. We had a good time, and other than the ice-pack-booby effect, the cold wasn’t even challenging (although we walked SO much that my legs are throbbing…but it felt good!). This was the first time where I made a decision not to let pain stop me, and stuck to it. That felt like an accomplishment.

We got there in the afternoon, but it felt like night time because we had been traveling all morning(DC2NY all the way –this bus was cheaper than the train and very comfortable despite the lack of leg room) and it gets dark so damn early! We ventured out to Sunset Park, where we were treated to a magical view of the skyline at sunset:
J and I had a few squabbles, so it wasn’t the perfect trip it could have been, but it’s mostly my fault, so I’ve got things to work on. Because we had no real plans, he and K basically took me on a gluten-free tour of NY. My favorite place was Risottoria — almost everything was gluten-free, and they had TIRAMISU and TRES LECHES CAKE!
We also went to the “Top of the Rock” at Rockefeller Center and got an amazing view of the city.