Category: pain management

pain management

Pain is pain is pain…

SisyphusRealized2 Comments

…and it’s never going away? What?

I’m facing a dilemma of sorts right now – I have hit what my new pain doctor has not-so-affectionately termed “the black hole of pain”. Nothing hurts more than anything else, so I can’t just point and say “it hurts HERE” (unless I’m pointing, well, everywhere), but everything hurts pretty freaking badly. It was easy when I first started seeing him because I’m right-handed, and the brunt of my pain was on my right side, so I had a goal. But, after four cortisone shots to the areas surrounding my “drain hole” scar, my range of motion has increased and the sharp pains have lessened, putting them on the same pain level with the rest of me, so, now I’m just experiencing a sort of general malaise, and it’s driving me all but mad…

PAIN

Until two weeks ago, I WAS chewing sodium naproxen and ibuprofen like they were candy, but had stopped taking them in an attempt to get my bearings and find out what my *actual*, un-medicated pain level was. In fact, I was officially off all the meds I was taking (except an over-the-counter antihistamine for my allergies), until about 30 minutes ago, when I had to face facts. Really tough, hard-to-hear facts, and ones that I’m pretty sure Dr. D didn’t like sharing.

You see, the reason I’ve really bonded with Dr. D is because he’s empathized with my desire not to be on medication, and he’s been super patient in letting me try alternative treatments so that I can avoid it (plus, I’ve pretty much run the pharmaceutical gamut). So, today, when he examined me and found my muscles to be tight and spasm-y (again), he looked sad when he said “there isn’t much more we can do, aside from medications”. He knows I hate the pillz. He knows they don’t work well for me. He even knows that I can’t lose weight when I take them… but he was definitely right when he said “you can’t live like this”.

Before the appointment, he had gone through my charts from all the other doctors of doom and noticed that I never tried Celebrex (an NSAID, and fairly benign compared to all the other drugs I’ve tried, honestly), so he handed me a box full of free samples. I explained that the reason I didn’t try it during my “I’ll try anything if it will give me my life back” phase was because my insurance had denied coverage of a previous prescription by the first pain doctor, but he reassured me that if I felt even *remotely* better that he would fight with them and make them cover it… so… drugs. Again. Sigh.

I gave in easily: I’m so tired all the time, and if I don’t have a migraine, I have nerve pain or unbearable itching. Sure, my nerves might still be regenerating (I actually think that’s likely, given my increase in symptoms of late), but I can barely stand lying down some nights, and other times I can’t bear to stand up. There’s no winning with this ghost diagnosis, because you can’t treat something that you can’t see… so, I medicate.

My only other option is surgery, and I just can’t imagine how much I would have to work to amass the kind of leave needed to have it again. The leave I’ve saved since the last surgery is going towards a week’s vacation in Lac du Flambeau, Wisconsin to see Jason’s family… even if I did need surgery I’d never cancel this trip, because after all the sacrifices he’s made for me, the LEAST I can do is endure some mosquito bites so that he can see his brothers and parents and go fishing a few times. Still, I do find myself longing for more of a “recovery time”, and I daydream about having surgery to allow Dr. B to fix the implant on the left (which has an abominably long recovery period standard) – or even surgery to have the implants removed altogether. I just want my life back.

But, since my “real talk” with Dr. D this morning, I’ve been feeling pretty depressed. When he leveled with me, saying that it would be extremely hard to lose weight right now, and that exercise is just aggravating the inflammation, I wanted to bang my head on the wall. No winning will be had today … unless the Celebrex works. Then we might be having a different conversation in my next visit…

brca bullshit · pain management

Pain Doctor # 1837342

SisyphusRealized2 Comments

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 · pain management · psychobabble

Lamictal

SisyphusRealized2 Comments

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 · pain management · Stupid Baby-Making Parts

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

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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:

pills

  • 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.”

[Today]
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 · pain management

MRI Results…and getting dumped (by my doctor)

SisyphusRealized1 Comment

My Mom went with me to my MRI so that J could play softball (his only outlet, and dude time – I’d never ask him to miss it, even though he offered). My Mom is amazing, in case I haven’t mentioned it…she (and J, of course) is the reason I haven’t given up on myself or my journey to health. After driving from Baltimore and sitting through my long MRIs, she then took J and I to the Chipotle and wouldn’t even let us pay. She’s the best, seriously.

The MRI itself was miserable-over an hour in a dark metal tube-but they didn’t want contrast, and the tech was remarkably sweet for 4pm on a Sunday, so it wasn’t an entirely negative experience. I was praying that they’d see something – that they’d find the answer in these MRIs I had requested so long ago. Sigh.

I was patient, and waited until Tuesday morning to call (and then again a few more times for good measure) and some random nurse (not even the PA with whom I’ve been working!) calls me to tell me that they didn’t find anything. No one ever finds anything. I asked if there were any other ideas, or if I could consult with anyone else, and the nurse basically said that there wasn’t anything else She could do for me…

I got dumped by my pain doctor.

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brca bullshit · pain management

Cymbalta

SisyphusRealizedLeave a comment

I have a sinus infection. My PCP felt sure enough about it that he put me on a 2week course of antibiotics, although I suspect he did it just to shut me up.

In the course of our conversation, we talked about my pain and the difficulties I’m having and he recommended Cymbalta. I was hesitant, because after getting off of Pristiq, I didn’t want to go on another SSRI that would make me feel like dying if I missed a dose. Also it’s hella expensive…as all good drugs are.
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Eventually, after weighing the pros and cons of it, I decided to take it, because I would do ANYTHING to feel better…no matter how strong a withdrawal it might risk. I asked him how much it would cost, and he told me not to worry, then handed me a grocery bag full of samples – at least 3 mos worth! I felt very lucky, because even though I had to walk almost a half a mile home from the office, it was nice to know that at least one doctor understood my situation and was doing what he could to ease the financial burden. I wish all doctors were like him…

Here goes nothing!