Saturday, August 09, 2008

I have Lyrica, and why men shouldn't try and FORCE me into silence.

I have Lyrica. I did not get it from my GP. Linda talked to him, he wasn’t ready to prescribe anything but if I wrote him a paper, including a list of all the pain I felt, he ‘might’ be able to talk to the pain specialist, sometime next week or the week after.. When Linda told me this over the phone this afternoon, I was in so much pain I didn’t know whether to scream or cry. I did a bit of both.

I called the hospital and asked them what should I do, was ER the place for me? They said that if I was in that much pain, then I NEEDED to be treated. No disagreement here. She gave me a number for the head RN. I called and she listened to me and we talked and she told me to go to a walk-in clinic, that some were open until 9:00 pm tonight, that she could tell over the phone I needed pain control NOW. And no, I didn't sound like a junkie but a common condition, needing pain control while waiting for a pain specialist. She said the walk-in clinics just want to move you in and out, make some money.

The walk in clinic nearest to me was open until 8:00 and Linda had just arrived home so I told her we should go now, before my nap. I looked like crap. I wheeled in, the pain so bad I forgot the postcards I assembled to bring with me, that level of pain where connecting thought A to thought B just never happens. They put me in a room and the receptionist talked to me. First, she just couldn’t BELIEVE I was in my thirties, and kept saying, “No way!” (considering I was pasty and my arms were different colors I think that was a compliment). Then as her boyfriend was in school to be a neurosurgeon, she wanted to know about my condition but kept saying, “That’s crazy” or “Totally crazy.” About my various conditions (or that my arm was turning green due to the heat). It was obvious she didn’t know this was a terminal condition and was going how it was, “like totally tragic” that I was in a wheelchair.

The Doctor kept going by but never came in, he literally saw every other person who came in after us before he came in. He just kept staring at me and then walking on. Okay yes, in a wheelchair, face totally white pasty in pain, one arm with reynauds to the shoulder, the other purple. I guess he figured I wasn’t a 10 minute case. When he came he said we had 3 minutes to tell him my condition and why we were there. He ignored me after it became clear my speech was slower because of problems remaining from my stroke. He kept trying to put down that I had MS. He had never heard of MSA or autonomic failure, but he had heard of Lyrica. He prescribed me enough for a month and we were OUT OF THERE. That means that I can go back to my GP and say (hopefully), “We have been using this and it works!” (this is how we did it with the heart medication) and we get a lecture about how that isn’t the way it is supposed to work but then he renews the prescription. It turns out this is like the Pro version of Gabipentin (sic) which I tried but gave me heart and BP problems as a side effect. This drug is next generation, better and has less side effects.

The nurse was right, I had the script and so off I went. I put in the prescription and then off to bed, and then up an hour later, not fully rested but to get Linda ready to post the mail tomorrow; 17 postcards and 12 or so ‘surprises.’ Also the receipts of things I am expecting and hoping are in the Post office box.

I take my first Lyrica pill tomorrow morning in case I have insomnia (rare side effect), which tonight would put me in a seizure quick, but if I can’t sleep tomorrow afternoon for the first time in 18 months, I will figure out what to do then, and can survive that. But I hope that in 2-3 days I will have significantly less pain. I can double the dosage after three days. What was strange is that the pharmacist and everyone else, I think even the doctor, just LOOKING at me didn't see a problem with me on morphine or other more, effective opiates. But my GP treats me like this whole anemia, autoimmune disease, peripheral neuropathy and the rest is some excessively tricky way for me to scam him into giving me hard drugs. It makes me feel like a criminal every time I take a pain pill. So thanks to a RN who actually gives a damn and a phone operator at the hospital who gave a damn, they showed me to the back door to getting Lyrica.

I hope in a few days my blogs will be about the good parts of my life, the funny parts. Because this doesn’t seem very funny to me right now.

I was literally insane, planning to take a hammer to my GP’s visit (he said that if I came to an appointment next week and explained it to him myself he ‘might’ think about my pain control). He burned a lot of trust bridges. I needed him, bad. He ran and hid. I don’t forget that. If he was concerned, as he was the last visit, to call and have an emergency visit and drag me down to his office because he felt ‘threatened’ because as he said, I was intellectual and can be abrasive. So, my GP feels the girl is just too intelligent and demands accountability? Maybe there is someone on his board of directors who would like to ask him (instead of the female patient), why he isn’t meeting the FIRST mandate of the non-profit society, Cool Aid of Victoria: The purposes of the Society are: a) To respect the innate value and autonomy of the individuals we serve and to provide for their essential needs.

Actually anytime a male doctor (or any doctor) calls in someone who is sick and ill and he knows that and HASN’T treated them but wants to tell them that they better not THEATEN him with their INTELLEGENCE any time soon... Well, let me tell you doctor what I told the last person who tried that threat: “You had better hit me and hope I am unconscious so you can rape me. Because if you plan me to scale back my brain so you can feel more a man, then you need to find another planet or line of work, you arrogant, sack of insecurity. And isn’t rape what men like you do, when you can’t shut women like me up. So either make your move, or shut it and accept that I MAY be the bigger brain in the room.”

If someone in the Hague is reading this and has an empty slot on human experimentation, and crimes against humanity for a trial; I can testify of one doctor who treated me in a way it is illegal to treat a dog in this province.

Postscript: This post was written after 16 continuing hours of pain. Pain which stopped me from sleeping, and pain which made me unable to open doors or turn on lights. After a week of pain. And after I had to spend from 4:30-7:30 pm, fighting and going to a walk-in because my GP had called to say he 'might' give me some pain control IF I wrote what he wanted and IF I came when he wanted....four days later. So no, I suppose the end of this post wasn't very rational, except in the way people who are under pain and a form of dictatorship keep themselves going, stop themselves from being broken. Or let me put it this way, imagine being in labour with a baby for a WEEK then have the doctor look at his watch and tell you he might be able to get back to you to deliver that baby in four day and think about how you might feel about that doctor in the next several hours, knowing it is just YOU and the PAIN.

16 comments:

SharonMV said...

Great! Glad you went to the walk-in - the nurse gave you good advice. I hope the Lyrica helps & soon. When i first started gettting sick with infections all the time (& was having my passing out/fainting episodes), I practically lived at a nearby walk-in clinic. They were actually quite good medically & one doctor there was really good & good to me. Never had a problem getting antibiotics, as it was always quite apparent that I was ill. Wish the doc you saw had treated you better, but at least you got what you need.

Sharon

Queen Slug said...

I am so freakin' glad you got the Lyrica, now we just hope it works a charm on ya.
:D

Neil said...

No matter how you obtained it, pain control is a GOOD thing! And I thought you GP was doing well for you, and might prove his worth after you seizured in his office. Or were you faking it again, dear niece? (interesting; I've seen seizures, and I can NOT imagine someone faking one. Not possible, I'm sure; at least, not convincingly possible.)

As for you having a bigger brain, just remember that size doesn't mater - it's how you use. Obviously your doctors aren't using theirs for your benefit. And if he feels threatened because you complained about poor treatment from another doctor, perhaps he should realize that you want to try to treat your disease, and not dance from appointment to appointment, playing silly buggers with the medical profession and wasting your time and taxpayers' money.

I hope that you can have a little bit of quality in your life soon,. May the Lyrica work, and work well!

Zen hugs,
Neil

yanub said...

Yes! Fight back! I hadn't thought in terms of him being a rapist, but it fits. He has acted as just another of your abusers, and it's hard for me to see how you would be worse off without him. Your doctor is a complete and total bastard. I find it hard to believe that there is no one else in all Victoria that you could see. I hope the epilepsy society can give you some leads to doctors who aren't vicious, malpracticing fuckwits.

Dawn Allenbach said...

OOOOOHH!! It pisses me off when men are threatened by women with intelligence. *sputters and fumes* I'm so mad I just LOST my intelligence.

I'm so happy you now have some Lyrica, and I hope hope HOPE it provides some relief. YAY to the operator, YAY to the RN, and YAY to the doc who wrote the script despite kind of being an ass.

Wendryn said...

Your doctor sounds like an ass. I really hope the new pain meds work out!

I've often found RNs to be more useful than doctors. They have enough time to actually listen, even if it's only two minutes longer than the doctors have.

Good luck with the new meds!

FridaWrites said...

Congratuations on the lyrica script, and hope it works like a charm!

I've probably said this already, but I still thank God for a doctor at a walk-in clinic I went to once on a weekend needing relief from spine pain that was making me shriek. I don't know how she knew I wasn't faking since the weekend urgent care visit is a common ploy and the on-call doctor wouldn't prescribe something that would work, but she did. Since I needed to get on a long flight in 2 days, I needed to calm everything down. And it calmed it down and I got on the flight.

As much as I've complained about my doctor's Louise Hay kick, he does see the need for appropriate pain relief and tried many times to suggest more effective drugs before I had no choice. And he treats me for my illnesses. He's not neglectful, which is more than I can say for some docs.

Elizabeth McClung said...

Sharon: Yeah, the nurse seemed to care and didn't seem to think I was an addict at all, I guess having brain damage could convince a person either way. I used this clinic before when I had NO GP for several months as no one would take me on (which is when I begged Cool Aid). I just find it odd that the doctor, two people on the phone, the pharmacist, the doctor administrator can all see I am in extreme pain but my GP can't - does he have some severe sight damage I wonder?

Queen Slug: Oh me too, as I don't know what I am going to do if it doesn't; I mean do I go back to the same clinic - also to find a drug that reduces seizures AND eliminates pain is difficult. I know there are side effects on this one and I hope I don't get them, but the side effect list for most anti-seizure meds are long and scary (25% experience frequent vomiting, 21% experience constant nausea....)

Neil: Right now, in slightly less pain, I am not quite so thirsty for the GP's head. I will use him to fill out more paperwork, and push him to get a endrocrinologist to fix my thyroid as now my hair is falling out very quickly. But I am also going to tell him that I think he handed what was an emergent condition badly and see what he plans to do to change. Simpy "watch and wait; and repeat until someone comes and tells me what to do" is a okay strategy for a first year resident, MAYBE, but not for a GP in a front line, clinic for addicts, homeless, people with AIDS and terminal conditions.

As for him feeling threatened, This isn't a White Coat brotherhood/sisterhood thing, and there are Crappy doctors, I have always felt in my jobs and in government or jobs where people have lives in thier hands that there should be MORE oversight, not less. That HE should have been the one to say, "This kind of treatment you have been recieving is unacceptable and you should make a complaint at least to protect the next patients". The man has prescribed me NOTHING, why is he so worried, becuase he KNOWS he should do more? Why does he keep saying, "Well, I can retire, they can't do anything to me." These are not phrases that reassure me of a person who knows they are doing the best practice in their profession.

Yeah, now I take the drug and wait and see what kind of hallucinations I get.

Yanub: YEah, well, I added a post script to explain my state of mind. But when people try to shut you down or shut you up becuase you are threatening them because of your gender and intellect? Geez. That's the kind of garbage I expect from a mechanic, not a doctor who has a patient with up to six serious and life endangering illnesses - you would think, finding a solution or treating any of the problems would be first priority not, "I don't think your demeanor is appropriate for your station in life" ACk!

Yeah actually now that I have a sort of "big name" recognized disease like epilepsy I might be able to use the society to get a more specialized GP, at least for shared consult.

Dawn: Oh, have you been caught acting inappropriately unladylike by actually understanding men's conversations and asking questions again?

Yes, I REALLY, really hope that this, like the heart medicine just WORKS without any side effects.

Wendryn: You first sentence sums up the entire post exactly!

Finding someone who actually cares that you are human and might be scared, in pain, worried, etc, is startling after being in the system, but I am glad I found them.

Frida: Me too - go Lyrica! Less Seizures, though I woke with one on my left side of my body last night.

No, I hadn't heard that, or don't remember (good thing about brain damage and seizure, you can tell me the same story over and over and I am still amazed), yeah, that sounds like not just pain control but fear and anxiety control and I am glad the doctor dealt with it.

Right now, I feel that if started having my head spin and vomiting green stuff in my GP's office, he would observe, write it down, think or talk about referring me to someone, do so a month or two later and refuse to treat it (Linda: "Our walls are green and now her head is on BACKWARDS!") until the specialist in exorcisms can see me.

FridaWrites said...

You know how bad my short term memory is sometimes? I had to look up my own comment to remember what we were talking about. Well, it was straight pain that time--I was just off one flight and about to head off on another. Travel's physically difficult for me but I like it otherwise. The airline seats kill me, plus there had been the luggage dragging and lots of city walking (San Francisco).

You know what? My rule is always people in wheelchairs first, and this would go for any situation, because I see how difficult it is for them to be there! At least you got seen, but unfair to make you wait longer.

abi said...

That's great news! I hope it works well, and with few/no side effects.

Victor Kellar said...

I'm glad you got the Lyrical, I hope it can help you, you definitely need it. I don't often comment on the issues you have with the medical system because, well .. I just get pissed off, get irrational too, forget any logic and reason I have and think about showing up in Victoria with a chainsaw and a flamthrower and hunting down anything with a stehascope .. and that is really not helpful

On a lighter note, Collette and I received a package on Friday. Wow. What a lovely surprise, I am a bit overwhlemed, actually. Sent you an email. Collette is out of town but I can't wait to see her face

Thank you. Sincerely

Lene Andersen said...

Unreasonable pain makes you unreasonable.

That said, I'm not sure you were being terribly unreasonable. There's a different pain protocol for terminal people and dude's been treating you with over-the-counter aspirin (well, not exactly, but almost). I understand he can't prescribe say, heroin, given where he works - it'd probably get him investigated pronto. HOWEVER! Then bloody just say so and get you in with someone who isn't under the same constraints. It's called medical treatment. I believe he supposedly has a degree in it.

WOO-HOO on the Lyrica!! Yes, it might make you very awake, but when I used it, I tried meditation techniques to whittle down the brain activity - it can help you sneak around it into a lovely sleep.

SharonMV said...

Beth, sometime I will tell you about my experiences with male doctors over 20 years ago. You would have thought it was the 19th century, not the end of the 20th. I was young & had an HMO (not much choice in that system). I wouldn't even see a male doctor for years until I had once at the walk -in I mentioned in my prior comment, as it was a weekend & something urgent. Luckily, I got a good doctor that time. But then there was also the expert, well-known rhematologist I saw in the early 90s who not only didn't dx my Lupus or any other autoimmune problem but acted like there was nothing at all wrong with me & talked to like I was, let's say less than intelligent. He said "we" feel it's our job to re-assure you that nothing serious is going on. When I asked questions, his response "your case is not "impressive". And he even told me that the ID doctor I had seen at the same institution for a continuous fever of 3-4 months duration agreed with him. After my dx in 2006, I dug out some of my medical records of the time & counted at least 6 of the diagnostic criteria for Lupus and saw where this doctor had crossed out a positive ANA test result & had written "no SLE" across the page. I remember him doing this in front of me at the appointment.


Sharon

FridaWrites said...

Wow, Sharon, wow. That's called being in "denial!"--the dr., not you. Why do doctors think we're trying to "impress?" Good for you for hanging in there. It's difficult when drs. question *facts.*

Elizabeth McClung said...

Frida: I think this was purely an economic decision - see the patient with a child with ear infection means full pay in 4 minutes. See the woman in wheelchair whose face is pale, who has one arm blotching up to the shoulder and the other purple - likely 15 minutes minimum - a low profit situation! Hey, I didn't say he was a saint, it is just his particular interests (making money off of billing the government for quick prescriptions) and mine (needing pain control RIGHT NOW!) happened to parrallel.

Abi: thanks, so far, so good, and I was able to take a nap on it too!

Victor: I understand, Linda has to listen to me shout for 30 minutes and then I have to listen to her. So I thought you might have disappeared but I understand the need in face of such odd medical cruelty to be left either speechless or full of speech that is better not uttered in a church.

I am glad you got the surprise, I am glad it please you. Focusing on things like that is the only way I made it these last few weeks. I felt like I was dying by being skinned alive but I knew part of what I had done was out there, traveling, living.

Lene: Yes, trust me, when I want to be unreasonable, I get very unresonable, apparently I have been scaring the crap out of Linda because I have been muttering curses in my sleep ("By my father's blood I curse you, to live in pain and ashes, by my ancestors blood I curse you..." on and on until she wasn't sure if I or my GP was going to get hit by lighting first)

The stuff about shared prescibing is what we are going to talk about now that I can see straight. And think a bit. And if that doesn't work, go to the board of directors since it was Cool Aid Society which took me on as a patient, not him specifically as a doctor.

So far okay on sleeping, and okay on thinking. Let's see how day two goes!

Sharon: first time I read this I was going, "How many centuries have I been in?" I keep forgetting that I have been in the 20th and 21st century.

My God, what an ass - his actions are almost the same as the case I made against the Neurologist, in that the evidence was not followed, the decision was made before the evidence was found from the tests and thus your treatment was delayed. Where is this ass now, and why don't they ever come back and say, "Hey, really sorry you lived through years of hell becuase I was too big of an asshole to admit that I have giant insecurity issues and would rather other people suffer than I ever look bad." I believe in taking responsiblity and in every job I have had when I make a mistake I apologize (which gets me odd looks because No one in the western world takes responsibilty and apologizes) - but seriously what is it about being a specialist? Or getting that white coat. They think they have lives in thier hands daily? Heck they should see some of my relatives drive!!

Dawn Allenbach said...

Darlin', I have higher than a third grade education, so naturally. I never claimed to be a lady because many times lady = doormat. I am NO ONE'S doormat.

In fact, I actually had the NERVE when working on my masters to take charge of my own research project and not just sit around and wait for my misogynistic asshole male co-advisor to tell me what to do. And when he DID try to tell me what to do, I told him to shove it and did what I knew was right for the project's success.

And my way got published in Environmental Toxicology and Chemistry, so who do you think is laughing now?

I love being an uppity bitch!