Afraid of the New Doctor

Do you ever get scared to go to a new doctor? I do. All the time. I love my old specialists- my tried true docs. I spent 14 years building relationships with them and figuring out how to work out with each of them AND get them to communicate WITH EACH OTHER. I fly back to a different state to keep some of them them in fact. I miss my nurses MORE even (but dont tell my docs that).

Here in a different state I've started going to new docs and new relationships - but even now I'm seeing new specialists. And I'm scared. I'm on new meds and I'm going off olds ones. I'm possibly doing clin trials - and frankly I'm going to the University here for something and I FUCKING HATE UNIVERSITIES bc they simply cannot have good relationships the way a private practice can. I don't CARE if they are better doctors - There is NO WAY they look at me and SEE ME. They look at me and see a fucking jacked up patient with lists and lists of medicines. AND I FUCKING HATE IT. And all the worst practices in the world HAVE ALWAYS BEEN DONE AT A UNIVERSITY MEDICAL SETTING. I'm not telling people not to go there. And I'm sure some people will claim their lives have been saved there. And I'm sure some people will claim the best treatment. But for me- I LIKE PRIVTE DOCS bc I like to be seen as A HUMAN, not a fucking PROBLEM.

My latest issue is - I haven't had an echo in several years. And I am seeing a new specialist. My old GI doc is in Atlanta and she wanted me to see someone she recommended - someone she liked as an attending. But I'm afraid to go to him too. I pick people based on them, their staff, how they treat me... but NOW I have to go through the whole thing. The process of getting new specialists. I HATE THIS.

I'm high needs - even if I'm not an EMOTIONALLY NEEDY PATIENT. I am a high needs patient. I TRY NOT TO BE. But everything people hate about patients - I am. I have LISTS of meds (some I take daily and others I take prn). I have never had a "family practice" doctor that I just went to regularly for anything more than simple infections etc BECAUSE my shit is so complicated. I can tell they haven't heard of some of my diseases since med school. Or worse, my primary doc said to me, "I saw someone die of that in residency" when she was reading my chart. THANKS. THANKS SO FUCKING MUCH. I GET IT. I FUCKING GET IT. I KNOW SHIT CAN BLOW UP. I'll only go to her for infections and referrals. Thanks. I won't overwhelm her with REAL NEEDS.

Anyway- my primary docs often contradict what my specialist says. And even my specialists contradict each other. So I've worked HARD over the years to find ones that work good together even if they weren't THE BEST IN THEIR FIELD.

I realize YOU might say, "fuck that- I want the best." And fine- have them. But to me - "the best" on paper has always turned out to an egotistical asshole who overlooks my chart, doesn't listen me, and thinks I'm faking because I don't CRY when I'm in pain or I DO CRY because I'm afraid.

Anyway- I have to see several new specialists here and I'm afraid of 2 things. 1) they will think I'm faking and 2) they will say, "let's wait and see"... and to me this has always turned out badly for me... bc if I tell you my left arm is numb and hurting and I don't feel well - I'M NOT FUCKING LYING. I have acromegaly - I'm not sure if this has caused my heart to enlarge or it is simply making my soft tissue and ligaments hurt - like wrists and arms etc. And bc of lupus I get pericarditis and pleurisy all the time. AND I'M NOT SURE what's going on. I'm SORRY I'm not an expert enough to know. AND I'M SORRY that it is the complex nature of my health that they intersect. But one specialist here said, "I really think you need to see a cardiologist right away." But of course, I'm terrified the cardiologist will be a jerk.

I know from past experience that he's likely to run an ecg see normal and tell me to stop whining. And you know what- I'M NOT FUCKING WHINING IF I'M JUST REPORTING MY SYMPTOMS. I DONT WHINE.

So there. It is past abusive behaviors of doctors that so terrifies me. And a little of the unknown of the future. I don't know what I'm going to find. And I'm replacing so many specialists right now - ONLY the ones I can't keep - the ones I NEED here. I still fly back to Atlanta to see the ones I don't need to see regularly.

I miss my doctors in Atlanta. And I'm glad I've found a few good ones here. But I have to say- somedays - I really get tired of being THE NEEDY ONE. I really do. I wish I didn't HAVE to go through this. You'd think I'd be over the fear. But it is like starting school again - seeing a new doctor - knowing they have the power to be mean - and the power to tell me I'm a liar. And I KNOW FROM PAST EXPERIENCE IT HAPPENS. I HAPPENS ALL THE DAMN TIME.

If I could tell you how many times shitty doctors have told me "go - and sin no more" -- I fucking hate leaving the doctors I trust for new ones. And it is worse that I know the statistics and I also know that the more healthcare I get the more likely I AM to become one. And I FUCKING HATE IT.

Thanks for listening.

I love this!

Ahh! Melissa, my friend. It is great to observe the Sun making its annual return in celebration of the day you entered this Life. May the new year bring more opportunities to shine forth the Light of your heart and the depth of your mind for the many with whom you come into contact.

Each of us shines our Light in myriad ways, none better than another; merely different expressions of the One Light. And the beautiful part of it all is that as we shine in our own way, we express that energy which animates all that was, is, or ever will be for the benefit of All. Therefore, shine your brightest Light and enjoy both your journey as well as your plans. You are Great, know this!! Salut! - Baruti Kmt

A Letter to Doctors Sending Me to Collections

Dear every doctor who is collecting:

Over the last few decades I have accrued hundreds of thousands of dollars in MY SHARE of healthcare fees. I have done EVERYTHING possible to avoid debt because I'm a "responsible" Midwestern gal. I paid off every credit card each month... till I had to start putting HUNDREDS OF DOLLARS each month just for my medications to keep me alive.

I know when you look at your income you won't see that. I know YOU just want to get paid because YOU went to school. Guess what- SO DID I. I'm sorry that this feels like an adversarial relationship. I get bills from you - labs, rad, surgery tech fees ranging from thousands to even $11.19. I have tried over the decades to make payments but when the bills ad into the hundreds of thousands even when I'm INSURED, and I am either during my gravy time employed or worse a student making about $700 a month - a I spend three times that on my medical fees - I cannot POSSIBLY re-pay you in full. I'm sorry we live in this era lacking in healthcare reform.

I know many of you pretend to want it and then go on sermo and bitch. And I'm sorry you think you cannot possibly live without making plenty of money. I cannot possibly live without healthcare. I WANT TO THANK the physicians and healthcare workers who have taken their time and effort to keep me alive.

Over the years some of you have been really kind and offered to let me pay you $5 a week. Some of your office managers have been amazing to work with. Others of you have called me horrific names like lazy or a bum. Some of the collections agents you have employed have said, "I would have made better plans for my life." As if any of us plans for chronic illness. Additionally- I have NEVER been rude or unkind to the agent on the phone or pointed out that I have TEN TIMES the education they probably have and I did it SICK - No - I have always been gracious and attempted to make payment. BECAUSE I AM HONORABLE. I believe people should be paid.

When I have worked with the poor - or even the middle class or blue collar people who don't have the means - sometimes I have ignored payment. Once, an HIV pos guy bounced a check. I ignored it. You know what he did. He decided to move to his parents in Cali and he cashed out his 401K and paid his balance of $1000 to me. I cried. I was so humbled because I would have NEVER ASKED for it. I knew his expenses. And at the time I was able to work 2 jobs and had insurance.

I have done very questionable things to have insurance - like marry assholes in non-romantic bargains - because FUCK THE MAN - AND FUCK BIG MEDICINE AND FUCK HEALTH CARE. I'm basically uninsurable without someone to marry me or IF I can hold a full job TRADITIONAL 9-5 (or in academia all hours job)- which I rarely can anymore without taking entire years off for treatment in between and going on cobra - and writing.

Each time I do this - I hold my breath that I don't lose my healthcare. My insurance has wanted me dead since I was a little girl. And I have seen MANY healthcare providers who glance fleetingly at my bloodwork and are AFRAID of me. AFRAID to touch me. I am HUMBLED by the healthcare workers who will face me. I AM HUMBLED by the doctors who will deal with me and that is why I work so hard to repay the ones who have worked with me the longest.

I have no savings or much retirement left because I have used it to pay for my ongoing healthcare. I want you to know that is how important it is to me. I'm sorry if you feel angry or screwed over. I want you to know that I feel dirty each time I get a collections letter. And I want you to know that you can't POSSIBLY MAKE my credit any worse. I'm sure that is one of the reasons why my ex divorced me. Because he could never dig me out of such an enormous economic medical hole. Even doing bankruptcy NOW wouldn't stop the debts that incur in the future.

I'm not a bad person. And I want you to know I don't think you are either. Only two of your office staff managers ever been rude in all this time and one she made cry and the other was just a cunt and told me I was a bad person. Neither understood there is a difference between illness and bad. I'll chalk it up and mulligan it.

I deserve to live because I WANT TO LIVE and I have worked HARD to stay alive. And I have made important contributions to this world. So when you get really offended -and some of you have called me and directly spoken to me and acted really indignant and some of you have office managers to deal with the dirty work of money - I want you to know - I'm SORRY that I owe all so much money for my healthcare and you probably won't ever get it because I'm currently using what I have to stay alive NOW.

You won't ever see this letter. And I know you just think non-payment is a slacker who took advantage of you. But I will tell you this. Once, when I was working with a chemo patient, her oncologist sent me a check from a different state because she was so moved by the work we were doing and asked to work with me as well. And she did- along with her partner. And you know - I REALLY FUCKING NEED THAT MONEY at the time. So god has infinite mercy. And if you open your heart sometimes you will get the money need. It is how I've been sustaining for ever. And ever. And ever.

Every drop of debt on my credit cards and in collections right now has gone to keep alive. I call that honorable debt. And I just want you to know that if you are feeling bitter right now, the only promise I can make is that I try every day to touch the world and make it better and contribute since financially I am not able.

Sincerely,

Melissa

Why Policing Drugs is Stupid

Today I got into a conversation with some pharmacists about drugs and addiction where I presented an idea that we should decrim and tax drugs. They freaked out saying, "I don't want to pay for that- blah blah blah - the cost to society - what people do with their bodies is fine- but not on mine dime blah blah blah"-- as though the TAX THAT PEOPLE PAID wouldn't cover it. Yes?

Anyway- we tax alcohol. It is an addicted substance. Some people handle it well. Some become quite abusive of it and kill themselves on it. Some drunk drive and kill others. We still keep it legal for everyone who is an adult. Even people who have contraindications can drink and kill themselves - even their livers and kidneys and bodies and blah blah blah - cost to society. blah.

We use "corn sugar" (the artist formerly know known as hfc) in mother fucking everything and kill our bodies with it. That shit is the devil. We knowingly eat all kinds of BAD THINGS. We put horrific things into our bodies, engage in dangerous activities, have unprotected sex, drive without seatbelts, carry guns, you name it- we engage in a wide variety of varying dangerous activities.

Why then are DRUGS such a hot button issue?

I can name a few that are THEORIES (not my own- but I subscribe to them) and some that are my own ideas as well...

Some theories presented are basically the construction of racism and construction of drugs as BAD. Back in the day we had laudanum as an ok thing to keep hysterical women in line but opium was illegal and a death penalty for the "dirty chinese"... seriously- same fucking shit. RACISM. Because we didn't want the Chinese working on the railroad.

Similar thing happened with pot -- Maryjane was ok till Mexicans were seen smoking it -then it was constructed as a "lazy wet back drug"-- and then a beatnick drug-- and it ONLY THEN became criminialized.

Coke has always had a LOWER sentence than CRACK even though it is THE SAME FUCKING DRUG. Brown skin higher sentence. Wealthy people afford coke, poor (broke) folk smoke crack. R-A-C-I-S-M. Construction of drugs as bad. The war on drugs is a construction.

This is a theory. I buy into it. Because how then can various LEVELS of alcohol be legal in beer and wine be higher. Then 2 years later the alcohol level go up and be legal again?

Meanwhile - I said - decrim and tax. The pharmacists went NUTS. Then you'd have to make OTC - BLAH BLAH BLAH- people would get addicted. blah. I said - no. People who will abuse drugs will ALWAYS ABUSE SUBSTANCES. In countries where there is decrim and available drugs - there is NO higher amount of drug use OR abuse or addiction. NONE. The only thing there IS are foreign assholes who come in and vomit on the streets and make them have to clean it up in the morning. VERY ANNOYING.

THEY also have a high amount of ED visits - the foreigners. But the locals - NO higher amount of addiction. Just like making liquor legal doesn't make MORE drunks. People who will be alcoholics will find a way to drink - even if they have to make illegal stills to do it. THEY WILL FIND A WAY.

Anyway- some of my theories is that pharmacists (and doctors) get so many drug seekers they get jaded about pain and real medical uses for opiate medications so they forget that 1) people do have real pain. 2) they forget that even if they sold pain meds AND opiates were decrimed and moved otc as well only the abusers would go there and suddenly they wouldn't have the users knocking at their doors... and 3) if you took acetaminophen (paracetamol) out of the drugs it would have less impact on liver - and get people higher quicker... People know this shit. They have enormous drug comparison sites on how not to OD and how to detox their liver. They are amazingly adept at how to be a good druggie.

Another of MY theories are that we do PILLS PILLS PILLS too often for real pain control - we get many people dependent (not addicted- but dependent) on them and they reach for them far too often. Insurances don't PAY for the many varied modalities to control chronic pain - leaving the best ways to deal with acute pain confused with chronic pain.

Another - we do not TEACH MDO'S (or pharmacists) (or any healthcare providers) much about the science of pain management. There are certain chronic diseases that require much more palliative care and medication management than others. Additionally- multi-dimensional care is the best resource because people who FEEL IN CONTROL of their pain - and know they can have it without suffering feel better than those who do not.

People who have no to few resources cannot afford the types I'm talking about. I once went to a pain clinic to see a "pain counselor" to teach me bio feedback. It is ALL I WANTED TO KNOW. He wasn't expected ME - a woman who has rolled her entire life in pain. I'm highly educated, I don't have the affect of someone in pain, and I am VERY SUCCESSFUL. ALL I FUCKING WANTED was to learn bio feedback.

He started treating me like a seeker- and called me "self-aggrandizing" in my chart. SERIOUSLY. I normally wouldn't review my chart- but my neuro and my neuro-psych and I wanted to know after SIX FUCKING VISITS I had yet to learn a DROP of bio-feedback when THAT IS ALL I WANTED TO LEARN. When he asked my pain I'd tell him I was rolling at an 8-9 but that was ok. He never believed me. But really- on the scale when he'd add it up- yes- it was probably something that would send most people to the ED. I don't take drugs unless I cannot move for more than 3 hours. THAT IS HOW LONG IT TAKES ME SOME MORNINGS TO GET UP OR DOWN MY FUCKING STAIRS. So I wake up earlier. I handle my life. Pain is not my identity and there can be pain without suffering.

In my entire life I have NEVER been high on anything except IV'd fentanyl. And trust me - those were post-op and I was hurting too much to enjoy it. I presume my lack of high is because I have never been out of pain enough to feel the effects of opiates. I've also never been "dependent" because I get off them when I can, take fish oils, and use as many non-pill pain management technics as possible. I form relationships with my docs and my pharm staff so they actually know me, and I avoid the ED like the plague- for both disease avoidance, and to avoid being treated like a seeker or a junkie. My drug list takes up two pages of meds and isn't only in pill form. I don't need judgment.

People HATE chronically ill people. Human beings run away from disease. We instinctively back away from a cough. Imagine what people do when they know you have illnesses. Lucky for me my illnesses are invisible. Unless I OUT MYSELF- which I do - I DO. As an advocate.

Meanwhile - some people who "serve" also seem to out themselves as anything BUT servants.

Really- OTC HIGH TAX drugs. That way the only people going to a pharmacy would be people like me- the ill. The people in need of help using their drugs. The people in desire of a team of helpful, kind service oriented relationships.

Meanwhile - If I walk into your fucking pharmacy with a smile on my face and make friendly with your fucking techs- and they hand me oxy or dilaudid - trust me - I'm not selling them to my fucking pimp. There wouldn't be the need for that anymore- bc there is already a business handling the drugs. Anyway-- I have thousands and thousands of dollars I use to stay alive - and I keep people the pharmaceuticals in business. And I rarely talk about my specific rare genetically jacked illnesses - which are NOT JUST LUPUS - it was just the one I got as a child. I'm annoyed by PET SCANS and illnesses and I'm annoyed by cynicism.

I also recognize that people throughout history have found dozens of ways to kill themselves. If you move the riff raff out of the pharmacies and into coffee houses (or whatever you want)... the pharmacists and doctors won't have anyone else to hate on -- THEN WHAT WILL THEY DO??? Then they'd have to shut the fuck up about the drug seekers and actually have to be mother fucking public servants.

*faint* fucking *gasp*

Yes- I'm annoyed and angry right now. THIS IS DAMN VENT.

I'm tired of being sick. And I'm tired of my drugs being stolen by junkies- because you know what-- THE PHARMACISTS AND DOCTORS DON'T GIVE ME BACK MY DRUGS - NO THEY DON'T. Because of "policies" -- no matter how long the relationship - and police reports. I've had my house robbed of THOUSANDS of dollars and every drug in it (they found it by accident as they were robbing my jewelry box) - AND when I called the pharmacy to get my KEEP ME ALIVE DRUGS- they could replace everything but my pain meds. My docs wouldn't replace my fucking pain meds either. After YEARS of relationship and a police report. So YES- I have been hit by junkies too. I get the drug problem. I have learned to live in pain - but such cynacism and lack of trust HURT ME - THE PATIENT - the one who couldn't fucking walk at the time and was post op and in a wheel chair.

SO YAH-- I have some anger still. I get the various sides. But pretending you are special because you police the drugs - and we have drug police on the outside - doesn't make it real. Drugs are no more or less dangerous than GUNS and we sell that shit to *everyone* with no doctor to Rx it.

Drug addictions are just one more social problem in the layer of social problems. But they were around LONG BEFORE PHARMACISTS. OR The dea or doctors. People will always use addictive substances... but not everyone who uses them will become addicted... and not everyone who uses them is bad. That is a fucking line made up to moralize an issue- it is a CONSTRUCTION.

But at least hear the different sides of the story. Drugs are not that big of a fucking deal. EVERYONE isn't out to use them. Pharmacists and doctors have to police drugs and the DEA is there BECAUSE they need to ensure their own job. If there were not "war on drugs" the DEA would become moot. And if there were OTC drugs - the pharmacists would have to sit around counting pills and calling insurance with their techs- but no one would get robbed for them... And I wouldn't be refused my pain meds after my house was robbed... and if i was - at the very least I COULD access them if I wanted.

And you know what-- my CANCER FRIENDS kicked in a few each of THEIR PILLS that month and I took fewer doses till I was ok without pain meds. And I have taken very few opiates since them. But I will NEVER FORGET what kind of bullshit system we have created with our "attitudes of police" and the "war on drugs" and the bullshit system we have in place. And how we criminalize REAL PATIENTS who need drugs when they REALLY have been stolen... my entire house was trashed- and they filled all my other Rx's - but oddly- NOT THE PAIN MEDS.

Also- I always hoped to god they snorted the lomotil. The whole bottle at once. (even though I know druggies aren't that stupid)

Changing the Culture of Medicine

This is from an e-mail exchange with a friend who is in nursing: We are discussing the culture of medicine. He asked me: "How do YOU think the culture of medicine needs to change?"

This is my response:

"OK - I'm just one person, and I come at this from many layers - mostly as a patient - but culturally in the US - we need to have more patient advocates, more RN and healthcare staff advocates (re-overstaffing/benefits), more socio-economic equality for healthcare and not cater to the tools and corporate interests and not have MD's who are shills for Big Pharma on one end and woo and voodoo throwing out crazy style unfounded alt (though some is cool) health with out medical evidence on the other.

We need to change the culture of medicine so that SICK HEALTH CARE WORKERS are not expected to go to the hospital sick and get their patients sick. Especially bad if you have immunosuppressed patients. They also don't follow rules like putting on their coats or washing their hands - getting their patients sick. We need to stop treating janitors badly and underpaid/under employed and contracted out so that our rates of infection (like MRSA and C.DIFF raise all the damn time). We need to stop catering to patients who scream for antibiotics when they are not called for thus again - raising incidences of abx resistant superbugs. And we need to have more doctors willing to work collaboratively.

Many doctors have been taught to fear each other's opinion and distrust it. They have also been taught that it is not ok to say I don't know. They have been taught that making a mistake is career ending and we have too many litigious people using law as a way to harm medicine as opposed to gain compensation for real damage. HOWEVER -that is often the only recourse BECAUSE doctors will not call each other out when they are CLEARLY engaging in dangerous practices-- because there is not a good way to PEER control each other. Doctors live in a great amount of fear from all sides.

Too often GOOD docs get thrown under the bus by litigious patients and shitty awful docs continue to practice ad nauseam while other good docs around them run around putting out the fires that they cause - and saving the patients.

People are either over or under diagnosed - often based on their primary care doctor. Especially women in this country- have LONGTERM CHRONIC ILLNESS whilst mean tend to get off lightly and die quickly of things like MI's - yet we don't put our money into researching things for "women's hysteria diseases" - instead we make Pharma dollars to shut them up OR we ignore them and let them to on the rolls of disability. Things like autoimmunities and rheumatological illnesses are just as life altering as cancer - but get very little funding in the states because 9/10 are women. I'm not saying this as a feminist - just pointing out that it is a WOMAN'S PROBLEM. This further disenfranchises a huge number of women and women with children leading to more economic distress - and to doctor/patient resentment and mis-trust of each other. Doctors generally hate their chronically ill patients - especially their medicaid and disabled ones - especially ones who have low- SES and low-education and who are not going to become empowered via other channels.

In many circumstances, in this country, "getting on disability" is the best thing to happen to people because they will have actual healtcare and money coming in. And getting a job will actually LOWER their financial income and make their healthcare dependent on a job. This is problematic if they cannot sustain more than a part-time employment. The AIDS-taskforce finds that many people - once their HIV has been stabilized can work even full time, however their drugs are so expensive they cannot get off the rolls of disability because their pre-existing condition clauses in most work and employment situations leads them to avoid taking the chance of losing their disability. In addition, the wait to get back ON disability once they leave, is at MINIMUM 6 months, meaning their HIV drugs will have to be paid for out of pocket or not be paid at all.

This is true of chemo patients and all other patients who are capable of working (some part time and some full time) but are dependent on disability to pay for their expensive HEALT CARE but would LIKE to work. It is an abysmal and ridiculous system. If we had healthcare available these people could easily work and if necessary cut back to part time. This is especially true of educated people who have a place in the working world, but rely on healthcare for lifesaving medications. It is a known problem among researchers for some time and yet we allow MILLIONS of people to stay on the rolls of disability because we don't create healthcare solutions for them EVEN WHEN THEY WISH TO WORK. There is no way to have partial disability or helathcare and try to work. It is all or nothing.

Additionally, manytimes alternative and complementary medicines are not trusted when they in fact have medical evidence that they work. Things like acupuncture and reiki have been shown to reduce pain -especially post-op pain and lowback pain. They reduce requests for opiate medications yet sometimes insurance pays and other times it does not. There is little to no standardization with healthcare. Pain management- one of the leading problems in this country- stemming not just from post op issues- but also cancers and "back pain" etc -- cause people to seek help. Yet there are dozens of ways to treat pain. However, the easiest and quickest - BUT NOT MOST EFFECTIVE WAY is to quickly and easily Rx a pain med. When things like bio-feedback, physical therapy, and massage, and even small doses of pain meds (especially for auto-immunities and cancers etc) are effective. yet insurance RARELY pays for integrative methods. And people want quick and easy. And docs don't like to invest in learning more or they don't have time or they are exhausted or insurance simply won't pay and the patients claim not to have the MONEY for other things and so THEY TOO write the Rx. (or they refuse and REAL pain patients suffer with no treatment- it cuts both ways). And so the culture of medicine never gets changed.

The food in hospitals is some of the worst - AND further - why the hell do we have DONUT SHOPS and cookies and vending and soda machines in hospitals when we CLEARLY KNOW what that does to health? Should they be a bastion of GOOD HEALTH AND FOOD CHOICES??? The answer is always "People's choice." But if hungry upset worried people HAVE NO CHOICES they will fail to make good ones. If you have a small cafe open offering good low cost options - people will often buy fruit and veggies and yogurts and HEALTHY FOODS.

I could go on - but you see -I am telling you that they go to work in a broken system - with lack of decent funding and insurance - in a system designed to PROFIT on people and individuals can do very little to make it better. Each person can try- but each person is at odds with each other, specialists, insurance, bosses, bureaucracy and their own family needs.

So - the entire system and culture must have changes. I study it from the outside looking in - understanding many voices and seeing all sides. And being open to all voices. I am not here to dictate the changes -just make recommendations.