You Never Want to Feel That Kind of Panic When You Have No Insurance

This isn't exactly what I wanted to write about, tonight. I'm not exactly an "on-schedule" blogger, but I know this is definitely not what I was expecting to write about, tonight.

[Before I proceed, though... I just want to say that I don't want ANY pity. No pity... No feeling sorry for me... No hurting for my circumstances. No advice on what I could have done better (I will rip you a new one, if you do, just be forewarned). Life is what it is, and we are all dealt... what we are dealt, sometimes. Whatever that is. There are people, right now, going through a LOT more difficult circumstances. They deserve our support... so don't you worry about me. Also, this post might have a lot of swearing.]

I just need to process, and I need to vent. So to heck with it.

... Where do I start, I don't know. It's such a blur,  now.

Last Sunday.

Last Sunday, running my hands through my hair, while wanting to put it up in a clasp, I found a large, swollen lump or area on the upper right side above the nape of my neck. It wasn't entirely dissimilar to the one on my left side, but distinctly swollen feeling, and sore if one put gentle pressure on it... and irradiating discomfort.

Of course, being The Angry Type 2 Diabetic that I am, I freaked out... said a few choice phrases rhyming with "What the fructose??" and sort of felt the clammy feel of panic rising up my spine. (You never want to feel that kind of panic when you have no insurance.)

I decided, though... that I was going to remain calm. (HA!) Just monitor it for the week, and wait until Thursday (today), for the Free Clinic, to get it checked out. As things sometimes go, I started feeling... unwell.  "Woozy," feverish... just uncomfortable from the growing pressure in that area of my head... The "soreness" was starting to radiate down to my right shoulder, down my neck... And today, well, it was just difficult to focus, at work, and I noticed I couldn't really walk a good distance without feeling... just weird. Light-headed. Nauseated. "It's okay, though," I thought... "Today is the Free Clinic, and they'll have a look at it."

Now, the Free Clinic in my town is basically a rat pack of some medical professionals of various ilks who volunteer to provide some basic/minimal health care to uninsured people, no questions asked, and which only generally meets on Thursday evenings, from 6-8 pm. You have to arrive at 4 pm, though, and make quite the long line. Waiting for care often averages between 4-6 hours... and it's first come first served, of course. They can only see about 15 people.

The problem is... they used to have a somewhat permanent building, which has since been torn down by their tenant -- the next door church, while they make some new additions and changes to their facilities. So, the Free Clinic now has to share space with the next door church, and can only meet whenever the heck the church is not having some event. Which basically means... whenever a magic 8-ball decides.

I walk out there... just praying, praying under my breath that they are meeting. Lo and behold, as Murphy's Law loves me so much... They are not meeting. I think it's because of some stupid Pancake Day crap. I don't know. (Insert your personal sensibilities approved curses here.)

Then you have to make the tough decisions. Is this something that you think will go away; get better on its own? Am I overreacting? Is this... something that... could potentially get worse very quickly, and kill someone? Is this something that can be stopped, but it just needs immediate attention? I don't know... Do I go to the ER (because the local medical clinic is closed... and, even if it was open, they won't see me because I have no insurance and a hefty past medical bill that I can't prioritize to pay right now (don't judge me... you don't know me... and they won't let me pay anything less than an outrageous amount, every month...), while so underemployed and on food stamps...)? Or do I chance it?

Reluctantly, I decide... I'm going to go to the ER. I don't want to be the freak on tomorrow's front cover story that died within days, from something simple, or who knows what. The worst they can do is turn me away. And I was wrong. The worst they can do is shame me, while turning me away.

The doctor didn't even really look, or touch the area much. He basically pushed my hair around, said it looked exactly like the left side of my head, that he didn't see any physical injuries, and then asked have I ever cared to examine the left side of my head...

(Yes, doctor, the rest of us who aren't doctors are certainly idiots... We go entire lifetimes NOT touching our own bodies.)

....and then proceeded to tell me it was probably just me being worried about it, or at the very most a resented lymph node. He dismissed my other symptoms with the wave of a hand, gave me a smirk and a suppressed laugh, and said that I need to just let it stay like that, and come back in a week if it got much worse (with big disbelief all over his face).

I tried, very unsuccessfully to get his attention. He just basically acted like I was bullshitting him, and walked off.

Nurse Patronizer walks in. Nurse Patronizer notices I'm quite angry. I don't recall whatever tipped it off... (pffft!) But... Nurse Patronizer says to me "I don't know what you two discussed," and boy do I let the flood gates go... and I start crying, right there. She begs me to give her 5 minutes and goes off, basically to talk to Full of Himself Doctor, who says "Oh, she needs to just watch the area for 2 or 3 days (yeah, rather than a week, like he had said before... hmmm)..."

Nurse Patronizer repeated over and over again how it wasn't that I had no insurance, while at the same time pushing a flyer on me to go to the Free Clinic tonight.... After I had spent a good chunk of time explaining to them that the Free Clinic was closed. They wouldn't believe me, and kept asking me *why* it was closed. Now how in the &#$@ should *I* know?! All they had was a sign posted about "We will have No Free Clinic Tonight, 03/01/2012." I'm not their schedule keepers!

So, really... hmmm... If you are not punishing me for not having insurance, then perhaps you were punishing me for your perceived notion that I'm using the ER as a PCP provider's office, and not waiting until whenever the heck THEY would have given me an appointment (should I had been able to get one, which I know from experience, that I would have not, because of my outstanding bill. I know how those jerks work, too.)

So, off they sent me... With apparently, a few "lessons" for the road:

• You've lived with your body for 35 years... and are quite educated, Liz, but you don't know your own head;
• You have no insurance, and are underemployed, so you must be subhuman, or some mentally unstable person making stuff up... abusing our services;
• You are nothing more than money;
• I hope you don't die, but good luck. Suck it up, butter cup.

And THAT is the reality uninsured people have to put with... in America. 

I am, at home, and still feel... Odd... Feverish. Sick.

Off and on, it goes. I feel even more special I will get a nice, hefty bill in the mail, for absolutely nothing. For the theater of a man's arrogance, and a woman's patronizing. I've had more pleasant experiences there, before, but not today. 

Not today. 

The Messy Language of Type 2 Diabetes

"Well, my husband is a board certified endocrinologist, and he told me that whenever a Type 2 patient is 'good,' and gets their numbers 'normalized,' that he removes the Type 2 Diabetes diagnosis, and changes it to a 'Metabolic Syndrome' diagnosis, instead, to help them out." -- Misinformed Mrs. Know-It-All.

The woman was very angry at me. How dare I suggest Type 2 Diabetes has no cure. And furthermore, I could go get a gastric bypass surgery, if I wanted. That, for certain, was also a cure. This, of course, was followed by a few "You people will never be like us; you need to stop comparing yourselves to us... You keep trying to act like we are the same, or have it worse than us, or that your disease is just as bad as ours" type of comments. I can't say that I blame her entirely for her misinformed, self righteous attitude. (Okay, I know she was being kind of a bitch. I'm just trying to be nice, here.)

This is the every day bread of Type 2 Diabetes awareness. Raising Type 2 Diabetes awareness is not easy. In fact, it's one of the most painful things I've ever had to do in my life. My husband certainly doesn't understand it, sees a redundant theme in it, and wonders why I don't just get out of it... since it's obvious I can't change the world. I've gone to bed crying, on more than a few nights.

The comment above, is of course, ridiculous. If there is a board certified endocrinologist out there, doing this, he needs to have his license revoked. Simple as that. He is doing NO ONE any favors. He is hurting his patients a lot more than he knows. I understand that insurance companies love judging us -- hey why not, the media has done a great job of misinforming the world, and insurance companies get their news just like the rest of us, and want to use that to safeguard their old, mighty dollar -- but the value of a 'small defense' against an insurance company does NOT outweigh the psychological harm and denial you feed into a person by acting like their diagnosis doesn't exist. Would these people dream of telling someone who had AIDS "If you're good, and your labs come back good, I'll change your diagnosis to HIV positive, instead?" Yeah, I don't think so! (It's not entirely a perfect analogy, but you get the idea...)

But people don't GET the permanence of Type 2 Diabetes. What's worse is that, while we preach day and night that this is an epidemic of epic proportions, our medical establishment does not act like it! (Oh, lots of people are acting like it, don't get me wrong... but it's, mostly, the people who want to scam us, and take advantage of us...) If this is such a serious threat, why isn't the American Medical Association, and the American Association of Clinical Endocrinologists, making it a priority to get doctors educated, and prepared, for diagnosing, and empowering patients? Why are they not working hard to give patients the weapons to fight back, and effectively not feel themselves the hopeless victims of this disease? (I know someone out there will claim that they are... but the proof, or lack of proof, is in the pudding, folks.)

• Patients are out there, going undiagnosed, not because they don't regularly see a doctor (though some, undeniably don't...), but because doctors don't know how to recognize the signs of diabetes, or are UNWILLING to mark down a "diabetes diagnosis" in a patient record, thanks to insurance company scheming. More and more Type 2 Diabetes patients are being diagnosed by other medical professionals, such as gynecologists, urologists, dentists, and eye doctors. Often, a patient even gets misdiagnosed based on ridiculously old knowledge, like assuming that an adult could not be a Type 1 Diabetic, instead, leaving the patient vulnerable to Diabetic Ketoacidosis, and Diabetic Coma.  
• Most doctors, especially Primary Care Physicians (or Family Doctors), get a MINIMAL amount of diabetes education in medical school, and NO extended diabetes education throughout their careers. Diabetes information, care, and knowledge is growing about as fast as technological advances are... why should doctors remain in the dark, if we, as patients, can't afford to do so? Some doctors are going by on 20, and 30 years of OLD diabetes education! As a consequence, when a diabetic patient gets diagnosed, thanks to this lack of knowledge and insurance company scheming, patients get denied access to specialists, denied access to certified diabetes educators, denied access to dietitians, denied access to insulin, etc. Doctors, ROUTINELY, give NO information or direction to a newly diagnosed Type 2 Diabetes patient, leaving them vulnerable to whatever might be out there, on the internet. There is something vastly wrong with an insurance company that denies access to a dietitian, or certified diabetes educator, but is happy to approve gastric bypass surgery. In other scenarios, doctors give patients extreme misinformation, such as "STOP eating ALL fruit because they are high in carbs." Ummm, hello, not all fruit is made the same... We need to learn to MANAGE food, not put the fear of God in people.   
• The medical establishment is allowing itself to be ruled by the treatment guidelines of the American Diabetes Association -- an Association with clear conflicts of interest, per a recent study done by the Mount Sinai School of Medicine, and which has been SLOW AS MOLASSES in embracing the future of diabetes tight control, and management. What's worse, they have GREATLY contributed to diagnoses getting delayed and delayed. This is WRONG and unacceptable. Doctors and Endocrinologists need to be educating the ADA, and not the other way around! 
• Instead, more and more "doctors" and "medical professionals" are taking advantage of the serious need for diabetes patient education, as a door to write books, push supplements, spread their own pseudoscience, and MAKE MONEY. 

Don't get me wrong, here. I am not anti-doctor... and I understand that doctors are humans, too, who can make character and judgement mistakes. There are some AMAZING, well educated, empowered doctors out there, working hard to help empower diabetic patients, and help out in the online diabetic communities... But the overall lack of education, and standards, in general, for our medical professionals is wrecking havoc in our lives, as patients, and it's wrecking havoc in our ability to garner empathy, build awareness, and motivate outsiders to help donate their time and money in the hopes of finding a cure. Who donates to something they think already has a cure? 

Dear doctors, you have MUDDLED the language of Diabetes, and made it a messy affair. Every time you get on TV, write a self serving book, misinform a patient in your office, you MAKE IT HARD for us to live, control, master, and grow, with this disease. How can we, as patients and advocates, have power behind our voices, if you tell lies to people with an M.D. next to your name? Who is going to believe US over you? 

• STOP making up statistics to sell books! No, 50% of Americans don't have diabetes... 33.8% of Americans are obese, but only 8.3% of Americans have diabetes, and that number INCLUDES all types of diabetics, including the undiagnosed. Anyone who claims these things NEVER quotes any real studies, double blinded studies, studies published in any legitimate journal of medicine, of any kind. They make up catchy terms to feed on people's biases, and fears for self serving purposes. Stop getting on Dr. Oz to sell LIES. Broccoli is NOT going to cure anyone's Diabetes. (I'm looking at you, Dr. Hyman.)  
•  STOP telling people gastric bypass will cure their Diabetes. It will most certainly NOT. And what pisses me off the most, is many of you have gotten on TV, and the news, and told everyone that it is, and that it's 100%. Now I can't frigging walk anywhere without some moron asking me why don't I just get bypass, or some other form of that. Well... don't mind if after being called misinformed, and uneducated, by people the likes of Misinformed Mrs. Know-It-All, above... that I get angry when articles like this hit the news, FINALLY admitting the truth... No I am not in crazy denial! It is NOT a frigging cure, or a guarantee of anything! Remission is NOT a cure, it is tight control. And this surgery is a Russian roulette! And, hello, I can improve my OWN care without a surgery, and *I have*, thank you very much. Someone should staple your mouth, instead. :S 
• STOP throwing terms like "reverse", "remission," and "cure" around, in exchange for tight control. Even a Type 1 Diabetic can achieve tight control, and reverse complications, and that does not mean they are cured. Type 2 Diabetes is a progressive illness that requires vigilance, and ongoing monitoring, and with time, those medication free moments will be just a thing of the past, and we will need oral medications, and insulin, to keep healthy, and in tight control... Most full blown Type 2 Diabetics will eventually need insulin, in their lifetime. We may be able to prevent complications, or even slow or 'reverse' the progress of some of them, but there is NO reversing or curing Type 2 Diabetes. Stop bullshitting people. We are big boys, and girls. We can deal with the truth.
• STOP telling people that losing weight will make their diabetes go away! Stop telling patients that they are cured, while they are in your office! These are harmful lies, for all the reasons I mentioned above. Weight loss does NOT remove Type 2 Diabetes. It only helps MANAGE it. Type 2 Diabetes has NO CURE. 
• STOP telling people they can prevent Type 2 Diabetes. NO ONE can prevent anything. This creates feelings of insecurity, self blame, and inadequacy when a person gets diagnosed with diabetes despite having done everything in their power to change their odds. Why not simply talk to people about REDUCING THE RISK of getting Type 2 Diabetes? Isn't that, instead, a little more realistic? Diabetes is NOT a zero-sum game. Everything has risks. Nothing is black and white. 
• STOP equating diabetes with obesity. I GET IT. I am not a moron. I know that there is a very STRONG link with diabetes and obesity. It is a risk factor. Obesity, however, does not mean diabetes.  There is NO SUCH disease as "Diabesity." Obesity is it's own disease with its own complications, and Type 2 Diabetes is an autoimmune and metabolic disease. There is no known cause for Type 2 Diabetes. Why not all obese people develop an autoimmune response that leads them to Type 2 Diabetes? No one knows. And why are not all Type 2 Diabetics overweight? (Sure, some are misdiagnosed, but many are not...) The fact is, no one knows. There is also a very strong link between diabetes and pollution and pesticides, BPAs, drugs (such as statins, beta blockers, antidepressants, antipsychotics, steroids, etc.), other illnesses (like Polycystic Ovarian Syndrome), surgeries, drinking, smoking, etc. Why can't we discuss ALL of those risks? Why can't we be realistic about Type 2 Diabetes? Why can't we speak to people with the entire truth? There has been a 400% increase in antidepressant use by Americans.  Don't you think THAT has had more than a little hand in raising the Type 2 Diabetes incidence? 

And another thing... if it's so easy for you to tell a patient with Polycystic Ovarian Syndrome that it would be helpful in controlling their disease to "eat a balanced diet low in carbohydrates," WHY IS THIS SO FRIGGING HARD TO TELL TO A DIABETIC PATIENT, AS WELL????? (Oh, that's right... it's because pills to treat PCOS don't cost an ARM AND A LEG, and don't make you any kickbacks.) It's not that that is all that is required for better health, but come on, throws us a bone! People are out there avoiding sugar, and all fat, thinking this is what made them diabetic, and thinking what we eat in itself gives us diabetes! It is NOT. 

Doctors, this may not be entirely your mess... But you sure have lathered yourselves with GUSTO with the manure of laziness, and greed. I hold you PERSONALLY accountable for the state of our nation's health when 2050 rolls around. Get some guts, and fight on our behalf.