Mon, Aug. 10th, 2009, 08:39 pm
Talk About HealthCare Frustrations
This is why I am nervous about health care reform. Yes, I know we desperately need it. But we have to make sure we do reforms the correct way, or you end up in my personal hell.
I have the DC equivalent of Medicaid, it's healthcare for low-income people. They have a tendency to pay doctors very late (sometimes never) and at reduced cost. This means that very few doctors accept it. Of the ones who do, they are either very dedicated to helping the poor and sick, or they are terrible doctors who will accept any health insurance just to bring in more patients (because people who have a choice are going elsewhere). Limited selection of doctors means you don't have much choice in the matter as to which one you see.
I don't do well in doctor visits. Being a patient makes me feel terrible, because I associate it with being sick and I detest being ill. Just waiting to be seen gives me anxiety. Add that with a lackluster doctor and you have a recipe for disaster.
Apparently, the nice person I saw before at the rheumatology clinic was a 'student-doctor' with a teacher and not my actual doctor. They were very understanding and communicative. Today was my follow up, where I met my real doctor. My labs came out clean, except for slightly low vitamin D. The doctor instantly decided my pain was from depression, even though I insisted that, even if I was depressed, it would be because I'm in pain all the time and not the other way around. She immediately started grilling me on leading questions, such as "is there a family history of depression" or "have you ever been depressed?"
Stupid me, to answer truthfully. Yes, I have been depressed before. That is how I know I am not depressed now. I'm frustrated with the medical system because half the time they aren't running the right tests or asking the correct questions. I keep wondering if this is vascular or related to my thyroid. Why vascular? I have a known heart problem, a history of arrythmia/unstable angina and MVP, and the pain in my feet started with what seemed to be poor circulation (feet get really cold and then start to cramp, causing pain). There is also a family history of thyroid problems, not to mention the lump in the right side of my throat which my regular doctor thought was 'probably just a cyst'. Hey, did you know having a nodule on your thyroid or parathyroid can cause joint, muscle, or bone pain? Why can't I get anyone to look closer or run an ultrasound of my thyroid?
My pain is not depression-based. It's not all-over blah and achy. It is very specifically pain in certain parts of my joints. It started with the feet/toe joints and ankles, including a feeling of 'being shocked' in my feet after exercise. Then pain in the finger joints (but not the wrists) as if I had arthritis. Then pain in the tendon region of my elbows and in my left knee. For some reason, Co-Q-10 combined with Flaxseed Oil helps quite a bit to prevent this pain. Advil/ibuprofen works best to alleviate the breakthrough pain (although it makes my stomach hurt if I take too much).
But she was already on the track of, "Aha, it's depression", which is enough to make anyone depressed, because this doctor who is supposed to be helping me isn't even listening to me. So now I have a referral to be evaluated by mental health.
Want to know what it says is the reason for being referred?
"Patient admits to periods of frustration."
Gee, I've spent a year sick and with prolonged joint pain and you can't even give me a proper diagnosis, everyone just assumes I must be depressed and that is causing the pain. No, I started out IN PAIN and I can't do the things I enjoy (like dancing or having sex) because THEY HURT and MY DOCTOR ISN'T LISTENING TO ME. So if I AM depressed (and I don't feel depressed, I feel rightly pissed-off), maybe that is why.
If we do get government healthcare, we need a law that says all doctors are required to accept it. Just because I don't have alot of money or good health insurance, why do I have to have compromised healthcare?
Tue, Aug. 11th, 2009 02:27 am (UTC)
lather2002: mmm ...
Believe it or not I do not have insurance. I did for a while through a program with the State of Maryland (Blue Cross/Blue Shield) because I could not get insurance due to a 'pre-condition". It cost me, I forgot exactly, but around $560.00 per month. Well I was late in paying one month and yeah, they cancelled me. Have not got around to reapplying due to, well, business has not been grand. ANyway, yeah, some sort of Health Care Bill should be passed. But I personally do not think the current system has to be discarded and replaced by a government health care system nor does it have to be in reality. I feel that as long as a few changes are made to the current system/laws, including but maybe not limited to,
1) Expanding the current Federal Medicaid Program to anyone, for whatever reason, who can not afford private sector insurance.
2) Making it illegal to refuse insuring anyone due to a medical precondition.
3) Putting a Cap on insurance premiums, put them on a sliding scale that would reflect person's income and employment.
4) Having Insurance (medicare, medicaid or private) pay 100% of all medical costs, no co-pay burdens.
5) Not to restrict or deny any treatment or medical care whatsoever if it is deemed appropriate and/or necessary by a person's selected Physician (Health Care Provider) regardless of the disease and/or the age of the person.
6) Seriously root out fraud and misuse of government money in tax payer government run health care (ie:Medicare and Medicaid).
7) Serious and Actual Tort Reform.
There may be other things I have over looked or are not aware of that should be considered. To pay for the above suggestions, well, add a surcharge tax to all Registered Democrats with incomes of over 5 million a year (to be adjusted every 2 years for cost of living increases). Hell, those that make over 5 million a year can afford to pay additional taxes to cover same. *Pelosi and her husband
, who are worth over 80 million and other Democrats of same may become upset, but hey, tough Titty. They never check the boxes on their IRS Tax Forms where one can pay more tax if they feel they do not pay enough and of course use they also every tax loop hole currently to avoid paying more than probably someone earning much less than they to begin with.
Anyway, just saying ... ';)
*http://www.cbsnews.com/stories/2009/08/06/politics/politico/main5218560.shtmlEdited at 2009-08-11 02:42 am (UTC)
Tue, Aug. 11th, 2009 03:01 pm (UTC)
ext_202375: very frustrating ;-)
I hate it when doctors won't listen. That's why I usually go the alternative route (i.e. things like acupuncturists) instead. Seems like they have more answers. costs more. but it's so fun.
Sorry you don't have too many choices in docs (b/c of insurance, etc).
I got so frustrated with one doctor years ago (OB) while I was trying to get pregnant. He never would acknowledge (even though blood tests backed it up) that *I knew when I was ovulating (and it WASn'T day 14). Anyway.. it was extremely annoying - and I found another doctor. [that's my first time, but not last, leaving a doctor b/c he/she wouldn't listen to me]
Saw another gal one time (normal MD again). Went in for fatigue and help straightening out my diet. She took one look at what I ate and said I was anemic (was kind of rude about it too). Well, the blood tests showed that I wasn't anemic (surprise. I donate blood pretty regularly - at least I did at the time.) anyway - didn't go back there ever again.
And I've enjoyed making the rounds over the years to different kinds of doctors (mainstream western med. and all sorts of others, as well).
My kid had severe food allergies a few years ago - we totally made the rounds (first a round with the 'western' docs. they recommended starving my child. I didn't like that). And then we found a therapy (not in the western stream) that felt right, and was reasonably effective. Now my son can eat.
So yeah - we've been around. Chiropractors, acupuncture, and a few other sorts of therapies as well.
Tue, Aug. 11th, 2009 05:19 pm (UTC)
jadxia: Today's Update (The Next Day)
So the rheumatologist was wrong about the mental health evaluation being covered by my 'insurance'. DC Alliance does not cover any mental health, period. Which is what I told her (another thing she didn't believe, apparently).
I was told I'd have to come up with $280 to be evaluated, not including the possibility of medication (which also would not be covered). The appointment lady thought call the doctor back and tell her.
"Two hundred and eighty dollars is not a walk in the park," she said. "You have the right to a second opinion." She also suggested that I switch to straight Medicaid, if possible, which would cover mental health.
I called my insurance to check my options. He told me I did not need a second referral to see another rheumatologist, however, there is only ONE other rheumatologist in DC who takes my insurance. I would need to call my benefits rep (at my clinic) to see about switching to Medicaid.
I then made an appointment with my primary care provider, just to keep her in the loop and ask her opinion on what I should do next. Then I called my benefits rep and learned that the only way I qualify for Medicaid is to be declared disabled (for a year or more) by my primary care provider, which is not going to happen, especially since the supplements I am taking make me somewhat better. Funny how being proactive about my healthcare has done me a disservice. I don't feel well enough to work full-time yet, but if I work part-time I lose ALL my insurance (even as crappy as it is, it is still better than none). We should have a Medicaid category for partially disabled people.
My clinic has a sliding scale program for people who have no insurance. It covers mental health at the clinic. The front desk staff told me I wasn't covered by this program because I had insurance -- of course, the insurance doesn't pay for mental health i.e. I'm screwed. My benefits rep says they are wrong, I DO qualify for a mental health evaluation on the sliding scale (meaning I'd pay fifteen bucks). She said that ruling only applied if my insurance covered partial mental health, but since it didn't cover any at all, that is the same as having no insurance according to the the program. She said if I had any problems to tell them she SAID I was approved and send them her direction. She's a very nice lady.
So here's my gameplan:
There was a cancellation tomorrow I managed to snag with my primary care provider (a minor miracle). So I will see her tomorrow and discuss the lump in my throat and whether or not thyroid/parathyroid problems might be an issue. Then I will see the front desk staff and 'make' them schedule me a mental health evaluation at the sliding-scale price.
I am positive that depression is not causing my symptoms. If I am depressed (and I don't feel depressed), it might be making my symptoms worse, but even then it is not the cause. The only way I am going to convince the doctor that I am not having joint pain because of depression is to have some 'expert' tell them, because they are obviously not listening to me. Once I have a stupid piece of paper to show any doctors that I'm not having depression-based pain, maybe they will start HELPING me get better.
I am absolutely going back to the acupuncturist, even though I feel like the one acupuncture treatment made me worse. My view is, I now know it has SOME direct effect on my joints. So far, all the drugs the doctors have given me (with the exception of OTC Advil) have had NO effect on the joint pain whatsoever. Of course, they keep giving me things for stress like amitriptyline, so no wonder the meds don't work. Maybe if my acupuncturist adjusts my therapy, we can make it have a positive benefit. And I don't care if that means I start spouting ridiculous principles of yin/yang, chi, or meridians. I am willing to adopt any amount of mumbo-jumbo if the end result means I feal better.
As I've said before, if I thought standing on my head every morning and singing "Kum-by-yah" would make me feel better, you bet I'd do it faithfully.
Sun, Aug. 16th, 2009 04:23 am (UTC)
I am a believer in general solutions, and NOT a believer in solutions that work for individual people or cases. However, this problem (health care) is so complex that I cannot offer any wisdom. At the risk of being boring, I do have some advice for you. If you are one of those who believe “The only thing to do with good advice is to pass it on. It is never of any use to oneself.” (O.Wilde), then just pass it on or ignore it.
You write that you do not do well in doctor visits. Unfortunately, you seem to have an undiagnosed ailment and you seek to get better. So you MUST do well in doctor visits. You are stuck with one or two health-care-plan-assigned rheumatologists, and your rheumatologist did not listen to you when you spoke. It is absolutely frustrating. But if you are stuck with her, you MUST make her listen to you. And being mad or frustrated will not get her to listen to you.
My first advice is to educate yourself to better communicate with doctors. Believe it or not, doctors are under intense pressure at work like many other people, and may frequently take “the path of least resistance”. I heard/read good things about “The Intelligent Patient's Guide to the Doctor-Patient Relationship: Learning How to Talk So Your Doctor Will Listen” by Barbara M. Korsch, but I have not read it myself. This book or some others in the same vein may help you being heard.
My second advice, and you may have already done this, is to keep a log about your health and share relevant parts with your doctor. Clearly, your condition is not easy to diagnose. Otherwise, it would have been diagnosed by now. By keeping a detailed log of what worsens or improves your condition, you might help a willing doctor with the detailed detective work that seems to be necessary in your case.
This is all very boring, but I believe that conventional medicine still offers the best chances to achieve your goal, although there might be a long a difficult path to get there. And I am sure that the reward, regaining your health, is worth it.
BTW, anybody who reads your blog would absolutely be convinced that you are not clinically depressed. Maybe you should have your doctor read it, after deleting appropriate parts, like this entry!
Sun, Aug. 16th, 2009 05:21 am (UTC)
jadxia: More information
My regular doctor thinks it is fibromyalgia, and so far I fit all the signs. Unfortunately, I'm not sure I really believe in it. That doesn't mean I don't believe ppl have pain, symptoms, etc, I just happen to think that drs use fibro as a catch-all term for "we don't know what is wrong" and that it is really several ailments lumped together. I've also discovered that fibromyalgia, when triggered by a virus, and "post-viral syndrome" are identical except for one important difference. If you get better, they call it post-viral syndrome. You don't get better from fibro. I wish more studies were being done to discover this crucial difference.
As there is no real treatment for fibro beyond pain management, etc, my dr says alternatives may be the best way to go. And since most drs, especially those that see us poor 'deadbeats' are coerced into not prescribing painmeds in the horror they might support some addict, it is doubtful I will ever receive any. (My dr is really a PA and doesn't prescribe them, and we all know what the rheumatologist thinks.) Thank the gods I can still get relieve from ibuprofen, we are monitoring my kidneys etc.
Sun, Aug. 16th, 2009 05:26 am (UTC)
(Anonymous): Re: More information, part II
Currently, fibro patients do get certain meds which are usually for depression. This is not because a good dr thinks it is depression-based, but because some of these meds work on neuro-pain pathways. This is why many depression meds are also headache and seizure meds.
I'm on the waiting list to get evaluated by the mental health ppl at my clinic to a) prove to the rheumatologist I'm not imagining things, and b) to get on these meds (which my PA/dr also doesn't prescribe). Another wait.