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When nothing works.

September 19, 2013

In my life I have known people who struggled with tremendous mental health problems, including myself.  I have known three people who ultimately took their own lives.  I can’t even begin to describe how painful it is to see someone suffering so much and be unable to help.  According to the National Institutes of Health, suicide is the tenth most common cause of death in the United States.  I find this statistic surprising and alarming.

There is significant controversy around suicide, even in the case of people who are terminally ill.  The Judeo-Christian religions generally consider suicide an offense against God and the sanctity of life.  Indeed, as a medical professional I have sometimes encountered quite sanctimonious reactions to patients who have attempted suicide, not just amongst the public, but some of my own colleagues.  What is often missing from the argument is compassion for the real pain and suffering of the individuals involved.  This is not a criminal act, nor a sin against God.  This is an attempt to stop the pain which has become intolerable.

In most cases this suffering can be alleviated.  In terminally ill patients, aggressive pain symptom management can make a big difference.  In people suffering from depression or other mental illness, there are medication and psychotherapeutic treatments that can be quite effective for some.  Social support from friends and family helps.  There are still people, however, who are not helped.  This may be because of a lack of resources to obtain medical treatment.  Psychiatric services for those with low income or lacking insurance are generally stretched quite thin and sometimes of poor quality.  Some people have access to care but refuse it.  Self-isolation is common in those who are very depressed.

A special case is the Department of Veterans’ Affairs (VA), which bears the responsibility for treating the medical and psychiatric problems of many of our country’s veterans, devotes scant resources to psychiatric care.  They advertise their anti-suicide efforts widely, but when a veteran seeks out services, those received are often of poor quality and just forget about getting psychotherapy.  My husband struggled with trying to get help from the VA for serious psychiatric problems off and on for 20 years.  It wasn’t until he had private insurance and was treated at a private psychiatric hospital that he even was put on the right type of medication for his condition.  The only psychotherapy offered was a 6 week anger management course.  Then they act surprised when studies some out showing continued increase in suicide amongst veterans.  According to the Center for Public Integrity, nearly one in five suicides nationally is a veteran, adding up to 49,000 between 2005 and 2011.  You mean the squeezy balls with the suicide hotline number distributed at the VA clinic didn’t help?

Unfortunately, some people suffering from depression never get better.  Sometimes even the best of care can’t take away the pain.  Of the friends I have lost, two had access to good care and made sincere efforts to take advantage of it.  One withdrew from everyone and refused care, even though he had successfully overcome depression and alcoholism in the past.  All three slipped away and I don’t think there was anything anyone could have done to stop it.  I couldn’t have stopped it.  All I can do is pray that they are now at peace,that the suffering has finally been relieved.

If you have arrived at this page because you are contemplating suicide, please know that there are probably many more people than you know who care about you.  You can go to SuicideHotlines.net to find the numbers for national and local hotlines where you can talk to crisis counselors right now.  And even though I have been knocking the VA’s efforts to help veterans with psychiatric problems, do try the VA’s crisis line.  They can at least help in this moment and they understand what soldiers have been through.  Whoever you are, there are people who understand your pain.

Amusing cat pictures to lighten up your day.

September 3, 2013

I have found that some good animal pictures do a lot to cheer me up and lessen the impact of my symptoms (or if I’m in the hospital, gasp!).  Here is a collection of my cat Miss Bebe in every kind of box and hidey hole you could think of.100_0001

Here’s Miss Bebe in a flat rate box. If it fits, it ships!
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Miss Bebe meditating. She’s in her happy place.

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Miss Bebe in the Pretty Princess game box. She knows she’s pretty and she’s not afraid to say so.

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Miss Bebe resting in the knitting bag. The yarn is soooo soft!

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Caught out by the catnip. She has the innocent eyes, don’t you think?

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Is she thirsty? It can’t be comfortable in there.

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Don’t ask me how she got in there!

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With her brother Mr. Bebe. It’s been a very tiring day.

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Allie deserves some time in the limelight. Here she is in a beautiful field of wildflowers.

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Miss Bebe can always find a pillow.

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Mr. Bebe just wants to be a part of the action.

Awaiting the next magic cure.

August 28, 2013

Who among us has not wished to be suddenly freed from bothersome (or life-threatening) symptoms?  It is natural for people to want to feel good.  But what if there is not much that can be done to change your situation?  What if today is likely to be as good as it gets?  That’s not the case for all of us coping with chronic conditions, but it is for many.  Even those of us who can still improve our situation through medications or lifestyle changes want something to happen to make it easier.

For the last year and a half, I have known that viscosupplementation for my moderate to severe knee arthritis could make a significant difference in my pain and day to day functioning.  Viscosupplementation is the practice of injecting hyaluronic acid preparations into the knee joint to lubricate and possibly relieve inflammation of osteoarthritis.  Common brand names include Synvisc, Orthovisc, Hyalgan, etc.  Back when I had insurance and money, these injections had helped me quite a bit by reducing my knee pain, allowing me to walk more without precipitating a flare.  Last year when I started going to the poor people’s clinic for care I requested referral to ortho in anticipation of inevitable flares of my arthritis.  It took 5 months to convince them to refer me and another 10 months to get an orthopedic clinic appointment.  In the mean time, my usual winter flare was worse than ever before and by January this year I had started using a cane whenever I went out and a knee brace on my worse knee.  I have used a cane before and it didn’t bother me, but this time it started looking like a permanent addition to my wardrobe.  That was a tough pill to swallow and contributed to increasing depression during the winter months.  When I injured my left knee ten years ago (hit by a car while crossing the street – I don’t recommend it!), I knew it would never be the same and that I would develop early arthritis.  I knew I’d need a knee replacement by the time I was in my 50’s.  I had long since accepted that fate.  But knowing there was treatment I was not getting because of the scarcity of resources to treat the low income uninsured made it much worse.  I clung to my hope for getting this treatment through the months of waiting for my appointment.  Finally I was able to get the injections for both my knees at the beginning of August.  Now, almost a month later, I’ve had to accept that while the treatment has helped, I have to keep using my cane and my brace.  Despite having extensive medical knowledge and a fairly realistic expectation of the outcome of treatment, I still was holding on to the hope for magic.  To find the magic doesn’t exist is disappointing, but I suppose not unexpected.

I’ve seen friends have similar experiences with other treatments such as surgery, medical devices, new medications.  It’s hard to watch, knowing there will come the inevitable flare to destroy dreams of a symptom free future.  I think these dreams are one of the ways we maintain hope and cope with the reality of permanent, chronic health problems.

Understanding the Affordable Care Act and the new insurance marketplaces.

July 25, 2013

There has been much said about the Affordable Care Act (or Obamacare), probably as much false as true.  Misconceptions are rampant, in no small part because of the misinformation spread by political opponents of the Obama administration.  In order to cut through the fog and find out what the ACA actually means to you, you can find a wealth of information on the federal government’s site, HealthCare.gov.  This site is also available in Spanish and resources are provided for speakers of many other languages such as Creole, Tagalog, Chinese, Polish, etc.  Press the “Start Now” button on the screen and answer a few questions and you will be taken to a screen that explains how to access the Marketplace in your state or the federal marketplace if you live in a state which has opted out from creating their own marketplace (such as my home state, Texas).  This screen will also feature questions and answers tailored to your demographic information.  You can even sign up to get email updates about the insurance marketplace here.

A link to a short animated video about ACA was posted on a health care related forum I read which I found to be a nice succinct explanation, though not detailed.  Regardless, it’s pretty cute and very easy to understand.

This video was written and produced by the Kaiser Family Foundation and narrated by Charlie Gibson, July 17, 2013.

Marilyn Tavenner, an administrator at Medicare and Medicaid Services, published a blog on the Health and Human Services (HHS) website this month entitled Myth vs. Fact: Health Insurance Marketplace on Track.  This article discusses details of the opening of the federal insurance marketplace and policy around it.

Misconceptions still abound as to the scope and effects of the Affordable Care Act.  I met a woman a few months ago who is Medicare age.  She was a full time RV’er and had been for several years.  She told me she had decided she needed to sell her RV and get a job because of Obamacare.  I did not pursue the conversation farther, but I’m assuming she believed care under Medicare was going to change drastically.  This type of misconception is widespread.  I have received dire warnings from some friends of a more conservative bent regarding my Medicare benifits set to start next year.  In reality, some services are going to be covered that were not covered before or at a higher rate, costing Medicare patients less.  The drug benefit, Medicare part D has already changed for the better, giving patients discounts on brand name drugs once they have reached the “donut hole”, thus reducing their costs.  The law also provides for closing the donut hole by 2021. For an explanation of the donut hole see my article, The mystery of the donut hole.

Many people fear they will not be able to afford insurance required by the “individual mandate.”  There will be government subsidies available to help lower income people with premiums.  See this page for income cutoffs for help with premiums.  In addition, insurance companies will not be able to deny coverage to people with pre-existing conditions or charge them higher rates.  Women will no longer be charged higher rates than men.  There may be some premium adjustments that occur because of these requirements, however one should keep in mind that employer provided coverage at big companies has been offered regardless of pre-existing conditions  for years.  My rates at some of the large corporations I worked for (such as HCA) was quite affordable.

The Medicaid expansion will raise the income allowed for people to obtain coverage to 133% of the federal poverty level for people under 65.  Of course if you live in a state that has opted out of the Medicaid expansion (such as Texas) this does not apply.  For more information on the Medicaid expansion, see the information provided on the  Medicaid.gov  eligibility page.

Overall, we should see more people getting better health care under the provisions of the ACA.  It’s not a perfect solution to the problems in our health care system, but it does something to help the millions of people who are unable to obtain needed care today.  Personally, I think it would be far cheaper and more efficient to offer Medicare coverage to everyone who wants it, but that’s not happening anytime soon.

Chest pain is what the patient says it is.

July 18, 2013

The subject of chest pain can be difficult in a medical setting.  Since chest pain of cardiac origin may indicate a life threatening situation, all chest pain is approached with a single minded determination to rule out cardiac first.  This is a great thing.  It helps us catch evolving cardiac events and minimize permanent damage.  The problem is that often this is where the diagnostic process stops.  If a patient is not having a life threatening cardiac event, they are sent home with a pat on the head and maybe a referral to a GI doctor.  There are lots of reasons your chest may hurt, some serious, some not.  We do people a grave disservice when we do not ensure that a doctor will work with them to find out just what the problem is.

One thing I’ve observed repeatedly is people sent home with no answers as to why they felt pain severe enough to bring them to an emergency room or a doctor’s office.  Sometimes people are even treated as though they cried “wolf” or at least made to feel that way.  This is quite unfair, as hospitals and doctors exist to determine what the health problem is.  The general public does not have the tools or the knowledge to safely distinguish between severe chest pain caused by a heart attack, aortic dissection, or pulmonary embolism and pain caused by less urgent issues such as heartburn, costochondritis, or fear.  Even doctors in hospitals with all kinds of sophisticated tests cannot always make an accurate diagnosis.  Why would we expect the lay public to do so?  Yet there are doctors that treat people quite poorly once they’ve determined there is no sexy, life threatening diagnosis to be had here.  Most doctors don’t behave this way, but there are enough that it causes real problems.  I’ve talked to many, many people (most of them women, which points to another ugly problem) who have encountered rude, uncaring doctors in emergency rooms.  They have been treated poorly enough that they make statements such as, “The only way I’m going to another emergency room is if I’m dying.”  The unfortunate part of this is it might be a self-fulfilling prophesy.  We can’t afford to alienate the public and cause them not to trust the health care system that is supposed to take care of them.

Another problem is when there is not an acute cardiac event such as a heart attack going on, but the patient is still experiencing pain of cardiac origin.  This happens often, and too many times the patient is sent home without a conversation with a cardiologist about how to treat it.  I know my former cardiologist would run from the building as soon as he knew I was not having “reversible ischemia”.  He didn’t care much for treating the non-reversible kind I guess.  The last hospitalization before I chose to move on to a different cardiologist, he refused to see me in the hospital after my stress test, though he had promised to do so.  He made no suggestions for medication adjustments and sent the hospitalist to my room to say, “It’s not your heart!” while I was suffering severe delayed chest pain from the exertion of the stress test.  I was sent home in more pain than when I arrived, which I had to treat the best I could with the meds at hand when I got home.

This brings us to a big issue.  Cardiac chest pain is not always an emergency, yet patients are given little advice on how to handle non-emergency angina pain.  We have to figure it out for ourselves for the most part.  Sure, most people get a bottle of nitroglycerin, but the standard advice is take it 3 times 5 minutes apart and if that has not gotten rid of the chest pain, call EMS.  That’s fine advice for many people, but is it really appropriate for those of us with chronic angina?  I learned about prophylactic use of nitroglycerin before exercise from other heart patients, not from my doctor.  I learned about common angina triggers from other patients, literature in the cardiologist’s office, and the internet.  While my doctor was still telling me pain triggered by anything besides exercise was probably not cardiac, I was reading about and discussing with many chronic angina patients triggers such as strong emotion, heavy meals, and fatigue.  If I ever tried to call the cardiologist’s office to ask a question about chest pain, I was directed to the emergency room.  Sure they can’t tell over the phone whether I am having another heart attack, but there has to be some kind of middle ground.  I knew my usual chest pain and I could make some determinations about how far beyond the pale a particular episode was.  My experience with going to the emergency room is it leads to yet another “chest pain, rule out MI” hospitalization and I get no help with adjusting my current meds.  The parting words from the hospitalist from the hospitalization I mentioned earlier were, “It hurts and there’s nothing we can do about it.”  Turned out not to be true when I sought help from another cardiologist.  This is why we are so hesitant to go to the hospital for help when we need it.

I have a friend who is recovering from her second open heart surgery in a year.  She does not have coronary artery disease (lesions within the large arteries of the heart).  Rather she had unroofing of a myocardial bridge which is surgery to uncover a coronary artery that travels through cardiac muscle tissue instead of sitting on top of it like it is supposed to.  This poor artery has been squeezed with every heart beat all her life.  This causes damage to the inside of the artery called endothelial dysfunction which makes the artery constrict inappropriately, cutting off blood supply to the part of her heart supplied by that artery.  This causes chest pain as her heart’s demand for oxygen surpasses the ability of this narrowed artery to supply it.  Imagine putting out a fire with a garden hose.  If it’s a little fire, that works fine.  But if you have a big fire, that little stream of water can’t keep up and the fire spreads.  You need a big fire hose, but that garden hose isn’t able to expand to be the fire hose it needs to be.  For those of us with endothelial dysfunction, we often exceed the ability of our compromised artery to supply blood and oxygen.  This causes cardiac pain, as this tissue is exquisitely sensitive to oxygen deprivation.  The ischemia (lack of blood circulation) often is not enough to trigger a change in the electrical activity of the heart so the EKG may appear normal.  My friend described being scoffed at by staff at her cardiac rehab when she explained she was reducing her activity because of chest pain.  A technician actually had the nerve to tell her she was not feeling pain, she was “having discomfort” and went on to say it was not caused by ischemia.  This person went on to accuse my friend of over-thinking her exercise, implying that she was sabotaging her own rehab.  This treatment is unacceptable.  I’m hoping my friend reported this to the supervisor or charge nurse.  The purpose of cardiac rehab is to teach people to listen to their body and safely stretch their ability to exercise.  It sounds to me like the technician needs further training.  Not everyone who goes to cardiac rehab has coronary artery disease, thus the treatment must be individualized to match the patient’s condition and diagnoses.

This brings me to the title of this piece:  chest pain is what the patient says it is.  If you hurt and it is in your chest, I think you know that you are hurting.  I think after all these years we all know where our chests are.  When I say my chest hurts, that is what I mean.  I am not diagnosing the pain.  I may have a good idea of the cause because I have lived with my aches and pains for a long time.  If I say I am experiencing pain, that is what it is.  Please have the respect to acknowledge that.

Considering patient’s rights and subsidized health care.

June 22, 2013

Since I became disabled, stopped working, lost my insurance, had to sign up for the Medical Assistance Program in my county and started going to clinics serving the “poor and underserved” population, I have experienced an infuriating loss of control over the care I receive and the providers I can see.  For one thing, the quality of the practitioners serving the underserved is sometimes somewhat less than the quality of practitioners in private practice.  I recently found out that in Texas, a foreign doctor seeking licensure to practice medicine is required to practice full time for three years before becoming eligible for a full license.

From the Texas Medical Board website:

Mandatory Service Requirement

Effective 9/1/12, physician licensure applicants who are not citizens, permanent residents or conditional permanent residents of the United States will be required to practice full time, for three years, in a medically underserved area (MUA), a Health Professional Shortage Area (HPSA) in Texas, or at a Texas institution that maintains a graduate medical education program. This is authorized by Section §155.0045 of the Medical Practice Act, Texas Occupation Code.

I am not saying that foreign trained doctors are not as good as doctors trained in the US.  Like in anything else, we all have good doctors and bad doctors, no matter where we are from.  What does strike me is that you have a captive population of doctors who may be working in an area or type of practice they don’t like and aren’t good at until they are free to do what they really want (like make more money in a private practice).  As far as I can tell, Texas is the only state with this particular requirement.  I don’t know the background behind this policy change and actually believe some good could come from requiring some degree of public service from all doctors, but I do have concerns about receiving care from a continually rotating staff of inexperienced doctors who likely don’t want to be there.

I don’t know if that is the problem in the clinic system I’ve been going to.  I do observe that the doctors tend to be young and foreign and seem not to understand the system within which they are working very well.  They seem frustrated and harried.  Really though, I think most of the problems are administrative in nature as well as there being a culture of paternalism.  For example, a patient who is covered by Travis County’s Medical Assistance Program (MAP) is assigned a primary care physician.  They are not given any choice, the physician is assigned.  The first physician to whom I was assigned turned out to be a very disorganized, rude woman who did not listen to what I said, frequently interrupting me to dispute the medical history I reported and question the medical judgement of my previous (far more experienced) doctors.  She took no comprehensive history even though mine is quite complex.  She ignored my questions.  When my husband saw this same doctor, she completely ignored his reports of unbearable back pain and handed him a voucher for an eye exam.  To change doctors, I had to make several phone calls and demand to speak to a clinic supervisor.  The second doctor is better, but still not one I would choose to entrust with my health.  At this point I have given up on seeing a good doctor or getting any kind of comprehensive care under this system.  In the words of my cardiologist, “It (MAP) is better than nothing, but not much.”

The culture in the MAP program seems to include an inherent distrust of patients.  My husband and I were never asked to complete the usual ream of paperwork detailing our medical history, medications, and review of systems.  Instead the clinic prefers to rely only on written records received from other doctor’s offices.  These records are never reviewed with the patient to confirm accuracy or even that they are actually the correct patient’s records.  The doctor never asked me for details of my history.  All she got was what I volunteered and that was limited by what I was able to squeeze into the conversation.  This led to misunderstandings such as her belief that the primary reason I requested assistance applying for the local paratransit service (pick up and drop off instead of riding the regular bus) was arthritis instead of angina pectoris.  This resulted in denial of my application because what she wrote on her page contradicted what I had written on the 3 preceding pages of the form. (Don’t even ask why she didn’t look at the other pages before filling out her part and signing her name.)

Another way in which this distrust is expressed is a requirement I was presented with at a visit with a counselor the other day.  I have been attempting to establish care with a psychiatrist in this clinic system because my private psychiatrist is retiring soon.  I was told this week that I would have to provide a letter from my psychiatrist stating that I was no longer under her care before I could even obtain an appointment with a psychiatrist.  When I said that I would not terminate care with my current doctor without first interviewing and consenting to be cared for by the clinic doctor, I was told I would not be given an appointment.  The explanation involved the standard of care requiring only receiving prescriptions from one doctor at a time.  That part is accurate, however what they are demanding I do is go for a period with no doctor and take my chances on the competence and fit of this unnamed clinic doctor at a clinic where I already know competence is not a big priority.  Of course the easy thing to do is to ask my current doctor to write the note, see their doctor, and if their doctor is unacceptable fire them and rehire my current doctor.  But why should a patient be required to do this in order to get care?  I am perfectly willing to sign an agreement that I will only have psych medications prescribed by one doctor at a time, however I am not willing to fire the doctor I have been with for 11 years in order to get an appointment with someone else sight unseen.
Patients’ rights is a concept that is loosely applied in the world of MAP/CommUnityCare.  Let me share a definition of this concept from MedLinePlus:

As a patient, you have certain rights. Some are guaranteed by federal law, such as the right to get a copy of your medical records, and the right to keep them private. Many states have additional laws protecting patients, and healthcare facilities often have a patient bill of rights.

An important patient right is informed consent. This means that if you need a treatment, your health care provider should give you the information you need to make a decision.

The key here is the right to the information needed to make an informed decision.  I cannot make an informed decision to drop my current doctor without knowing who is there to replace her.

So while discussing my objections to the fire your doctor policy with the counselor, he made the observation that feeling one does not have choices makes things much more stressful.  He then stated that I do have choices.  It turned out he was referring to another organization called Lone Star Circle of Care which also takes MAP.  I had been thinking of looking into care with them but was afraid of losing access to my medications in a switch over.  My mind was made up to finally seek an appointment.  Ok, here’s the icing on the cake:  when I called Lone Star to request an appointment, I was informed that MAP requires me to change my primary care physician assignment to them before I can get an appointment.  Then the nice young lady told me that other patients have had significant difficulty doing this and that it can take “a while.”  How’s that for a how do you do?  To leave a clinic with poor care for one that is possibly better, I have to burn the bridge with one before I can even see what the other is like. Pretty much like the situation with the psychiatrist.
Recently on a discussion forum for “preppers” (people preparing for the imminent collapse of society), I saw a discussion of signs that the SHTF (shit hitting the fan) is happening really soon.  (yes, I entertain idle fantasies of what would happen if civilization ended tomorrow) One of the signs mentioned was people accepting poor health care as a matter of course.  It sure feels like we’re there.  Guess I’d better fill the water tank and stock up on non-perishables before SHTF.

So it’s been a while…

June 8, 2013

I have been feeling fatigued lately and every time I considered writing, it just seemed like too much work.  Even now, the second sentence seems like an uphill battle.  I guess I just have to power through.  Sometimes that is what is required in writing as well as life.

A few months ago my therapist, a man who has enjoyed robust health for most of his 67 years, said he didn’t know if he could keep going in the face of the challenges I face.  To me these challenges are simply my life and to fail to meet them would be tantamount to suicide.  I think all of us who have some kind of chronic health condition face the same kinds of decisions.  A big issue for me is how hard do I push.  If I overexert myself, I might pay the price for days afterward.  Yet I do not want to spend every day mainly resting on the couch.  When you have a chronic problem that really is unlikely to get much better, you can’t keep putting things off.  I may not feel great, but I still wash the dishes because I don’t want to have twice as many to deal with tomorrow.  I walk the dog because she needs to go outside.  I may go for shorter walks when I am tired, but I still need to do at least that for her sake.

One of the big challenges is keeping my spirits up in the face of disappointments.  It’s important to keep finding new activities and interests to keep me engaged in life.  I have to make the effort to stay in touch with friends so I don’t become more isolated.  I keep my mind active with things like reading and research, seeing movies I haven’t seen before, trying new hobbies.  I acknowledge my feelings of fear, anger, inadequacy but try not to get mired down in them.  I look for ways to be hopeful.

One thing that helps me a lot is talking with friends who also have chronic conditions.  These people understand the daily ups and downs and have likely faced many of the same difficulties.  This social support is my lifeline.  I also stay in touch with my psychiatrist.  She is someone who can look at my behavior objectively and suggest medication changes or other interventions if I seem to be slipping into depression.  For some reason I very much want to deny that I am depressed.  I’ll admit to depressed feelings at times, but do not want to own the possibility that there is depression present much of the time.  But lately it has become harder to explain my reluctance to write even when I have excellent ideas for articles.  I have to acknowledge that I push myself to answer emails from friends, even though I love talking to them.  It just feels like a lot of work.  

That’s what depression is like sometimes.  Just feeling like it takes a lot of effort to participate in normal activities, like it’s just too much to think about.  Needing to rest my mind more and more.  I have found in my lifetime that it is just as important for me to push myself as it is for me to rest.  Keeping this balance is the way I have kept going all these years.  Also looking for ways to maintain hope for the future.  That is probably the most important thing.

Hope.