“I’m getting impatient”: an empowered patient guest post

Social media brings unexpected connections, which lets us combine thoughts and forces. This summer we connected with “Rheumatoid Arthritis Warrior” Kelly Young (see her great post here, Learning to use my mother-of-a-patient voice), which led to being found by Cynthia Lott Vogel, through Kelly’s blog.

Like “mama lion” Diane Engleman last May, Cynthia had long carried thoughts about her story, which found context and community in the patient empowerment movement. Her story is long, deep, often painful, and thoughtful.

She opens with a powerful view of the patient side of participatory medicine. -Dave

Guest post by Cynthia Lott Vogel
(All rights reserved)

Part of the definition of an empowered patient, I believe, should be: “Knowing, through education, experience and self-knowledge, what advice one should follow and what ‘wisdom’ one should disregard and then doing what you believe to be true—but being willing to be corrected should experience prove otherwise.” And this has become my guiding star as I’ve navigated the waters of illness and medicine.

All of this is what I’ve learned the hard way through experience.

I read incessantly and have sought the latest knowledge in science which I can see is now beginning to turn a corner and to let the light of some “older” ideas beam into its rigid walls … and it is beginning to acknowledge the helpfulness of some alternative methods of medicine.  Outdated ideas such as, “Once damage has been done to the brain; it is irreversible,” have begun to be overturned and scientists are discovering what I have suspected and been insisting on privately for years: that the brain can indeed “learn new tricks” and can make biologic changes as a result of the way that we think.  These changes can either cause illness or they can heal us of illness and damage.

To illustrate this point, I will tell you a bit of my story:

I’m almost 48 years old.  My health was fairly good up until my 38th year when I got a severe case of mycoplasma pneumonia, which also came accompanied with a serious and lingering diagnosis of asthma. I ended up being hospitalized repeatedly for life-threatening asthma; during which time I dealt with numerous pneumonias, multiple infections, steroid myopathy, IGG and IGA deficiencies, and an infected PICC line which loaned me endocarditis over the span of the following six years; all of which I received at the hands of the treatment or place of treatment.

All of this blended seamlessly into the time when, four years ago, I was diagnosed with psoriatic arthritis (PsA), an inflammatory disease similar to rheumatoid arthritis [RA].  This problem led to: the crippling of my hands, a hip replacement, several other joint surgeries, MRSA as a result of the hip surgery, a subsequent hip dislocation and terrible pain daily in my spine and hands and most other joints – as well as the arrival of the skin disease, psoriasis.

When I was 27, I had my first spinal surgery for a badly herniated disc…In consequent years I ended up having five more spine surgeries…several of them to correct previous medical errors.  All of this later necessitated the insertion of an intrathecal morphine pump to manage the pain which was becoming increasingly intractable as the years passed and when the morphine stopped working, in an effort to free myself of at least this particular medical dependence, I got myself weaned off and then had the pump removed.  That surgery of course, although “routine,” went south also, and there developed a CSF leak which consequently caused a severe case of cerebral/spinal meningitis which almost cost me my life.

My psychiatric issues, which I’d struggled with at their onset in my young adult years, also recurred after a 15 year hiatus and after some years of problems, I am now, finally, on a workable combination of medications having received the diagnosis of Schizoaffective Disorder: a double whammy of schizophrenia and bipolar disorder.  I’ve struggled throughout the history of my mental illness with numerous, sometimes crippling side effects of the medications and also now have serious difficulties in retaining information as well as large gaps in my memory, due to 15 treatments of Bilateral Electroconvulsive Therapy. (ECT)

I am currently on over 23 (???) different medications…and that number has, at times, been much higher.  As a result of this barrage on my system, I have a chronically, sometimes critically, low sodium level for which I was told to restrict fluids and was put on sodium tablets.

If you were to analyze my medical history (which is more extensive than I have indicated here); you would see that I have several genetic illnesses: schizophrenia; PsA; a degenerative spine; as well as asthma.  Everything else was the result of either medical incompetence or REALLY bad luck…but it all stemmed from one of those four issues.  One complication fed upon another; each required different medications which gave various side effects and caused their own complications…and the cycle self-perpetuated.

In all of this time; I’ve learned a thing or two about my body.  I’ve also learned a thing or two about medicine. And I’ve learned, too, how to navigate “the system” of society’s attempts to manage and pay for those with chronic illnesses, both mental and physical…and this includes, for example: the fields of social work, county mental health programs, Medicare and Medicaid, Public Housing, Assisted Living modalities, Social Security Disability Income.

I’ve often joked, calling myself a “patient patient.” Recently however, I’ve gotten impatient.  I’ve gotten impatient with just nodding my head in blind agreement and signing consent form after consent form as doctors suggest one treatment after another for each new problem that arises.  I’ve gotten impatient with the assumption that those who are caring for me have adequate knowledge or skills to treat me without causing even greater problems.  I’ve gotten impatient with the assumption that, once damage is done (especially cognitively), there’s no undoing it.

I’ve gotten impatient when my pulmonologist and GP who has treated me throughout these horrific past ten years said in response to my question about my potential tolerance for exercise: “You can and will be able to do NOTHING. Your lungs will not support any extra demand on them.”  This defies my experience as lately, I’ve begun to ignore him and to exercise…doing progressively more and  more until now, I am not only able to walk across a room without breathlessness but can walk for over 2 miles up and down steep hills, sometimes breaking into a jog, and barely increasing my rate of respiration.  Thus far, I haven’t had an asthma attack in six months which required hospitalization, and believe it or not; that’s some kind of record.

I’ve gotten impatient when told not to drink much water because of my low sodium blood level.  To me, this defies every holistic prescription for health that I’ve ever heard. It defies common sense.  And (when I ignored it and drank the recommended 64 oz of water a day), it also defied my experience…as I watched the swelling in my feet and legs diminish when well-supplied with the liquid they craved in order to flush themselves and to assure them that they would not be parched and therefore do not need to retain any more of that water.  And, throughout my past several blood tests, the sodium levels have been on the low side of NORMAL.

My spinal surgeon has told me that the four discs in my neck which are now badly deteriorated can only be treated by more surgery.  Well, ten years ago, I might have agreed with that.  I might also have listened to his advice not to turn my neck or do anything to further traumatize the area while I wait for him to operate.  However I was forced to wait, and discovered that, yes, sometimes it still hurts, but largely; the severe pain has abated.  Could this possibly be due to the yoga and exercising I have been doing?? (It DOES involve quite a bit of head-turning: both my own head and the heads of others, as my body gets stronger and leaner….but don’t tell HIM that!)

I’ve gotten impatient with the amount of medication that I’ve been told to take and have, through educating myself about what is available in medication; improving my general health; learning alternative means of dealing with pain and learning how to maintain my body’s diminishing flexibility by practicing yoga, eliminated the need for several pain killers and also some of my medications for the PsA as well as my blood pressure medication – just as some examples.

To me, some things, however, are necessary and worth it.  For example: the hip replacement.  Yes, it came with the expected number of hassles and complications…but it has improved my life a hundred-fold.  Would it have been necessary, had I been informed and proactive in my health years ago?  Probably not.  But, by the time I “got a clue,” the damage was done and there is nothing that could repair that…so I did what I had to do to correct the damage and I don’t regret it.

Medical intervention must come when things have deteriorated to a critical state….and you must deal with the complications and side effects of all those treatments as they arise….But, new crises can be prevented if, once the patient (ahem: person) gets to a point of stability where they can begin to regain control of their lives and bodies.  And THEY are often the best judge of just what that body needs and can tolerate; NOT their physician who treats them when they are in crisis.  If the person, who was ill, is able and motivated to do this, they can often prevent the next, potentially lethal crisis and the damaging chain of catastrophic events which may ensue.

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Comments

7 Responses to ““I’m getting impatient”: an empowered patient guest post”

  1. Annie Stith, e-Patient says:

    Hey, Cynthia!

    Wow. I had to take a break after reading before I could write. You’ve certainly been through h*ll and back, but the point is you DID make it back! Comgratulations on that.

    What I really felt a connection to was this:

    I’ve gotten impatient with just nodding my head in blind agreement and signing consent form after consent form as doctors suggest one treatment after another for each new problem that arises.  I’ve gotten impatient with the assumption that those who are caring for me have adequate knowledge or skills to treat me without causing even greater problems.  I’ve gotten impatient with the assumption that, once damage is done (especially cognitively), there’s no undoing it. [emphasis added]

    My previous PCP overprescribed muscle relaxers and morphine, getting me addicted to both. It was only when I had to refill at a different pharmacy thay the pharmacist told me they were well past the recommended quantity. The withdrawals were the most difficult thing I’ve gone through, except not allowing myself any relief from my pain for years because I was afraid of becoming addicted again. This with bad disks and bone spurs in my neck and back, osteoarthritis in my major joints, and Fibromyalgia.

    My old PCP ended up “retiring” because otherwise he’d have lost his license. I’m very fortunate that the PCP I have now is open to “complimentary treatments,” whether it’s vitamins, herbs, or yoga (until I couldn’t do it anymore). To be honest, I think it’s at least in part that he was younger when I started seeing him, and hungry to get his practice up and running.

    I have just recently realized I may lose him due to the limited choices I have in Medigap plans this year. If I do, you can bet your *SS that my first appointment with any new doctor will be an interview, with the questions asked by me.

    Thank you so much for being willing to share your story here.

    Annie

    • Annie,
      Thanks for your comment…and for sharing your story…Yes, unfortunately we often learn that we should become educated about our treatment the hard way as we bear the burden of suffering caused by provider error or ignorance. This has also happened to me, in a similar way as to you, as I became addicted to a sleep medication which I was told I MUST take, even after I’d complained about the negative effects it was having on me and about the fact that I was addicted to it. It ended up destroying about 3 years of my life.

      Now I stand in the difficult position of suffering severe and intractable pain from a badly degenerated spine which is also full of the Psoriatic Arthritis….I’ve been told it is inoperable and that medically nothing can be done for it…the doctors have told me that my only option is to allow a medical drug dependency to occur by taking very high doses of opiates at regular intervals. Everything in me protests this …I know the horror of addiction and dependency and do NOT want to go there. And yet, am finding the pain to be beyond the limits of mine (or anyone elses) ability to endure. This is a question I still am in the process of resolving for myself. My intention is to explore every conceivable alternative method available to me first…and also to look into any types of new treatments that maybe are being developed as well.

      Right now, I have no quality of life whatsoever, due to pain. I’ve had to (as you’ve indicated for yourself) give up Yoga and much of the exercising I was doing. (I’d written this article a bit earlier when I was still able to do these things..) But I am not going to simply nod my head and trot off to the pharmacy, prescription in hand….My pain management doc and I have gone round and round in our debate on this topic….and I am, thus far, not satisfied with the solutions which have been offered to me.

      God bless you as you too seem to be in this same struggle. Thanks for sharing with me your story, as it is something I greatly relate to.
      Cynthia

  2. Annie Stith, e-Patient says:

    Cynthia~

    I know you have most probably heard, but I found the best option for me in my situation were fentanyl (Duragesic) transdermal patches. The reason is that at least the opiate stays at a constant level in the bloodstream, avoiding the up-and-down roller coaster of short-term opiates. That way, the body doesn’t start to crave during the lows of short-term opiates. Still, it is a “controlled addiction,” and I had to wrap my brain around that. (I also have a short-term Rx for break-through pain, but it lasts 3-4 months because I rarely allow myself to use it except to help with sleep.)

    Annie

  3. Young Wife says:

    Thank you for sharing your story! My husband has PsA. We too are learning to try different things to see what works for him. Chiropractic care and acupuncture help him, but it can get expensive. We’ve tried different diets, eliminating dairy, etc. I’ve been surprised at how supportive his doctors have been of alternative treatments. I guess they figure if they can’t fix him, he might as well try other things. :)

    • yes, my doctor had told me that Yoga was probably my only hope to keep me from being bent like a pretzel permanently as a result of the PsA being in my spine…(this is a different doc than the one who told me not to do it)….But when she saw my latest MRI told me it was no longer a good idea for me to do it…My spine is in too bad a shape to continue it safely…
      But yes, there does seem to be an openness to alternative medicine in my doctor (the rheumatologist) as well…unlike some of my other doctors who totally pooh pooh it. They seem eager for me to find pain relief where ever I can because they’ve been so ineffective in that area with me.

  4. Muriel says:

    Hello Cynthia,

    Thank you so much for sharing your experience. I want to add that, thanks to the internet and other people sharing their own experiences of their illness, people are becoming more informed and empowered, and now standing up to doctors. Only, there is a potential hazard in this, as outlined by the Asyha King story, where his parents were stripped of their parental rights for questioning the doctors’ approach to their son’s cancer treatment. Thank God the media got hold of his story and now the young boy is in Prague undergoing cancer treatment. Doctors should be our ally in health, and not the cause of further pain and suffering.

    Warmly,

    Muriel

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