Posts Tagged ‘doctors ignoring patients’

InvisDisability

My current medical symptoms would send the average person to the ER…crushing chest pain, blurred vision, difficult breathing, unrelenting migraine headaches, inability to eat normally, tachycardia or bradycardia, high or low blood pressures, insomnia – oh, and the back pain I can’t find any specialist to address because I have already had 6 surgeries, and now, the shoulder that already has been repaired twice is painfully shredding its way out of its socket…I really haven’t had a “good day” in about 12 years. But I don’t LOOK like I’m sick so people think I am a malingerer, just looking for attention, or faking my symptoms.

I guarantee I haven’t developed the magical ability to manipulate my blood tests, MRIs and various other medical tests so they come back abnormal.

I have had a difficult time learning to accept my medical issues. I have many symptoms in many systems that cannot be classified into any particular category. I have most recently been dumped into the category Ehlers-Danlos Syndrome (but not any particular type, of course) as this seems to at least catch-all the symptoms I display in some way. All of my official diagnoses have the letters “NOS” after them – “not otherwise specified.”

It really stings when people are just plain callous about my health issues – and it is the worst when these people are the doctors that are supposed to help me. I have had to had to do a lot of my own research within professional resources (Medscape, PubMed, etc.) and advocate strongly for myself. This has meant seeing many doctors in an attempt to find one willing to take on my complex issues and try to piece together the puzzle that I am. I have been treated quite harshly by many health professionals due to my complexity. I understand that they may to want to take on a patient they cannot easily figure out. It would just be nice if they could not be so abrasive in their dismissal of my symptoms and test results.

Because of the unpredictable nature of my symptoms, I have lost what few social connections I had. I spend much of my time alone, at home. I used to find solace in online forums, but I have found many of these are similar to real-life support groups that tend towards a circular discussion of hardships – and never achieve any growth or change. What would be helpful is a directed, online resource or app that provides guidance and education in the management of chronic illnesses and the psychological challenges people like me experience. Can such a thing become a reality?

I have always had to be a survivor – my Type A personality and perfectionist tendencies helped me through the cPTSD (complex PTSD) from 14 years of sexual abuse, rapes, and general cruelty from classmates. I found ways to cope – all on my own. I never really had much of a support system. Now, to be sidelined from so many activities that used to define “me,” was – and IS – quite distorting to my thoughts and feelings about life in general.

Anxiety has replaced what used to be stoic resolve.

Anger and resentment that I was formerly able to tap into as energy to push through rough situations – to make myself physically stronger in the gym, or mentally tougher in the workplace – now comes to the surface in staccato bursts, and those closest to me (my husband, primarily) suffer the consequences.

It took me about 6 yrs to be able to say the words “I can’t.” This is NOT pessimism. It is pure, unadulterated realism. And with the myriad of undiagnosable conditions I live with, I HAVE TO be realistic. To think any other way is deleterious.

I know this goes against the “rainbows, unicorns and fluffy bunnies” mentality that most self-help resources (and professionals) seem to think is THE ONLY WAY is the way to overcome hard times. But, with the help of a therapist that specializes in treating people with multiple medical issues, and, a good PCP that is a realist, I learned that I HAVE TO say the words, “I can’t.” It’s really a no-brainer – but 99% of people just don’t have the comprehension of how their body actually works to really understand. Simply, it protects me – and others – from injury. An example of this would be not getting behind the wheel of my car when I am having certain symptoms.

Don’t misunderstand me, it doesn’t ever feel comfortable to say “I can’t” – and many people don’t “get” this way of thinking at all, nor do they even bother trying. This leaves me feeling isolated and rejected by society. I might as well be some alien life form. And, if I had a dime for every time I have ben offered advice about supplements, yoga, qi gong, tai chi, Reiki, acupuncture and whatever new “complimentary therapy that Dr. Oz has been touting of late, I’d be one a rich gal.

People need to learn that not all disabilities are visible ones. Not all of us that have difficulty getting about are in wheelchairs. And, not everyone with life-altering conditions look or acts “sick.”

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The sun going down on me. Photo by Lori Schneider.

The sun going down on me… Photo by Lori Schneider.

 

 

 

 

 

 

 

 

 

 

 

 

 

The myriad of health issues I have are now battling for center stage with my failing relationship with my only real-life friend, my husband. OR it is most definitely contributing directly to it.

[But that is another topic in and of itself  – one that doesn’t belong in this blog. It just would be REALLY great of my husband, and alleged best friend would understand these things, and want to work on our relationship. But his lackluster responses to my pleas for us to work on this don’t give me much hope, nor reason to be. At times he acts as if nothing is wrong – yet I know deep down that he knows what our relationship has become, aided by my mysterious health issues and consistent issues finding medical care, is not much more than coexistence. BUT – what do you do when your partner in life doesn’t make the effort to try to improve your relationship? Ouch.]

These health issues stole my career paths and any options I had within my fields of expertise. I tried for years to do something from home – to use my  skills and experience to help others – for free.. But, no one wanted my help  – this devalued what I had made of myself, who I was, what I had accomplished, and what I thought I could do that would be meaningful.

Every day, I never know what symptom or issues will pay me a visit and hang out to make me question the validity of my existence.

Ahhh, and how these things – I mean things that used to annoy me, or cause me psychic discomfort – have changed me. I have lost myself. My raison d’être, my sunshine, is disappearing. The sun is going down – on my life.

For 40 years, things that got in my way were motivating to me. They made me fight, they made me strong,

Now, these things paralyze me.

Literally.

I often will just plop down on the floor where ever I am when these feelings hit me, and just stare at a fixed point.  (It is a grounding technique – in more than one way. Ha Ha.)

No longer can I throw myself into a project, a creative endeavor, a research topic. I find that these distraction techniques/coping mechanisms just increase my physical symptoms. And of course, these involuntary reactions just increase my doubts about my ability to survive this predicament.

What I need now is the me from 5 years ago – before I lost my self to this hell. But alas, she is gone. Yup – thrown in the thrash, compacted and burned. A deep “thanks” to all of you – you know who your are – all of you so-called patient advocacy groups that made promises that I could write for your website/journal, all of those false friends that hurled criticisms at me, and all of you “health care providers” that violated that basics of that all important Hippocratic Oath by failing to treat me as a human being – you all helped do this to me.

One person can only fight for so long – alone – before all these things take their toll.

“He who has a why can hear with almost any how.”
so goes the famous Nietzsche quote.

I have lost my WHY.

And that makes it hard to find that HOW.

Made by me on someecards.com

Made by me on someecards.com

I recently posted that received a course of TMS (transcranial magnetic stimulation) to knock back a major depressive episode.

However, I failed to mention that I experienced several other changes in symptoms  – symptoms other than the “F5 tornado.”

There HAS to be a connection between whatever the TMS does and the symptoms from which I experienced relief…which leads me to believe that the doctors are missing a serious connection between all my weird symptoms that make me the zebra I am.

So, what changed during treatment?

1.  Much fewer migraines….

2.  My odd and unexplained breast regrowth ceased – along with the pain that went along with the growth. (I had a reduction Nov 2013 due to the major and PAINFUL increase in size of my breasts from a 34DDD to a 34I in 4 yrs). My reduction was “supposed” to bring me to a 34C. HA. I quickly (and PAINFULLY) grew from that alleged size to a 34DDD in 4 months post-reduction. NOTE: all hormonal and endocrine levels always test “normal” – even though any bachelor’s level bio student knows endocrine levels can change on a moment-to-moment basis, the doctors that order these tests seem to stand firm that everything is “normal. Yeah…right. As the Ghostbusters always said – “we are ready to believe you.” NOT.

3. An increase in dreams. Some good – some bad – but all were vivid and memorable.

4. Longer periods of deep and restful sleep (I wear 2 “life trackers” that monitor sleep because of my weird sleep history (See my prior post on DSPS  – delayed sleep phase disorder).

5. A marked increase in sensitivity to medications: Clonidine (a BP medication), and MSIR (morphine sulfate immediate-release).I had to completely STOP the Clonidine as the effects that it caused during the TMS were debilitating – I literally would be unable to wake-up for 14+ hours if I took even half the smallest dose.) I take the MSIR for chronic back and leg pain I have had for 16+ years  – and the 6 surgeries I have had have failed to completely resolve the pain. During the TMS sessions, I required a lower dose of the MSIR to get pain relief, and, for the first time, I experienced side effects (a bit of nausea and extreme sleepiness) from my usual dose and had to reduce it by half.

6.  I had far less incidents of low blood pressure (associated with my Autonomic System Disorder – I have many posts and links to others’ posts about this condition on my blog.

What has happened with these symptoms since I ceased treatment one month ago?

1.  I am once again being awakened by migraines – with nausea, photophobia and positional increase in pain. I am getting 2-3 migraines per week.

2. My breasts are sore, lumpy and swollen. Gads, I hope they are not growing again. I just bought new bras because I though the growth had ceased.)

3. I am still dreaming, but less frequently. And they “loop” – much like they did before the TMS.

4. Problems getting to sleep AND staying asleep. (And, I cannot take any sleep aids due to the side effects I have from any meds used to sleep since this odd Autonomic Disorder I have kicked in back in 2012.

5. I have had to increase my MSIR dose back to pre-TMS Levels. I seem to have more pain in my back as well.

6. My BP and heart rate are becoming much more labile (variable) again. I have had to take additional beta-blockers recently to address the increase heart rate and chest pain.

Sooo….what is the connection? So far, none of my doctors have tried to solve this mystery. Why not?  A simple Google search can provide clues….

Which is what I did. It didn’t take long at all. I am an experienced researcher with decades of research experience so I know how to word my searches to get the best results. I am sure that diagnostic research was covered at some point in medical school.

What did I find out?  All of these things are connected in some way to DOPAMINE levels, and are things that are effected by what is known as the HPA (Hypothalamic-Pituitary-Adrenal) Axis. (Check out the link for hundreds of images from sources that could provide clues to my doctors….note the 3 words I used for the search…real rough, huh?)

HELLO? Can someone PLEASE tell me why a single medical professional cannot take this information and try to help me?  Doesn’t anyone care about me and the quality of my life???

To keep up-to-date on the subject in the medical field in which I have an interest, personal or professional, I subscribe to Medscape updates. I strongly encourage every ePatient or person that advocates for themselves or another should do the same, IMHO. It’s free and very worthwhile.

A shocking topic came through today and I HAVE to share it with everyone I possibly can.

Anyone that has been dismissed, treated in a less than human manner or completely ignored by a doctor they are looking to for help may second-guess their initial feeling: “Why does that doc hate me so much?”

You discuss it with your spouse, your friends, your fellow “zebras.”

Most tell you, no, doctors don’t hate their patients-s/he must have been having a bad day…or..YOU are reading too much into the interaction.

Read the Medscape article  HERE:

It is titled, “Medscape Business of Medicine Top Complaints Posted on Doc-Rating Websites,” by Shelly Reese.

Then, please read the response from a doctor to the article, a Dr. Barbara Lawrence, copied this directly from the plethora of comments, about 25% of them similar in tone (OMG – these are the people we are trusting with  our LIVES…) below:

“This reminds me of a large, complex doctor evaluation done by the Feds on Medicare patients. After evaluating multiple categories it turned out what seniors valued most highly in selecting a doctor/practice was the number of parking spaces and the waiting room appearance.

I don’t mind patients being sensitive to my bedside manner, my staff’s courtesy or follow-up phone calls. But really , I’m not in the business of customer service because I’m a medical professional. I can’t guarantee that patients will be seen on time due to the unpredictability of what comes through the door.

I could care less if the patient thinks they were correctly diagnosed or treated because we aren’t peers in internal medicine. Just because Readers Digest says being tired is a sign of lupus doesn’t mean you have it.

Patients may want to be co-partners in their care but they suffer from the extreme disadvantages of being poorly informed/misinformed, anxiety-driven, making judgments based on anecdotal information or TV ads, and no long term clinical practice experience.

That’s not to say their ideas have never been right. Sometimes they are spot on. But most often they come in with fixed foolish ideas planted by Connie Chung or, God help us, the internet.

Such “customer service” surveys should confine themselves to the patients’ area of expertise, and not the esoteric and complex art/science of medicine. experience.

That’s not to say their ideas have never been right. Sometimes they are spot on. But most often they come in with fixed foolish ideas planted by Connie Chung or, God help us, the internet.

Such “customer service” surveys should confine themselves to the patients’ area of expertise, and not the esoteric and complex art/science of medicine.”

(Emphasis added)

So, how dies THAT make you feel??

Vindicated – you are not crazy, overreacting, etc….?

Mad as hell?

Disgusted?

Do you feel sad for her patients?

Do you wonder how many of them were misdiagnosed, ignored, or treated harshly by her in some way?

I REALLY would love to hear your reactions!

My opinion:

A doctor-patient relationship should be one of mutual respect. If a doctor wants the respect and admiration of patients, treat them likewise. And for all concerned, they should stay abreast of the latest medical advances and studies in their specialty.

I wrote a lengthy reply to her nastiness , but I won’t include it here unless my readers ask. (I did say this in support of all us zebras: “It will confirm what all of us hard-to-diagnose patients have experienced- that docs with hatred towards us DO exist.

How sad.”

(Gee, I wonder how Connie Chung feels about being called out in this? Yikes.)

Great assignment for today  – list 5 most difficult parts of your health focus, and another top 5 list for the little, good things (small victories) that keep you going.

So much has happened in my life the past month – this is a fun one for me:

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THE DIFFICULTIES:

1.  Finding a Pain Management Clinic that has doctors that are up to date on the best new treatments for chronic pain issued (RARELY do I find a pain management doctor that knows more about the latest and greatest than I do – because I suffer from chronic pain, I have a personal investment in my research. I get sick to my stomach when I go to see a new doctor, and I start to talk to him about the surgery I had in 2011, and s/he has NEVER even heard of the procedure – which has been around over 20 YEARS. SCARY. Do I want this person treating me with archaic knowledge. No.

2. Being reliant on medications that I must rely upon to get through the day, every day. Even though the percentages of people in developed countries in the world on daily meds are quite high (over 50%), it seems that people like to pretend they live in ivory towers and are better than everyone else and look down upon people that take medications – no matter what they are.These people tend to be in control of the lives of others: bosses, managers, etc. That makes it hard for people like me to get back to work – when we need accommodations to get to doc appts, or we need to adjust our hours due to our conditions. The ADA is there, but it is really not as helpful as it is made out to be. That will be the subject of another post. Just because we take a medication or we have a health issue does not make us less valuable as an employee or person.

3. Getting people to read my blog. During this challenge – I expected a huge response from my 150+ Facebook and Linked-In and Twitter friends. I have heard from THREE. Yup, 3. What do I have to do to get people to read my stuff and wake people up to the reality of poor health care by our PCPs, and even our experts? An article in the latest issue of Newsweek (April 23-30, 2012 issue) could have been written by ME – it opened with the story of a 38-yr old man whose PCP ignored his constant complaints of symptoms. The man researched his own condition on the internet and learned he had kidney cancer. He was dead 3 months later. (I will be writing a review of this article in a later blog.) How can I get this message out – things MUST change! Billboards? Planes with banners? The Goodyear Blimp?

4. Finding friends that are tolerant of my tenuous scheduling issues. Due to my multiple conditions, I do not know from one day to the next how I will feel, if I will be able to drive, if I will even be able to focus properly. Usually I can come around in 2-4 hours after I wake up – but that required people with flexibility. I have ONE friend right now that “gets” me and is still my friend. The rest, sad to say, have all drifted away, and some have posted snide comments on my FB pages about my issues “What now?” “Gross.” Some just don’t post anymore -even family. They are on FB  – I see them on chat – I see them comment on other’s posts – but all of mine are ignored. It hurts. And then, my doc gets after me for not being socially involved. Gee – how can I be when no one has the patience – or cares enough – to be my friend.

5. Not being a “productive member of society” when I used to work 60 hours/week, go to the gym 5 days/week, personal-train a few folks on the side every week (I was a personal trainer in weightlifting for many years) and have a social life on top of that. Now, A good day for me is getting up, emptying the dishwasher OR taking out the garbage OR doing laundry. I feel very useless. I feel like an “in-valid” on Gattaca.

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THE THINGS THAT KEEP ME GOING (that keep me from giving up):

1. My husband, Kurt, and his belief that I do have value, even in my current state.

2. Sharing my life with my parrots, watching with awe as they communicate with me and Kurt, as their personalities develop, knowing they will be with me for the rest of my life. I am so thankful to the Universe, to Spirit, to God, for giving me the opportunity to share my life with such amazingly intricate and specialized sentient beings.

3. Finding my new counselor, energy psychologist Fern Ross Israel, who has helped me more in the short time I have been seeing her, than ALL of the counselors I have seen since I was 16 yrs old. IT was serindipitous how I found her – so I knew she was the right person for me to see. The Universe has truly gifted you, Fern.

4. Ben & Jerry’s Limited Edition flavor available at Target ONLY – Brownie Chew Gooder. Hands-down, the most PERFECT ice cream flavor ever to come in one carton. Even when I don’t feel well  – it is the only thing that I can eat.  God Bless you, Ben & Jerry!

5. Polymer Clay. This versatile medium has enabled me to express myself in a variety of ways. Too bad the psycho-mommies of the world think that everything was created for their kids – and they forced the companies to change the formula. This WAS a serious art material, not a kids toy. There were kid’s clays already. Now, I have to spend 5x what I would have had to spend 3 years ago to get a quality art product. Bitter am I at these mommies – yes. But, I have stockpiled enough product via free Amazon certificates I earn through the completion surveys online. And this makes me blissful.

“A doctor must work 18 hrs a day and 7 days a week. If you cannot console yourself to this, then get out of the profession.” Martin H. Fischer ( 11/11/1879-1/19/62 German-born American physician and author.

The Dr. Fischer quote loudly echoes my belief, that doctors should be fully engaged in their profession-theirs is NOT a 9-5 job. Yet, most treat patients as if the sparse amount if time spent with each patient ( an average of of 10-16 minutes, if we are lucky to see an “average” physician) was their total investment in that patient until their next appointment, and no further inquiry is made into the complaint voiced by their patients.

And, how do I know this, or even think this is true?
I have had doctors, specialists even, tell me that they “don’t have the time to research (my) complaints, especially since they are so unique.” Why, then, are they doctors? It really disgusts me that my doctors may actually NOT care about their patients – that they became doctors because their Mumsy insisted upon it, or because, no matter how they practiced, they would eventually end up driving a Mercedes.

I was told on more than one occasion to go to one of the large, teaching hospitals in Boston to get the best care, especially with my complex issues. Well. I DID GO. To three if them. And do you think that I was ever the topic of conversation in any of the meetings that these speciality departments have in the large teaching hospitals here in Boston. NOPE. I know because I asked. All three. Perhaps, if I had been the topic of a case review, someone there would have had the cognizance to do a Google search and find clues to what may be going on with me ( like I have done).

So to all of your physicians out there, if you don’t believe in the truth of Dr. Fischer’s quote – get the HELL out of the field and stop wasting the time and money of your patients.

Yeah, yeah, I know all about the insurance companies and their unreasonable demands that don’t let doctors spend lots of time with patients, but, as Dr. Fischer points out, it is not a 9-5 job folks. Google a symptom. You just may discover the cause of someone’s suffering and be able to address the cause, and improve their quality of life.

And, isn’t that what you got into the healing profession??
If not – take Dr. Fischer’s advice, and GET OUT!!!
For the sake of your patients. Please.

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