Posts Tagged ‘research’

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.”

Advertisements
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.)

Day 7

This is another reformatted and edited blog from last years WEGO Challenge – we need some variety, WEGO!!

DISCLAIMER: Sarcasm below. If you don’t like the truth shrouded in sarcasm, please don’t continue. This post is in no way meant to disrespect the medical profession, but is simply intended to draw attention to the paradigm shift in doctor-patient communications in the 21st century, and how patients should adapt to the change.

Headline: Doctors are not Gods – World is shocked.

After todays announcement...this attitude will be changing.

After todays announcement…this attitude will be changing.

Millions were shocked today when headline news agencies around the world announced the results of an 18-month undercover operation by local news investigative reporters: doctors don’t know everything! Recent examination of the plethora of anecdotal accounts now present on the Internet show that many doctors may be treating patients based on what what’s covered in medical school, and what they learn through the research of their colleagues, not on the divine communication with the collective unconsciousness or their ancestors.

The historical, paternalistic manner in which we, as consumers of health care were “taught” to deal with health care professionals is no longer a valid, efficient or recommended manner in which to approach the doctor-patient relationship. There are so many new illnesses, syndromes and disorders being classified and redefined each year. Existing diagnoses are now more thoroughly researched than ever before in history, so there is no possible way that doctors could amass all this information in their brain for easy retrieval when a truly challenging patient walks through the door. This means that a human neurologist could not possibly be an expert on diagnosing all conditions that may fall under the heading of his or her speciality. Therefore, looking to doctors to tell you exactly what do, no questions asked, is no longer the recommended approach to being a mere patient.

As healthcare consumers, we have the right to ask questions and get logical, cogent and informed answers. A good doctor that doesn’t know the answer to a question – one that has realized and accepted his non-deity status and human form – would likely research the question on the professional internet sites created especially for them, and get back to the patient with an answer. Or, if faced with a diagnostic challenge, the professional should refer the patient to a known specialist with research credentials, not just a dude with a schiester-esque website.

Doctors that have not received the “you are human” memo still treat their patients as if they were ignorant children, minimize the importance of the patient’s questions and proceed with a “just do as I say” lecture. Not good. If this happens, please seek out another physician that doesn’t have this attitude.

With clinical research information being widely accessible by all thanks to the Internet, patients are now bringing in research articles to their doctors and asking them for their professional opinions on what they have found. This was an essentially unthinkable act 15 years ago. After all, how DARE you think you know something the all-knowing doctors don’t know! The horror! Many doctors are embracing this – it saves them research time, gives them a jumping off place to start their own inquiries, or even (do I dare say) teaches them something new they may not have heard about!!
My husband often tells me not to bring up the research I find on my weird and rare issues, stating that “I don’t want to anger the doctor.” REALLY? Trying to advocate for the best health care possible is something I shouldn’t do because the doctor may be annoyed? If any of my doctors DID become annoyed, they would no longer be my doctor. It’s just that simple. I wouldn’t want an annoyed doctor to try to hit me with a bolt of lightening, or some other god-like anger response.

So, embrace the finding that doctors are really NOT the Gods they once thought they were, and proceed boldly, asking your doctor questions, researching your conditions, and even bringing in the professional research you’ve found that pertains to your condition (as long as it is not an article from Dr. Oz, Dr. Phil, WebMD, Wikipedia or a Facebook forum) and sharing it. It could actually mean the difference between a quality life, and a life not worth living.

photoOver the course of my careers, education and being a medical oddity, I learned that it is not only important to know where to look for information, but how to look for it as well. I am grateful that my education started long before the Internet was even a “thing,” which is another way of saying I learned how to research using those things called books, periodical indices and encyclopedias. I think that my experience with tangible materials has made the info mining process on the web so natural for me. It is often not so much the tool we use, but the search terms we choose that lead us to the information we desire.
The absolute fist place I start my search for information on any issue is Google Scholar. This is simply Google that focuses the search results in professional literature, journals, and texts. Once I locate a result that is on topic and that is accessible (sadly, some results can be subscription only), I go to the references for additional information. There you can find many more topically appropriate resources. Often, you can learn additional search terms that are either “terms of art” or the fancy, scientific ways of referring to what you are searching for. Then, you can use these terms to search Scholar again, or go onto other sources of information. (Example: “dysautonomia” is not a term frequently used in US literature. The terms “autonomic nervous system dysfunction” or “autonomic disorder” will return more professional results in most searches.)
Additional sources that are excellent for gathering general info and details on diagnostics are the
Mayo Clinic and Medscape. I highly recommend registering for Medscape’s educational updates in your area of interest (such as Neurology and Cardiology, if you want to stay updated on autonomic system stuff.) There is a great educational update service on the Mayo site as well, called “Hot Topics.” You will have to register as a “medical professional” for both, but I’m sure you can figure that out…
There are many sites I have found helpful for each of my “medical challenges.” It would be far too overwhelming to list all of them here. I located all of my most helpful sites through the three sites I listed above. I have found excellent treating physicians and surgeons via these sources simply by noting the research principals for the articles that were specifically “on point.” If possible, you most definitely want to have a treating physician in ANY field to be involved in research at some point in their careers.
These guidelines can be applied to any medical issue. I hope that you find this info helpful to jump- starting the creation of your own personal list of resources.

I wrote a similar blog at the start of last year’s WEGO Blog Challenge. I have borrowed some of the text from that post and present here, the reasons why I continue to write about my health issues and challenges:
1. I have health conditions that are not typical that have been misdiagnosed since I was a child. The work that I have had to do (research, letter-writing and numerous visits to multiple doctors) just to get my conditions recognized and treated is ludicrous! No human being in the 21st century should have to dedicate every day of their life to researching their own ailments, making phone calls to research facilities and pharmaceutical companies, writing and calling doctors begging to be seen…patients SHOULD NOT have to resort to campaigns of this magnitude to receive a diagnosis and get help for their conditions.
2. Technology is available to everyone – its about time that we expect our well-paid physicians to do this research and diagnose their patients. There is a HUGE backlash by physicians against patients that do their own research – they even have a name for it, “cyberchondria.” I strongly believe that doctors need to realize that the few minutes they spend with patients before dismissing them is an insufficient and inefficient way to treat a patient with complex medical problems. Our physicians are trained to be diagnosticians, yet very few of them are actually doing this part of their job. If they don’t want their patients turning to the various questionable incarnations of health information available on the internet, then they should be proactive and research their patients’ health issues themselves. (I am extraordinarily blessed to have two such doctors that do this – it takes seconds to type in a search term and retrieve peer-reviewed journal articles and professional texts…so it IS possible for doctors to be successful diagnosticians within the constraints placed upon them by the health insurance industry.)
3. I think people need to hear the realistic side to having certain conditions. I do not see much value in the rainbows, unicorns and ersatz sunshine blather that crowd our bandwidth. This is NOT reality! We all find our own ways to “cope” – and not everyone has the loving family or immense support system that doles out sympathy and validation, or the large cash reserves to “cope.” I have never been one to be helped by hearing about how, for example, a certain Miss America “got over” being sexually abused as a child. That sort of esoteric nonsense was waved in front of my face for years by therapists, and worst of all – by my mother. The hidden meaning behind these messages sounds like, “YOU aren’t doing well because YOU are doing things WRONG and I am doing things RIGHT. I deserve ALL the attention because I AM RIGHT!”
Ouch.
I choose not to cruise the river of denial, and I refuse to validate the Münchausens among us so I bypass those deceptive meanderings. Also, I strongly believe, to quote a good friend, that “there is no place for unicorns in medicine.”
4. Patients have the responsibility to learn about their health conditions and not rely solely on what a health care professional tells them. The paternalistic model of healthcare is passe’. Twenty-first century medical treatment is a team approach – with the doctor and patient working together to manage the patient’s health challenges. As I have learned over the past 20 years, these health professionals DO NOT stay current on research and developments in their fields, while holding themselves out as experts.

Who am I to have such strong opinions? I am an educated and experienced researcher that utilizes only professional databases containing peer-reviewed journals and professional texts as the sources of my medical information. I also follow a couple of professional (read: doctors only) blogs to keep track of the advances (and back-sliding) in the professions’ attitudes toward doctor-patient communication and patients’ proactivity. I have learned how to navigate the murky waters of the healthcare systems in the US while advocating for competent health care for myself and my mother for over 26 years.