It’s Alright Not to Feel Okay…

For the most part, I try to stay positive about what I post on this blog. But, as most of you already know, life with a chronic illness is hard and it is definitely not always sunshine and rainbows as one might think – although I do believe that both would make things slightly easier to handle, don’t ya think? Nevertheless, there are just some things that come along with living “the sick life” that truly shake you to the core sometimes. For me, it’s hearing about other patients that have the same (or similar) diagnosis and have passed away as a result. I posted the following on my personal Facebook page a little while ago but felt it was important to share on this page as well. Sometimes you just have to say what’s on your mind because it’s good for the soul. In a way, venting allows me to grieve – not only on behalf of those that have passed but also for myself.


Sometimes I get so tired of hearing about my fellow warriors dying because their pain was not taken seriously or they couldn’t find the help that they needed. It’s becoming way too common lately and just thinking about how others have been treated because of their illness – hell, how I’ve been treated at times – makes me both physically and emotionally sick.

Trust me when I say that majority of people can’t even begin to comprehend the level of pain that those of us with vascular compressions live with each and every day. Or how much has been lost as a result of illness? Although I don’t necessarily agree, I can absolutely understand why many have chosen to take their own life.

Honestly, I’ve been lucky. It took a lot to just simply survive. Being misdiagnosed could have killed me. So could have all the wrong medications, treatments, and surgeries that have been offered to me along the way. I had to educate myself and challenge my care at every single step along the way. I’ve had to stand up to my doctors. I’ve had to fire some doctors. I’ve had to prove myself over and over again – prove that I was, in fact, sick; that I wasn’t imagining the pain – just so that my concerns would be heard and taken seriously. So that someone would help. Basically, I’ve had to fight with every bit of strength left inside of me just to get to where I’m at today – and no, I’m not better yet.

Obviously, this hasn’t been easy and I’m still in pain almost every day. Yet, somehow, I still hear that I’m not actually sick or that I’m not sick “enough”, even though test after test show’s that something’s seriously wrong and has been for a while. Eventually, something has got to give in the way we do medicine, especially when it comes to managing chronic or rare conditions. The gender bias in treating young women needs to stop as well.

No, it’s not anxiety! It’s not depression! And it’s definitely not in my goddamn head! These conditions are real and you would know that if you took a minute to listen.

Mostly, though, I’m angry – angry that this is somehow okay; that this is acceptable. I’m also incredibly sad as well. These tragedies could have been avoided. Most of these deaths are senseless. Something could have been done. The worst part, however, is that nobody cares. I repeat: nobody gives a damn.

Do you think the doctors cared when they heard that their patient had died? I doubt it.

Do you think the friends or family members who left when the person became ill and couldn’t get out anymore really cared? Not enough, obviously.

What about all the other people in their life who judged them, told them to try harder – to do more – to be more- to stop being lazy? Do you think they cared at all, really?

I cared, though… I still care.

Part of this is selfish, though, because I think about how easily that could have been me – and could still be me someday. I hear about the others just like me dying so frequently lately that the idea of death no longer scares me – it’s just par for the course at this point. How sad is that? I tell you, having a chronic illness makes you jaded.

I’m really trying not to be negative, but I’m so incredibly frustrated and disgusted that I just needed to vent. I just hope someone out there is listening.

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Whenever you need or want somebody to listen, I’m here. Just send me a message either here or on the Undiagnosed Warrior Facebook Page – I’d be more than happy to hear your story anytime.

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National Suicide Prevention Lifeline Magnet, SVP05-0126

National Suicide Prevention Lifeline Magnet

Please keep fighting fellow warriors!

Speak Up and Stay Alive: Discussion on Undiagnosed Patients

A look at the upcoming medical documentary – UNDIAGNOSED: Medical Refugees with Dr. Katia Moritz – Creator & Co-Director.

There is a hidden epidemic – millions of people living with perplexing illnesses that elude definition and treatment. Undiagnosed: Medical Refugees is a medical documentary about what it is like to exist in a constant state of unknown, struggling with undiagnosed illnesses and rare diseases, and existing as medical refugees in a modern health care system.

The film aspires to bring objectivity to this controversial and timely subject by interviewing doctors, medical administrators, and people, both children and adults, who have the misfortune of suffering without a diagnosis. Research and professional opinions combine with gripping stories into an incredible narrative that showcases the strength of the human spirit and the need for change in our medical system.

http://www.undiagnosedfilm.com

http://www.speakupandstayalive.com

Reference: Speak Up and Stay Alive. (2014, February 25). Speak Up and Stay Alive Patient Safety RadiOh! with Dr. Katia Moritz. Retrieved from https://www.youtube.com/watch?v=QwZon8YVepc

Undiagnosed: Medical Refugees Movie Trailer

There is a hidden epidemic – millions of people living with perplexing illnesses that elude definition and treatment.

Undiagnosed: Medical Refugees is a medical documentary about what it is like to exist in a constant state of unknown, struggling with undiagnosed illnesses and rare diseases, and existing as medical refugees in a modern health care system. The film aspires to bring objectivity to this controversial and timely subject by interviewing doctors, medical administrators, and people, both children and adults, who have the misfortune of suffering without a diagnosis. Research and professional opinions combine with gripping stories into an incredible narrative that showcases the strength of the human spirit and the need for change in our medical system.

PLEASE HELP FINISH THIS FILM BY DONATING at  UndiagnosedFilm.com

 

Reference: Undiagnosed Films (2014, June 3). Undiagnosed Kickstarter Trailer. Retrieved from https://www.youtube.com/watch?v=CaAwRtojHsc

Unidimensional Approach to Medicine: Why It Isn’t Working

From a global perspective, a multidimensional approach to health and wellness has long been considered the gold standard for both diagnosing and treating physiological and psychological illnesses or disease. Even the most widely used definition of health, which comes from the World Health Organization (WHO), defines health as being “a complete state of physical, mental, and social well-being” (Gurung, 2014, p. 6). However, the United States focuses the majority of its interventional programs and healthcare management around the traditional medical model of health – a unidimensional approach that provides a simple black and white definition of health in terms of simply lacking disease. According to Shi & Singh (2009), the medical model “emphasizes clinical diagnosis and medical intervention in the treatment of disease or its symptoms. Under the medical model, health is defined as the absence of illness or disease. The implication is that optimum health exists when a person is free of symptoms and does not require medical treatment; however, it is not a definition of health in the true sense but a definition of what is not ill health” (p. 28). The efficiency of the medical model in health is highly debatable and has proven to be ineffective in managing the overall health and wellness of the American population thus far. “Many of the peculiarities of this system can be traced back to the beliefs and values underlying the American culture. The delivery of healthcare is primarily driven by the medical model, which emphasizes illness rather than wellness. Even though major efforts and expenditures have been directed toward the delivery of medical care, they have failed to produce a proportionate impact on the improvement of health status” (Shi & Singh, 2009, p. 46). As we have learned throughout this semester, assessing health from a multidimensional approach is far more practical, especially given the complexity of health and health-related behaviors. Still, much of the contemporary model of health in America is still based primarily on the medical model of health for a number of reasons.

For instance, one of the key explanations that Americans rely solely on the medical model is that have had little to no exposure to other medical models of practice. It’s human nature to stick with what is comfortable and changing behavior or perspective is often a difficult and tedious process. Considering that both psychologists and medical professionals have long developed interventions and treatment programs around the medical model, primarily because it centers around what they’ve learned both in school and in clinical practice, it’s difficult to move away from the medical model as the accepted norm for managing health. As Gurung (2014) mentions, there are three main obstacles that prevent health-related interventions from reaching the clinical populations they have been designed for: “(1) researchers not always understanding the clinical applicability of their basic research; (2) a reluctance of clinicians to accept the value of their basic research; and (3) various institutional-level constraints such as the lack of time, training, or funding” (p. 435).  All of these become problematic in approaching health from an alternate perspective because the lack of knowledge or evidence drives enough motivation for change. For example, both training programs and continuing education for health practitioners don’t generally educate on the biopsychosocial approach health, making the idea seem even more unfamiliar or accepted. “Only a few existing programs provide the necessary training to facilitate the development of health collaborations, and this is another key training area for the field to incorporate” (Gurung, 2014, p. 435). Similarly, since the biopsychosocial approach is relatively new in terms of research and practice in the United States, despite being around for centuries in other cultures around the world, there is just not enough evidence not clearly support or influence professionals to transition to the biopsychosocial approach. Finally, healthcare professionals are reluctant to move away from the current medical model, even when they strongly believe in the biopsychosocial approach to health because of the financial burden it places on both themselves and their patients.

Many of the biopsychosocial approaches to health care and management often are reimbursed by insurance under the current medical model of health and billing becomes problematic with the limited availability of medical codes that are acceptable for what insurance sees as unnecessary, experimental, or alternative treatment options. For example, there are six codes that clinical health psychologists are permitted to use and only certain health plans accept all six of the codes. Medicare, for instance, accepts only five of the six CPT codes for insurance reimbursement (Gurung, 2014). “Not being reimbursed by insurance companies has been one of the biggest reasons for not enough attention being paid to psychological factors and treatment – most patients cannot afford to take care of their mental or physical health if their insurance refuses to pay for the services they need; if health providers do not get paid, they cannot afford to conduct research” (Gurung, 2014, p. 437).  Also, the diagnostic codes for mental illness are subjected to the scrutiny in a similar manner as CPT codes. Take the treatment of mental illness, for example. According to McLeod (2013), “psychiatric diagnostic manuals such as the DSM and ICD (chapter 5) are not works of objective science but rather works of culture since they have largely been developed through clinical consensus and voting. Their validity and clinical utility are therefore highly questionable, yet their influence has contributed to an expansive medicalization of human experience” (para. 38). Assessing and diagnosing patients under psychological or psychiatric care also becomes an issue in terms of credentialing, which can vary state by state, and ethical concerns have been raised about psychology professionals both diagnosing and treating patients without a traditional medical license. Although there is increasing evidence of the effectiveness of the biopsychosocial approach to medicine and health, there likely won’t be any advancement in moving the healthcare system of the United States over to a biopsychosocial approach until many of the above issues have been formally addressed and regulated.

Aside from the limited exposure to the biopsychosocial model in terms of professional utilization, the American public will likely remain reluctant in accepting a multidimensional approach to health for additional reasons outside of the current system of healthcare. For starters, the public overall lacks general knowledge in proper management or coping skills in dealing with health. Most of the information that is accessible to the public is both overwhelming and confusing, and many health reports provide conflicting information. Take the question of “what is the best diet?” for example. It has been ingrained in us from a young age that in order to be “healthy” we need to both eat right and exercise regularly. However, this concept often brings up more questions than it does answers. For instance, what is healthy to eat? What is a balanced diet? How much and when should I eat? How much should I exercise? What type of exercise? The questions are nearly endless. For those looking to change health behaviors, such as diet or exercise, often look for answers to the questions above. However, it’s likely to cause more confusion since there is no consensus or definitive evidence that constitutes right or wrong answers in this specific example. This becomes more evident in reference to the difficulties in defining the term health, as there are too many aspects to account for defining optimal health, making it challenging despite the growing number of theories regarding health and wellness.

Lastly, the importance of practicing healthy behaviors is, unfortunately, deficient within the modern American culture. As I mentioned earlier, both lifestyle choices and behaviors are among the chief determinants of health, however, initiating or activating behavioral change is extremely difficult to achieve and maintain over time. It’s human nature to be uncomfortable with self-awareness and often resistant to acknowledging their own unhealthy or negative habits that may contribute to health. Changing over to a biopsychosocial approach “would require a fundamental change in how Americans view health. It would also require individual responsibility for one’s own health-oriented behaviors, as well as community partnerships to improve both personal and community health” (Shi & Singh, 2009, p. 47). Once again, the lack of biopsychosocial approaches to interventional health behavior contributes to the minimization of healthy behaviors or practices and not all practitioners are sold on solely a biopsychosocial approach. “Surprisingly, not all parts of the scientific community saluted the importance of health behaviors, a controversy in the field of health referred to as the great debate” (Gurung, 2014, P. 423). Furthermore, the American culture has become increasingly sensitive about discussing health behaviors as to not offend others around them and there is limited knowledge of the health disparities affecting the majority of the population in one way or another.

Still, despite the number of obstacles still left to overcome, the biopsychosocial approach to medicine and health is slowly gaining momentum in the United States.  As more patients are becoming increasingly frustrated with American health care practices under its current standards, Americans are considering alternative forms of treatment as an option for managing their health, including holistic medical practices and therapies focused on the mind-body connection. It’s likely that as the field of health psychology continues to expand while health care in the United States declines, both medical professionals and their patients will be more willing to change their opinion on the biopsychosocial approach to overall health.

References:

Gurung, R. A. (2014). Health Psychology: A Cultural Approach (3rd ed.). Belmont, CA: Wadsworth.

McLeod, S. A. (2014). The Medical Model. Retrieved on February 26, 2016, from http://www.simplypsychology.org/medical-model.html

Shi, L. & Singh, D.A. (2009). Essentials of the U.S. Health Care System (2nd ed.). Sudbury, MA: Jones and Bartlett Publishers.

I can’t take this anymore and I’m almost pretty sure I’ve been here before…

I’m tired of having to prove

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HOW SICK I AM…

It seems like a never-ending battle at this point. Although I have multiple diagnoses currently, I am continually asked to provide the evidence that I am, in fact, actually sick. It’s becoming exhausting.

First it was with the doctor’s, claiming my symptoms to be all in my head.

Then it was with Short Term Disability, where I was denied initially and told that “I am not actually sick”. They then approved me, of course, with more “evidence” – AKA spending my free time in hospitals, going from doctor to doctor, to find even a clue to the cause of my mysterious symptoms.

Next, SSDI wanted me to not only prove that I was sick, but sick enough – according to their standards – to be disabled. Months and hundreds upon hundreds of pages of medical records, I am told I am NOT disabled because “despite my substantial limitations and exceptionally large medical record,  somewhere out there is a flexible job in which I can lift a single piece of paper for an hour or so a day” (Their words, not mine).

After this, I finally got to meet with a surgeon who could supposedly help me. He said that while he does see the vascular compressions and they COULD POSSIBLY be the cause of all my symptoms, a CT scan and CT Angiography are not enough proof that I am actually sick – because it could be coincidence, after all. He told me to either come back with more proof or keep searching for another answer.

The vascular surgeon I saw before him also told me the same thing. Meanwhile, my current vascular surgeon is “worried treating me will make everything worse” – like it could potentially get better on its own? I’ve been having symptoms over 20 years, so that’s highly doubtful.

I’m in the process of converting my Short Term Disability into Long Term Disability – another way in which I get prove how sick I am once again.

I told my therapist that it’s like literally living through the definition of insanity – repeating the same things over and over again, expecting a different result.

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  • We’re repeating tests at this point, getting no new answers.
  • No treatment either, just nonstop appointments and medical tests.
  • Where do I “keep searching”?

So far, I’ve seen: 

Multiple Primary Care doctors

Multiple Gastroenterologists

Multiple Cardiologists

Multiple Vascular Surgeons

Multiple Psychiatrist/Psychologists/Social Workers

Multiple Urgent Care Clinics/Hospitals

Multiple Gynecologists

Multiple Dermatologists

Multiple Chiropractors

Neurologist

Immunologist

Rheumatologist

Urologist

GI Surgeon

A Psychic Medium

When does this madness end?

Does it ever end? Will I ever get a break? 

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When is it finally time to give up?

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In the meantime, I am getting worse – and more systems are becoming affected. Not to mention that two young girls that belonged to one of my online support groups passed away last weekend (both of which were diagnosed as having one of the “controversial” vascular compression syndromes that may or may not be causing my symptoms). One of their stories, sadly, hit a little too close to home.

Her name was Alyssa Landrith and she was only 18 years old. She fought the medical system for many years, told it was all in her head and that she suffered from anorexia. Even after her SMA Syndrome diagnosis, she still had to fight for treatment. As a result, she left this world far too soon – unnecessarily. Not surprisingly, her mother’s announcement was heartbreaking to all of us in the SMA support group. However, the blow is even harder because Alyssa represents a small part of each one of us that are fighting this illness.

Her story is my story – and other people’s stories. 


Pictures from the SMAS support group and Alyssa’s Go Fund Me Page:

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“This beautiful girl lost her life to starvation Friday evening November 6, 2015.  She was eighteen years old.  She had Superior Mesenteric Artery Syndrome and Gastroparesis, both rare digestive conditions that my daughter also is battling. Her name is Alyssa Landrith.  Her mom is Lori Landrith.

This picture was taken before the illness set in. She has slowly starved to death. She continued to get sicker, while medical institutions diagnosed her with psychological conditions (which were secondary to the digestive conditions).”

Retrieved from  Alyssa’s Go Fund Me Page


Many years ago, when I got down to 87lbs, this could have been me!

Somehow, I learned to compensate – perhaps not in the healthiest way, but it has kept me alive.

Still, the reality of living like this my whole life,

with no treatment or intervention,

is both terrifying and heartbreaking.

How do I make the doctors understand?

How do I PROVE to them that this is real?

That all the vascular compression syndromes are real?

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There’s got to be a better way. 

There’s has to be a reason to keep searching.

Maybe someday I’ll find hope once again.


“I can’t take this anymore
And I’m almost pretty sure
I’ve been here before
I can’t take this any longer
I won’t heal until I’m stronger
Strong enough to not be afraid
Of what anybody thinks
Of what anybody says
About the way
About the way I am
So I’ll wait until the day
When those feelings fade away
Then I’ll make my break

Everybody and everything I’ve known
Never taught me how to stand up on my own
Had to learn it from the one who let me go
Now I walk alone
Yeah I walk alone, yeah
I walk alone
I walk alone
I walk alone
I walk alone
I walk, oh yeah”

(Oleander – I Walk Alone)