For Those Who Are Imperfect and Still Struggling: You Are My Heroes

In a land of inspirational TED talk speakers, those who’ve gone through the chaos of mental illness and come out the other side as motivational speakers, do you find yourself still struggling in your 40s and trying to keep it together? You aren’t alone.

I’m not bashing those TED talks either. I applaud each and every speaker who stands up there to motivate and inspire the masses. It’s amazing and I listen often. What I am saying is that sometimes, for a lot of us who are still struggling, it’s okay. I’m not saying that every speaker has their lives in complete order either, but there are times when I listen and it feels like an auditory version of Face Book or Instagram. It’s their filtered, selfie-version. Sometimes, I want to hear someone up there saying that life is fucked up and they don’t have it together and every day is a struggle but they are managing. They are managing day-to-day and hour-to-hour and it’s okay. Because those people- they’re my heroes too.

As I brain-stormed about this idea I reflected on my own posts through-out my blog as well as other writings I have done for other sites. I wondered if I appear the same way that some of those TED talk speakers do to me. Flawless? Put-together? Was I only allowing my readers to see a fraction of what is my challenging life? The answer, I think, is a complicated one and maybe a complicated one for a TED speaker too.

Whether it’s a PodCast, or TED Talk, or a Blog post; Instagram or Twitter Post, the audience is never getting the full picture. They don’t see us 24/7 (thank goodness!) and so there is never going to be a complete image. I believe the whole point of TED talks are inspirational speakers. I know my blog is meant to be uplifting and while I have received comments from readers who’ve called me inspirational, I didn’t set out to be and I certainly don’t feel it from day to day. I am just a girl who is trying to get by, from one day to the next, successfully. There’s a lot that goes into that.

My purpose in this slightly rambling post is this: It’s not all sunshine and rainbows for anyone. Don’t let anything you see, hear or read make you feel badly about yourself. Don’t sit there and compare yourself to someone who maybe had similar things going on and wonder why you haven’t made it out to the other side of that dark tunnel. Your circumstances are never the same as someone else and so you shouldn’t add anymore pressure or grief into your life. I know it’s not easy. Here I am all judgy on TED talk speakers like they set out to shame us when what they are doing is quite the opposite. But I think it is very easy for us to see only part of the story and maybe that is human nature.

As I said right from the start, you aren’t alone. I am no where close to living an idyllic life. I have not yet reached enlightenment! Each day is a renewed effort to make it through, what is, a very challenging life. Like you, I have many imperfections and flaws, some of which I was simply born with, like my mental illness and health issues. Others, are of my own doing, like my brooding, or my inability to say no even when I should. I have external challenges like you too. These are things like my children, who while adults (in varying stages), and still living at home, continue to test my parenting skills as I navigate from being parent-to-child, to advisor-to-adult, while always remaining that loving Mom to them. It’s tough. I have bad days, just like you do and sometimes…I fail miserably. But when I do fail, I try very hard to learn from that situation so that I do it differently the next.

One of the things I don’t talk about as much as my chronic illness and pain, are the mental health struggles. I think it’s easy to forget when it’s not brought up, or when we hear an inspirational talk about how they put their lives back together, that the mental illness is still there. It didn’t go on vacation, or disappear and it certainly hasn’t been cured. What has changed is how the person has learned to deal with it, recognize symptoms and use tools that they have learned to cope with it. Don’t be sucked into some false idea that because they are up there talking about it, almost as if it is in the past, that it is in the past. The only thing in the past is the chaos that was because they didn’t know how to deal with it. That is what changed. I deal with my bipolar every day. I live with my anxiety and OCD and PTSD every day. I haven’t quite gotten to that place where I cope with it and know how to deal with it. Some days aren’t great and I forgive myself for that and go on. Each day gives me the opportunity to learn how to deal with my mental illness and that is all I can ask for. A new day.

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The Big (not so) Beautiful Lie

When you are first diagnosed with chronic illness/pain, you are very quickly acquainted with dread and fear which are inextricably linked, in addition to overwhelming anxiety. Chronic illness and pain are something which are uniquely foreign to that which we are accustom to. These are not the flu or a cold, or a twisted ankle from tripping on a dog toy. This is something long term (hence the chronic), for which there is no easy remedy or medicine to cure it. Once you’ve been able to process the diagnosis and conquer the dread, you become more optimistic, regardless if you are naturally pessimistic. I think there is a natural, human desire to want to look at the most positive outcome when you are sick and especially, if you are in pain.

Research mode, typically follows this period of distress and positivity, and when I say research, I mean research. Whatever the ailment maybe you are delving into books, diving down the rabbit hole of Google and looking for anything you can find that might help you battle whatever it is you are fighting. You search for groups on Face Book where you can meet people who are going through the same thing, in hopes of not only finding some comradery, but maybe some clue in how to battle this thing and win. You become a person, previously with no knowledge on the subject- maybe not even knowing it was a disease at all, to someone who might as well have an honorary PhD. However, after all that fervor for learning, what happens next is very anticlimactic; nothing. You may find some things that alleviate some of the symptoms; you may walk away with a few new friends who become an extension of your support system, but you find little in the way that makes a dent in how you feel from day to day. (This can vary from person-to-person.)

Weeks go by; months go by; and sadly, for many of us, years go by with little change. What began as a moderately optimistic journey toward recovery becomes a portrait of self-criticism. What I mean is, doubt creeps into our psyche. Did I do something to cause this? Should I have changed my diet? Become Vegan? Should I have switched all my commercial cleaning agents to essential oils? Stopped drinking soda? Drank more green tea? The questions posed in this self-interrogation are endless and the questioning can continue quite a while, covering your entire childhood through your adulthood. It is this idea that if you were just able to do something different, either through your diet or what you are exposing yourself to externally, that you could get better, or better yet, cure yourself. This is the big, not so beautiful lie. This is what many of us zone in on, trying to assign blame to something, not being able to accept it might be the luck of the draw and that sometimes we simply don’t have control over what makes us ill.

Part of the fall-out from this is when strangers or even extended family members issue us advice on how to get better. There is an inward clenching and mental eye roll as we try to maintain our manners. It’s not their fault that they don’t understand, right? I wish I could be more forgiving when someone advises me on the fine attributes of turmeric, but the fact is, if I haven’t already tried it, it’s likely I know about it, courtesy of my intense research. This isn’t an effort to bash those that mean well, rather, it’s an effort to help them understand and by changing the way they word something, come across less assuming and more genuinely interested to help. Example: “You should be taking turmeric. It will help you feel a lot better. I read…” Instead, “In case you haven’t heard, I read turmeric is really good for inflammation…” or “Have you heard about turmeric? I learned it might help bring down inflammation…”
Lastly, if you are struggling with chronic illness/pain, remember it’s not your fault. Stop telling yourself these big, not so beautiful, lies and be kinder to yourself. You are already going through a lot, and self-blame will not help you.

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Defining (Yourself) Disabled

Recently, on my Twitter feed, I saw this question: “Do you define yourself as disabled and why?” To which I replied: “Disabled has become such a negative word. ‘Don’t limit yourself,’ they say. Newsflash: It’s not limiting, it’s describing me. I have a disability. That’s me. I still achieve and dream and pursue.”

I hate the negative connotations that surrounds the word disability. The entire word itself annoys me. Dis-able: the inability to do something; you are literally not-able. The flip-side is an effort on the -able side of things to “help out” by putting a positive spin on things: “Don’t limit yourself!” “Defining yourself as disable is setting yourself up for failure.” I’ve also heard, “You are only as disabled as you believe you are.” I can’t tell you how much that makes me twitch, and while well meaning, I’ll explain why it irks me so badly. Much of what I feel is summed up in that Tweet.

In my mind, to be disabled can imply many things that might be seen or not seen by the naked eye. There’s a greater chunk of my life that I did not see myself as disabled, even though I struggled with issues that others might consider a disability. For instance: I’m bipolar, I struggle with anxiety, OCD and more recently (within the last 7 years) I was also diagnosed with PTSD and ADHD. All of these things, separate, or as a lump sum, can be seen as disabilities. But I did not see myself as a disabled person primarily because the -abled world has difficulty with mental illness qualifying as a disability because it’s not seen.

In the last five years, however, with the advent of my many physical issues making it difficult for me to walk, and with my health in such a state that work has become impossible and even managing day-to-day activities difficult, I see myself as disabled. The interesting thing, is the sudden awareness that I felt when I realized I have been disabled all along. And while these disabilities are an inherent part of who I am, even define me in a very basic, physical way, they do not define what I can achieve or dream or pursue in my life. I am disabled. The disabilities are a part of who I am. But the disabilities do not determine what I might become.

I do not want to sound presumptuous here and I am afraid I am in danger of doing just that. I know I may not have the same perspective as someone who has had a more difficult time but I am striving to understand it all better. As an advocate for the chronic illness/pain community I feel it is important that I understand how others view disability as both a term that is used to define them and how they use it to define themselves. I know it is fundamentally different to have lived disable all your life and have something happen where you find yourself disabled, but I think we can use both points of view in our efforts to make it a better world for those of us with disabilities. Ultimately, this is the common goal. A better world socially, and a better accessible world for all of us.

[This isn’t the first time I’ve written about this and likely not my last. Everyday that I live with my own disability, as well as meet new people managing their own disabilities, I learn more about what it means to be disabled. As always, thank you for reading.]

When Pain Kills

[As seen in National Pain Report 8.18 Written by Liza Zoellick and Janet Zureki]

Pain has a profound impact on the quality of life and can have physical, psychological

and social consequences. It can lead to reduced mobility and a consequent loss of strength,

compromise the immune system and interfere with a person’s ability to eat, concentrate, sleep,

or interact with others. According to international human rights law, countries have to provide

pain treatment medications as part of their core obligations under the right to health: failure to

take reasonable steps to ensure that people who suffer pain have access to adequate pain

treatment may result in the violation of the obligation to protect against cruel, inhuman and

degrading treatment. [1] According to a World Health Organization(WHO) study, people who

live in chronic pain are four times more likely to suffer from anxiety and depression. Because of

this, WHO has stated that for mild to moderate pain it recommends a combination of basic pain

relievers and a weak opioid. For moderate to severe pain, the WHO has recognized that strong

opioids, such as morphine are absolutely necessary.[2] Medical abuse of patients in chronic

pain and suffering is a violation of basic human rights. Humans in pain placed in cages.[3]

Although the 1961 Single Convention on Narcotic Drugs lays out some minimum criteria for the

handling of opioids, governments may, under the convention, impose additional requirements

if deemed necessary.[4]

 

In 2016, The CDC came out with its voluntary guideline for prescribing opioids for

chronic pain. This guideline provides recommendations for the prescribing of an opioid pain

medication by primary care physicians for chronic pain. According to this guideline:

When opioids are started, clinicians should prescribe the lowest effective dosage.

Clinicians should use caution when prescribing opioids at any dosage, should carefully

reassess evidence of individual benefits and risks when considering increasing dosage to

>= 50 MME/day, and should avoid increasing to >=90 MME/day or carefully justify a

decision to titrate dosage to >=90 MME/day.[5]

MME stands for the morphine milligram equivalent and according to the CDC, 90 MME breaks

down to 90 mg of hydrocodone daily, 60 mg of oxycodone daily, or 20 mg of methadone

daily.[6] Dr. Lesly Pompy, states “This standard is unconstitutionally vague and does not

promote scientific patient care”. Even though a Doctor can justify patients receiving more than

90 MME per day, most are reluctant to and some have started force tapering their patients

down to the 90 MME limit. Tolerance is patient specific because the scientific laws of

pharmacodynamics and pharmacokinetics is patient specific.[7] When it comes to tapering

down patients, the CDC states that for patients that agree to taper opioids to lower dosages,

clinicians should collaborate with the patient a tapering plan. [8] Although the guideline is clear

that the patient needs to agree to the tapering, many patients are being forced tapered instead

and are being left without proper pain control. This forced tapering has many patients have

turning to alcohol or illegal drugs to cope with their pain, unfortunately, some with devastating

consequences. This practice of forced tapering has also lead to pain patients committing

suicide.

 

The question has been raised, are CDC guidelines are causing more suicides? That

answer is not clear because experts believe many suicides go unreported or are misclassified as

accidental, often covered up by grieving family members or accommodating medical

examiners.[9] Suicides related to pain often get classified as something else like depression,

or families are too embarrassed to admit that it was the pain that caused their loved one to

commit suicide. Dr. Thomas Kline has been keeping track of patients that have committed suicide on a

pinned post on his Twitter page of patients that took their lives after being forced to taper

down or completely off of their medicine and shares their stories.

According to the CDC, Suicide rates in the US rose from 1999-2016 by

25.4%.[10] One fact does remain true, pain patients are indeed committing suicide due to their

pain.

Some of the strictest laws regarding opioids dispersal is in Florida and Kentucky which limit initial opioid prescriptions to a 3-day supply.[11] I spoke to an incredible pain warrior recently, Trina Vaughn, who lives in Kentucky but is currently making a journey to Colorado because of the changes to opioid laws. Trina is 60 years old and suffers from fibromyalgia, severe osteoarthritis and tinnitus among some other chronic illnesses. She has been medically retired and on disability since 2007. In her town of Bowling Green, Kentucky, she had the same pharmacy and same doctor for 20 years, until doctors were forced to stop writing pain prescriptions and patients were forced into two pain clinics, IPS: Interventional Pain Specialist or CPS: Comprehensive Pain Specialist. Her first encounter was with IPS, an experience I would not wish on anyone, began with being admonished for using the bathroom prior to them giving her a drug test to a doctor who was dismissive of several of her conditions yet after she disclosed five back surgeries became more receptive to pain medication, even giving her a choice of oxycontin and hydrocodone until she expressed that she preferred hydrocodone so she could break pills in half to adjust dosing. When this was revealed he told her that she would take the pills three times a day as prescribed or be dismissed and never allowed to return to the clinic. After reporting the incident, her next encounter was with CPS where she did not fare much better. Though the initial visit with the doctor went well, the next visits did not. Though she made attempt to explain ahead of time what her urine sample would show the doctor interpreted her as “non-compliant” and without an attempt at listening dismissed her as a patient and sent her packing. No prescription to tide her over and no explanation other than “non-compliant.”

This is happening everywhere and because she was left with no where to turn, Ms. Vaughn was left with an excruciating decision to make. Leave Kentucky; leave her husband and move alone to Colorado where she has better prospect of treatment. Most of my conversation with Ms. Vaughn was exchanged via email as she travels to Colorado. I could not help but worry about her on such a long trip, though she seemed very well prepared for it. This is the reality and the effect of the opioid war on patients. I chose to focus on Ms. Vaughn’s struggle because there are many more going through the same thing but without the recourse of traveling to another state to get the help they need. It is inhumane to force a pain patient to travel cross country just so they can get the help they need. It is inhumane to allow the suffering of pain patients who cannot travel and therefore cannot get the help they need. This is where patients become desperate to end the pain. These are the faces of the opioid war.

 

 

 

 

 

 

 

References

1. Access to pain treatment as a human right. Diederik Lohman, Rebecca Schiefer, and

Joseph Anon Source: ncbi.nlm.nih.gov

2. World Health Organization. Achieving Balance in National Opioid Control Policy.

Geneva. WHO. 2000 Source: ncbi.nlm.gov

3. Dr. Lesly Pompy, text message interview 7/9/18

4. United Nations Single Convention on Narcotic Drugs. UN 1961 Source: ncbi.nlm.gov

5. Foley KM. Ideas for an Open Society: Pain Management 2002 Source: ncbi.nlm.nih.gov

6. CDC Guideline for Prescribing Opioids for Chronic Pain- United States 2016 Source:

CDC.Gov

7. CDC Guideline for Prescribing Opioids for Chronic Pain- United States 2016 Source:

CDC.Gov

8. Dr. Lesly Pompy text message interview 7/9/18

9. CDC Guideline for Prescribing Opioids for Chronic Pain- United States 2016 Source:

CDC.Gov

10. Balletpedia.com

11. Opioid epidemic: New laws restricting prescriptions go into effect in these states.

Source: Usatoday.com 7/1/18

 

 

Chronic Suffering

To not have your suffering recognized is an almost unbearable form of violence. – Andrei  Lankov

**Trigger Warning**

 

As a community I feel we try to give the validation and understanding that many within our community aren’t receiving on the outside. I can’t say how many times I have read a post on a chronic illness board, and read how truly excited people are that for the first time they are understood and not alone. But while we may feel less alone when we venture to these community boards or Spoonie chats, eventually, we have to return to our reality, and for many of us that reality is incredibly lonely along with being incredibly painful.

When I talk about loneliness I do not necessarily mean the state of “being alone.” Many of us have family, kids, spouses and friends who are supportive and many of us have jobs and other hobbies and interests that keep us busy. The loneliness I am speaking of transcends beyond that which we associate with absence of people in our lives. This loneliness is insidious and pervasive because even in a room full of people we can still feel incredibly isolated and alone.  It’s a loneliness born from the isolation we feel as we endure the constant assault of pain on our bodies. This pain is not limited to the physical either, but the violence that takes shape through the neglect we feel, as our suffering goes unrecognized by so many, including those who love us and a medical community that is supposed to care for us. To a certain extent our effort to try and be normal, to buck up like good little soldiers and press on, to smile when we’d rather be crying and to sugar-coat how we are feeling to others when asked, has not done us any favors. It has left the perception among the “non-chronic,” that we aren’t quite as bad as we seem and worse, that we are lazy drug-seekers, looking to milk the system through disability. The indifference that we feel from those outside our chronic community is lethal.

Just for a moment, I want you to imagine with me this: You go from being a vibrant human being with friends and family, a great job and fulfilling hobbies, until one day you wake up sick. At first no one can tell you what is wrong even after test after test. Then, they tell you it’s all in your head and that you should get outside and exercise and you will feel better. Another doctor tells you to see a psychiatrist because he’s given up on finding anything and later on, pain management treats you with flagrant suspicion and red flags your chart as a drug seeker. In the mean time, your spouse (though they may love you) doesn’t know how to help you because they don’t understand what’s happened. You aren’t running a ridiculous fever and covered in lesions so why do you always hurt and why do you always feel so tired because you really do nothing all day? Your friends drop you like last season’s faux fur and if family wasn’t family you are pretty sure they would too. Working is reduced at first before being cut to part time before you can’t at all and you have to fight for disability. Anything else you once did for pure enjoyment is drastically reduced. You find yourself attached to the computer because it is a lifeline to normalcy, where you can talk to other people who understand this new reality. Then, when you are forced to leave those who have become surrogate family and friends, to be thrust back into an apathetic world you realize just how much you have lost and the knowledge of that can be too much to bear.

A few days ago I lost a friend I’d made on a chronic illness board. We’d been chatting back and forth and learned we were in the same city, planned on meeting after the holidays and then the holidays passed and I didn’t hear from her. But holidays are taxing and we all understand there are good days and bad days so I really didn’t think much when we celebrated New Year’s and I hadn’t heard from her. So when I received the message from her husband that she had reached the end of this battle with her illness and took her own life, I was devastated. The devastation coming from the intimate understanding of why she chose to end her life. This does not mean I am suicidal, or that anyone with chronic pain who has considered at some point, ending their own life is suicidal. I think that when you are living with pain that no one can control and you realize one day that it could be like this for 20-30 years, it can be an extremely daunting and terrifying thought. Also, let me say, that I am not condoning the act of suicide, merely saying that as someone who struggles with chronic pain and loneliness, that I can empathize with her thought process.

Her death is a tragedy. It is both a personal tragedy and human tragedy.  Her family will have to continue without her, enduring all those life moments with her  but it is  still  also reflective of something much larger. Her death sheds light on  the inadequate efforts taken to both understand and effectively treat chronic illness/pain, that may have prevented this entirely. Perhaps each and every suicide that is driven by interminable pain and loneliness, should be a teachable moment for those within the medical community and also, those making opioid laws, that they might endeavor to do better for those patients suffering. Perhaps, a picture of her face, and one for each of those countless others who have believed that their only option was to end their life should be assembled before lawmakers and hospitals and doctor offices, that they can see the true suffering that stole their life away.

*Written for National Pain Report 1.18.18. I chose to share it again because suicide among those with chronic pain is very real. No one should feel suicide is a better alternative to living because of the pain they’re in. No one should be pushed to suicide because they were force tapered from their medicine. We are not addicts.

When Calling the Doctor Feels Like You’re an Inconvenience

Scenario: It’s been roughly three weeks since you’ve seen your doctor. He/She prescribed new meds and you think you aren’t tolerating them well. The scenario could be anything you like, but how you question yourself remains the same just as your reluctance to call the doc up.

 

In my scenario I use the word think as a descriptor in how you are tolerating the medicine because in the grand scheme of the rainbow of symptoms, we, as chronic illness patients can sometimes feel, it is not always easy to determine the why of an onset of new symptoms. It is also difficult for me, to decide whether or not to call the doc and share with them the symptom, out of fear that it is all in my head or not really worth the docs time, and that it will go away in a couple of days. If you are like me there is a certain amount of agonizing before calling the doctor. You have a mental checklist that you have to mark off, nearly all the boxes, before it is deemed legitimate enough to call the doctor. Alright, maybe it’s more like guidelines, but ultimately, it’s a way that I feel my concern is serious enough to call the doctor.

But what is serious? What is serious to you and me are probably different, and what is serious to a doctor is definitely different. I’ve also seen enough doctors that I feel I can make the statement that, male and female doctors can see things differently. This isn’t a blanket statement, just an observation from the many doctors I’ve seen for myself and on behalf of my children. This confusion, as a result of differing bodies and differing doctors can make navigating what to do when something new crops up, very difficult. So difficult in fact, that I spend quite a deal of time stewing in my own anxiety, working myself up and probably making it worse. I wish all doctors made it easier for chronic illness and chronic pain patients to come to them when they had concerns. For example, my rheumatologist gave me her email. This is a great source of relief to me because I can bypass the staff and nurses, trying to explain what is going on and just  leave a message for her. Then, she can email me back advising me if I should come in for a visit, or something else I can do to ease the problem. This may not be something every doctor can do for every patient, but there should be some way bridge this difficulty. Life is already so difficult trying to manage chronic illness/pain. The majority of us come with comorbities that include a staggering number of symptoms that aren’t always there but fluctuate. It’s also pretty common to experience new symptoms that weren’t there before. For instance, I have developed an allergy to adhesive. Never had an issue before and I’ve had a lot of experience with them. It’s annoying.

I wish there was a way to improve the doctor/patient relationship so that the patient doesn’t feel like they are bothering the doctor and the doctor doesn’t feel like the patient is calling all the time. I do understand the need for a doctor to have some off time where they aren’t on call every day and every hour. I also think it is important that the patient feels they can come to their doctor with issues and not feel like they are troubling them. I don’t mind waiting until the end of business hours when they are not busy caring for other patients to get a call back. I don’t even mind if they just leave me a message. But I’ve had doctors not return my call for days, after which I had to take myself to the clinic, where I ended up needing additional meds. I’m not saying I know how to fix this issue, but I think it would be great to open up a discourse with the input of patients, to see how it could be fixed.