Post Concussion Syndrome

This has been a story in the making for over a year now. I am now released from worker's compensation and feel able to share my story with Post Concussion Syndrome (PCS).

In 2015, I fell at work and hit my head due to my blood pressure bottoming out. I didn't have a concussion from that fall, and it wouldn't be until 2022 that I would come to understand how so many of my health changes stemmed from that single fall that caused me to develop Abdominal Migraine.

In early February 2023 I fell on the ice at work injuring my head and my right knee. I didn't even land on my knee but yet I twisted it in the process. At first, I didn't think anything about it really. I immediately hurt from my fall, as I would expect. I called my neurologist's office to let them know I had hit my head so that they were aware and that I was feeling alright except for the expected pain from a fall. However, within a few hours, things started to change. I started having pressure in my head, headache, my concentration and speech were off, I felt funny. There was such a remarkable difference in my speech alone that when I called my neurologist's office back, I was told that I definitely needed to go the ER for evaluation.

My mom took me to a small, local ER. In spite of being there for concussion symptoms, the ER doctor was only concerned if I was vomiting and if I had hurt my knee and neck. He ordered a knee x-ray and a neck CT scan - both were unremarkable. He said I scored a 15 on some scale (which was really good evidently), I wasn't vomiting, and I had hit the back of my head so he wasn't concerned about a severe concussion and therefore he wouldn't order any imaging of my head. I didn't realize until after I was released that I don't think he asked me if I was having any other symptoms other than pain and vomiting. The only reason that the ER doctor explained why he wasn't worried about a severe concussion and would even use the word "concussion" with me was because I kept asking every staff member that came into my room why I wasn't having any imaging tests of my head. Word got back to the doctor, and he decided then to say anything about a concussion to me. Even then, he would only say "you might have a mild concussion". Might my ass. And the only instructions I was given were by the nurse who warned me about increased symptoms if my heart rate increased over the next couple weeks and to take Tylenol or Ibuprofen. A day or two later, I realized that I hadn't advocated for myself at all like I normally would, and this wouldn't be the last time either when dealing with my concussion, unfortunately. 

To say that I have been completely confused and scared, unlike myself in so many ways, is an understatement. A friend told me to not look at any screens and to follow up with my PCP. I told her about it and asked about any precautions/restrictions I needed to take. The only thing I was told was to limit screens. 

The night of my fall, my entire body hurt - every single joint and major muscle group was flared. I hurt almost as badly as did following my gallbladder removal surgery when my nerve pain kept me bedbound for 4 months except for the time I went to work. Four days later and looking at screens still triggered or increased my headaches. Since my injury occurred while at work, I was followed by worker's comp and bound to their rules and recommendations. With my symptoms no better after the 4 days the ER doctor wrote for me to be off work, I was directed to 3-4 different nurse practitioners to manage my care at an urgent care contracted with my worker's comp. I wasn't assigned to one nurse practitioner, so I never knew who was going to be the one to manage my care that week when I would return for each follow up visit. The time I was allowed and restricted from screens changed every week. But by my 2nd visit back, there was concern about my knee that I twisted in my fall and was referred to physical therapy. There the physical therapist told me I likely had an injury to my outer meniscus and was allotted 6 sessions of physical therapy to strengthen it as it healed. 

In the meantime, I was still experiencing headaches, memory loss, loud noises bothering me, excessive crying at sometimes nothing at all and other times if I was overwhelmed in the slightest, misreading signals so I thought everyone was mad at me with absolutely no evidence, numbness, difficulty concentrating and forming sentences when my headaches were really bad. I differentiate between how noises bother me - usually when a noise bothers someone it hurts their ears but for me, noise hurts my brain. One day, I had the worst headache I've ever had in my entire life. My entire head hurt immensely and every few seconds it felt as though I was being forcefully struck on the top of my head repeatedly for about an hour. It took Tylenol 45 minutes to start to lessen the pain. I struggled with my short-term memory for a long time, and it was very upsetting to me. I couldn't remember things like where I had found a coffee I liked. One week, I bought a to-go drink from somewhere that I sipped on for several days. By the end of the week, I looked at this generic cup and realized I had no recollection of where I had obtained this cup from. While most of the things I couldn't remember weren't significant it was the mere fact that I couldn't remember that was extremely upsetting and would lead to crying spells.

There were so many days that I was completely convinced that Mike was ending our life partnership with absolutely no reason to think this. The most frustrating thing? I wasn't even feeling depressed and yet I was more emotional and crying more frequently than I think I usually do when I am depressed feeling. It literally was as though I suddenly lost all of my coping skills. I could only handle feeling overwhelmed, overstimulated, stressed for about 5 minutes max before I would break down into tears - and sometimes I couldn't stop crying for 2 hours or more. My neurologist told me that I needed to address this in my mental health counseling or as my brain heals from the injury "it will get stuck like that". Great, like that didn't add even more stress to me during this. My counseling had to be placed on hold though as my cognitive behavioral therapy was virtual so there were times I couldn't be on the computer, and it was unsafe to undergo EMDR therapy due to risk of seizure with a concussion. 

After a few weeks, with symptoms not improving and probably only because I had a crying spell with one of the nurse practitioners, a brain MRI was ordered but didn't show any explanation for my continued symptoms and then after a couple more weeks, I was finally referred to a neurologist. The majority of this process I felt completely confused, no idea what to expect, no idea if what I was experiencing was normal, and feeling terrified this would be how I'd be for the rest of my life. So, to finally be allowed to see a neurologist was a large relief...except though of course, my anxiety of providers I'm not familiar with and my fear of being dismissed and overlooked, misunderstood as a rare disease and medically complex patient. 

The earliest availability with the neurologist I was referred to was mid-July. My case manager and adjuster both agreed this was too long of a wait for me to be seen by a neurologist and asked if my neurologist would accept worker's comp and see me instead. My neurologist, a saint of a man, agreed as a favor to me because he knows me well and is aware of my mistrust and fear of new providers. 

With all the approvals in place, I was able to see my neurologist who advised my brain looked good and cautioned me to only use analgesics 2-3 times a week, not daily, as it could worsen my headaches. Instead, he wanted to focus on preventing my headaches and prescribed Topamax for me to try. It would take up to 6 weeks to become fully effective and has some bothersome side effects and so it's recommended to take it at night so that one sleeps through the side effects. This, of course, had to be approved by my worker's comp team before I could obtain the medication though. My neurologist also recommended that I discuss with my adjuster the logistics for me to have a reduced work schedule to allow time for my brain to heal. He told me that my brain hadn't been getting the time it needed to heal and jumping straight back into work and usual activities hinders the healing process following a concussion. Additionally, he advised me that my difficulty to remember words, using word salad, saying phrases backwards and even repeatedly saying the same thing over and over were all a signal that my brain was needing a break, it was working too hard. 

I indeed did experience side effects from the Topamax - namely numbness. Both of my arms became numb, and it was bothersome, but I was willing to withstand it if it would help my brain. However, by the 3rd night on the Topamax my legs became numb and were hurting. I could barely sleep that night from neuropathy like symptoms in my legs. I thought perhaps taking a hot shower would help my legs feel better. That was the wrong move though as I nearly fell more than once in the shower due to the severity of numbness in my legs and I couldn't feel how hot the water was, so when I got out of the shower my body looked like it had a severe sun burn. I called my neurologist that morning who immediately switched me to Candesartan. Migraine prevention is one of the off-label uses of Candesartan as it is actually a high blood pressure medication. Again, he instructed for me to take Candesartan at bedtime in case it made me drowsy, and it would take a while for it to build in my system. He also advised he wouldn't want to test if I no longer needed the Candesartan for at least 6 months and possibly not until a year. I also required worker's comp approval to try this medication and then again, each month to obtain a refill.

Let me tell you, I am in love with Candesartan. It is an old medication, and I don't have any negative side effects. It doesn't make me drowsy but if I take it at the right time, it allows me to actually sleep well throughout the night. I have never slept as well, especially continuously, as I do with the Candesartan. It doesn't leave me feeling groggy the next day either like all other sleep aids/medications do. And of course, the very best thing about it is it does help reduce my symptoms to a tolerable level. I have not recovered to how I was prior to my fall and am not anticipated to return to that baseline either. I did require my dose to be increased as one missed dose caused a several day flare of my symptoms and one missed dose shouldn't lead to such a long recovery. 

Loud noises, overstimulation, and the decreased frustration/stress tolerance levels have been extremely difficult to navigate as they feed off one another and would then trigger a Migraine headache. Loud noises start to overstimulate my brain, as I become more stimulated the less I can tolerate and the more emotional I become the more likely I am to cry and every one of these things trigger headaches for me. There are also times that the slightest noise is too much for me and I need complete silence. I have been unable to find headphones that cut out 100% of noise but I do have noise cancelling ear buds and headphones that Mike got me to help reduce this cycle. There are times that I require using both my earbuds and headphones simultaneously as the noise is too bothersome with just one. Certain sounds and frequencies are at times more bothersome than others and at times they're not, there is no 100% consistent predictability to what will trigger my Migraine headaches. To make it worse, when I can't escape noise, it has triggered a form of anxiety in my brain that has at its worst required me to use all my strength to not smash my head into something to try to make my brain stop hurting. There have been plenty of days that I come home from work, and I message Mike "I'm lying down, leave me alone until I get out of bed" and he knows that means my brain is requiring complete silence and darkness to recover to a functioning level again.

In the midst of all these events transpiring, I was crying at nearly every turn due to my anxiety and fears coupled with my loss of coping skills since my fall. Once I was able to resume counseling, my counselors started working on identifying the root cause of my emotional distress and loss of coping skills. And we came to the conclusion that while a symptom of PCS is a lower tolerance level for stress and frustration and increased emotionality, trauma was also contributing to my increased emotional state. It was as though I had been transported back in time to when I was 9 starting with my first surgery. As a 9-year-old, I didn't have any coping skills, everything was new, confusing, and scary. Which was exactly how I'd been feeling. I didn't have any providers I trusted then or in the beginning of my concussion. It'd been a week-by-week trial and error for me and Mike trying to fine tune the best things for me and him to do to help me. And it's during this that I realized I need Mike and I truly don't know how I would be navigating all of this emotionally without him. Perhaps that's why I was convinced he was leaving me even. I was letting him closer to me than I ever had before, something that is scary to me, something against the vow I made to myself following my divorce. It was all too much at once and I felt vulnerable on all fronts. 

Mike's been really great though throughout. He makes every effort to answer my calls or call me back as soon as he can because he knows that I'm calling because I'm spiraling, and I need him to help walk me through it into calmness. He pays attention to all the random, useless information I tell him so that when I forget something, he can help remind me and prevent a spiraling episode. When we're in person and I start to spiral, he physically makes me stop and just breathe with him. And it was working! Slowly, over time I've required less time to calm even by myself and lengthened my tolerance level for stress, frustration, and overstimulation. Over a year later and all my symptoms are still not at the level I had pre-PCS but it's much closer at least and much more tolerable. Sometimes I'm able to go almost two weeks without crying from my decreased stress or frustration tolerance level and increased emotionality. I no longer feel insecure about my relationships with others, and I can tolerate loud noises for longer periods before requiring noise cancelling headphones. 

Once my symptom improvement maintained but I was no longer seeing improvements, my neurologist and I agreed that I had achieved maximum medical improvement and not anticipated to ever return to my baseline. My worker's comp then scheduled an Independent Medical Exam by another neurologist at my 1-year mark of my injury to determine if I still required the Candesartan. 

I finally received the notice that my worker's comp case was being closed as the independent neurologist found that I have achieved maximum medical improvement and my medication and any other future claims related to my injury would no longer be covered under worker's comp. Simply put, my PCS won't get better and even though I have only improved as well as I have because I am taking Candesartan, worker's comp has cut me off and doesn't find that Candesartan is needed to maintain that improvement. However, I expected their ruling and while it does suck to have to pay for my medication for the rest of my life it also means that I don't have to jump through any of the hoops that's required by worker's comp to obtain the continued care I need for my PCS. 

I hope I never have another fall again. I am particularly careful now when walking as my brain can't handle continued injuries. This is my second fall as an adult with a head injury that caused a new life-long condition. 

If you or someone you know receives a head injury, I implore you to take it seriously. Concussions are no joke. Seek out the care of a neurologist for monitoring and possible treatment options. 

How We Can Use Hardship to Build Our Resiliency

Most of us are aware of the popular saying that “what doesn’t kill you makes you stronger”, which was shortened from the original saying penned by philosopher Friedrich Nietzsche. Nietzsche, who is a fascinating philosopher to study, argued that while life’s suffering provides an opportunity for growth and building strength, the ability to build strength from suffering comes from existing strength within someone. This is a view that has been told and retold throughout written history before and after Nietzsche.

This all aligns perfectly with a renewed outlook on the saying “what doesn’t kill you makes you stronger”. Perhaps you have seen this new perspective tweeted by @rkkaay that has been shared around the internet:  

“Your trauma made you stronger. No, my trauma made me traumatized, it made me weak, gave me sleepless nights and memory loss, it gave me feelings I’ve never wanted. I made myself stronger, by dragging myself out of a dark place and dealing with consequences that weren’t my fault”.  

I absolutely love both perspectives of how hardship and trauma provide an opportunity for building strength. It is ultimately, within us where the true strength lies and is activated by trauma. The trauma is merely a trigger signaling to us to build from the trauma experience. By viewing life's hardships in this manner, the power is restored to the individual. It is not the trauma that holds power over us, it is we who holds power over the trauma. This is an incredibly vital understanding for processing trauma, particularly if the trauma has led to Post-Traumatic Stress Disorder (PTSD).

As a rare disease patient whose medical experiences led to the development of medical PTSD, I realize firsthand how powerless and helpless PTSD can leave one feeling, especially when combined with depression. It can become completely crippling to one's efforts to participate in normal daily functioning.

Not only can recognizing that the ability to grow and build from trauma lies within oneself instead of externally be life-changing by itself but also identifying and acknowledging where the growth shows itself in one's life as well. When we build from our inner strength through hardships, there are common perspectives or understandings that many of us adopt or learn. These new understandings are quite powerful in themselves as well.

Empathy Not Sympathy

It can be difficult at times to empathize with others and their experiences when we don't have any experiences to help us relate to another's. Many confuse empathy with sympathy; however, they are drastically different. Sympathy is a feeling of pity for another and their experience, it stems from a desire for us to not have the same bothersome experience of someone else's with a motive to not feel the discomfort that thinking of another's experience triggers within us. Whereas empathy is compassion for another's hardship with relation and understanding of their experience without any underlying motive about our own feelings but rather a focus on their feelings. When we experience a trauma, it broadens the realm of life experiences we encounter and by doing so, it allows us to build our empathy for others and their hardships. While one hardship may not be exactly the same to another person's hardship, our ability to relate progresses and based off our experiences we can find compassion for that of another's even when they are on the surface very different. When we relate to one another on a deeper level, we can provide and receive support from one another - strengthening our social connections. And strong social support in turn increases our resiliency to hardship.

Community Building

This is why community is so important for one's well-being. Often times, especially for men, the notion of being completely independent to the point of not allowing any help or support from another person whether it's physical, emotional, mental, or financial becomes romanticized and striven for by many. However, in reality, such extreme independence can negatively affect one's mental health as it leaves one vulnerable to feelings of shame, guilt, worthlessness when support is required. When these conflicting beliefs and feelings are not resolved, the dissonance can lead to new hardships created by a maladaptive attempt to stop the contention resulting in chemical dependency or substance abuse, for example. We see this struggle between what one believes they should be as a hyper independent person and the reality of requiring some type of support most often among men and individuals in careers that emit or require a presentation of unusual strength physically and mentally, for example military and law enforcement. These are also fields that provide unique experiences that the general population is not subjected to in most cases. For these reasons, community building of those with similar experiences becomes even more crucial and when psychological conditions and maladaptive behaviors occur that require a higher level of intervention and such communities can be very helpful.

I've experienced the need for such a specific type of community in my own medical experiences as a child and teenager with an ostomy and as a rare disease patient. Attending The Youth Rally and UOAA conferences were life changing in their own rights for me as an ostomate - I was able to meet and develop lifelong friendships with others of my own age who also had ostomies. And through the online rare disease community, I finally found the connections I so desperately needed as a child who didn't know anyone else outside of my family with my rare diseases.

I learned over the last two years in my metaphysical classes that receptivity to the support of another is not just about us receiving from one another, but it is also about the other person who is wanting to give. By receiving their support, we are giving them that opportunity to give, to grow themselves, to increase our social bonds to one another. As a giver, it can be difficult to receive from others and I try to remember this now when someone is wanting to give to me.

Self-Care

As I finally learned self-care in 2022 and after many trial and error attempts, I've learned how to also maintain self-care now, I have a new appreciation and understanding of self-care. Self-care is difficult to learn or achieve when we are in a survival mode but eventually, our minds and bodies will force us to learn self-care if we want to improve our mental and physical health. This is another difficult task for a giver which can be bred through hardship as well. My own medical trauma led me to want to give to others to help them through theirs and so I often gave more of myself than I had to give and once I stopped living in survival mode, my mind and body let me know it was time to learn self-care. Part of self-care is managing our energy and health needs to protect ourselves from burning out or causing more harm to ourselves. Like any habit we want to create, we can start small and build upon that starting point. We won't learn self-care in one fell swoop, it's a learning process just like the rest of life.

Building Appreciation

A common negative thought pattern that we all practice at times is discounting the positive and focusing on the negative. We do this also when we practice all or nothing thinking, black and white thinking. Both of these cognitive distortions make it difficult to appreciate the good, the positive in experiences and in life in general. An attribute of resiliency is the ability to practice appreciation and gratitude. Some days this may be harder than others but at the end of the day, being able to step back and find something to be grateful for even on the hardest of days can make the difference in reducing the hold of depression. This is not to say that positive thinking or gratitude are a cure all for depression, but they are healthy coping mechanisms that can be employed during hardships to help us decrease the mental toll of a difficult time. When experiencing a chronic hardship, such as with chronic illness, a person has two paths they can choose to take - either it can become so difficult to appreciate the good moments because one is so bogged down by the fear of the next let down OR the good moments can be savored and reflected upon with fondness and deep appreciation. Personally, I find great joy in relishing the good moments, savoring them and appreciating them in all their glory. When we have chronic pain and we do an activity without resulting in a pain flare, that's something to appreciate. When our doctor's appointment or test results are good or better than we anticipated, that's something to appreciate. When we remembered all of our medications without missing any of them, that's something to appreciate. The beauty of appreciation is that appreciation doesn't have to be for something huge - it can be for literally anything. And when we find moments of gratitude, we are building up our inner strength.

Gaining New Perspectives

As we develop each of the previously discussed skills and healthy coping mechanisms, we can begin to gain a new perspective, a wider perspective. When we feel pinned down by a difficult time, our view of the situation at hand can quickly become hyper focused and narrowed creating tunnel vision. Negative thought patterns will arise during tunnel vision as well and depending on the narrowed view we are taking, we may become overwhelmed by feelings of hopelessness, stress, defeat, fear, anxiety, etc. When we notice such moments, it is important to engage in behaviors to help widen our view once again and looking at the situation from a different viewpoint. In the midst of a crisis, or what even feels like a crisis, this can be challenging. Taking a moment to pause, to avoid rumination, regroup with the larger picture in mind and consulting with others are all small steps that can drastically change one's view on a difficult situation. For example, when my last surgeon said that there wasn't anything else for him to do about my chronic, debilitating pain that developed 2.5 weeks after my gallbladder removal, I was overcome with a brief period of depression and utter devastation. After I cried my heart out for hours and probably took a nap from exhaustion, I awoke with a new perspective on my pain and was able to devise a new plan of action for finding out what was causing my pain and for any possible effective treatments. It was with this wider view of the big picture that I was able to draw upon my inner strength to carry me through the next 6.5 months that it would take to obtain a diagnosis and effective treatment plan.

I struggle with catastrophizing potential future events, fixating on the worst-case scenario I can possibly imagine. This is a cognitive distortion that I continue to work on in my EMDR therapy and stems from my medical PTSD. I am becoming better equipped to identify when I am catastrophizing potential future events and exploring a new perspective of moderation, reducing my all or nothing thinking in regard to my fears. The more that I am able to practice this, the more I am gaining a new perspective on life, my future, and how I can cope in healthier ways.

Ultimately, we get to choose how we are going to respond to hardships in life. Responding and reacting are two different things. Reaction is that knee jerk reaction without any thought involved, however, responding is when we take the time to decide how we want to respond instead of automatically going with our initial gut reflex. Learning how to respond is part of healing and building upon the strength within ourselves that can be shown to us through difficult times. For even appreciation can be given to a hardship for the opportunity it provides to grow, for revealing what may not have been visible to us previously. Until that time, when facing a difficult moment and awaiting to come out on the other side of it, we can engage in daily practices to keep us above water while we are navigating those periods. 

Learning Balance

I spent 2022 learning self-care after realizing I never actually given myself self-care before. I think this maybe actually could even be considered as fawning, a trauma response. I have dedicated my life to the service of others, focusing on their mental well-being and empowering them to navigate and succeed in their own chronic illnesses. I was so focused on how to help others, professionally and personally, for the last 13 years that I never stopped to think about what I need. Prior to entering the work force, my life focused on my sheer survival since the age of 9. There wasn't time to think about self-care, my body was just trying to live to the next day and my mind was just trying not to break in the process. 

Now that I've learned self-care, I find myself experiencing great moments. But they're so great that I forget to maintain self-care resulting in a backslide. And not just a mental or emotional backslide, but also a physical one. My physical health and mental health are so closely intertwined that if I don't feel decently, tolerably well physically, my mental health plummets. It may only last a day, or it may last weeks to months. It took most of 2022 for me to finally identify the cycle and its root cause. I feel decent physically and am content emotionally, I overindulge in activity and stop focusing on self-care, I start to have increased physical symptoms, I start to get depressed and then they feed off one another. It isn't until I decrease my activity and heavily focus on my self-care again that I'm able to start to stabilize once again. And then the cycle continues.

I identified the cycle and its source early in December 2022 and then stayed in a frozen state for a few weeks, terrified to resume activity because I don't yet know how to balance my self-care and my activity without spiraling again. And so, I was left being frozen with fear and feeling overwhelmed. When trying to stop a spiral, I don't do anything beyond working as regular and I only engage in a small activity once during the weekend. There's so much that I want to do, so much that I enjoy but something must give, must change. I knew I needed to evaluate and prioritize my activities to identify a working plan to maintain self-care and prevent continued cycling. The difficulty lied in finally sitting down to do just that. 

With the continued encouragement from my counselors for a couple weeks, I finally allowed time for reflection and evaluation. I decided to maintain self-care I will:

• Stop trying to do so much because it is wearing myself thin. 
• Weekend activities will be limited to either a) one full day of activity or b) at most, 1/2 day of activity either on one weekend day or both weekend days. The rest of the weekend time I will dedicate to either resting or my rare disease advocacy depending on what I feel able to do at the time.
• I will no longer push myself to rare disease advocacy on weeknights and will only engage in advocacy efforts during these times if I feel up to it. 
• I will take at least one day off work every month for myself, even if it is only spent resting at home.
• I will continue EMDR therapy on a weekly basis and adjust my CBT counseling sessions as needed.
• I will increase my antidepressant medication when needed (This was approved by my PCP)

This plan, I believe, will help take some of the pressure that I place on myself to engage in activities/advocacy efforts on a near constant basis and instead, allow me to benefit from recovery periods for longevity. And as much as I want to do things when I'm feeling well enough to instead of setting limits on myself, I'm going to have to respect these new boundaries for my well-being. I'm going to have to accept that I won't be able to complete as many things as I normally have the past. I'm going to have to learn to stop pushing myself past my limits and to stop judging myself for not accomplishing as much as I would like in a given period. This part of self-care though - setting and respecting boundaries, being kinder and more allowing with oneself. 

As you may have noticed, I haven't been creating a lot of new content - whether articles or Youtube videos. These are both things that I will continue to do and want to do. However, the schedule will likely be sparser than what it typically has been in the past. 

I will continue to post nearly daily on LAP Facebook, regularly on Instagram and Tiktok as well. 

I'm also remaining active in the FAP Facebook Groups and One Cancer Place and completing guest articles and podcast interviews when able. I would like to start regular Twitch streams but have not yet done so. 

So, while I may appear less visible in some ways, I have no intention to stop LAP or any of my other rare disease advocacy efforts. I'm just learning how to balance it all. I will remain here and available. Our FAP and Short Bowel Syndrome communities mean the world to me. And I have big things planned for this year as ways of fundraising for the NORD FAP Research Fund so that we may finally fully fund it!

If you're struggling with balance as well, I encourage you to take a well-deserved moment to give yourself the time you deserve for self-care so that you may achieve a greater balance. 

Keeping it Simple

A few years ago I underwent an intensive transformative time as I was separating from the love of my life and in the midst of this heart wrenching, soul destroying period I was also losing others in my life I hadn't expected.


It was at this time that I wrote the following revelations in Let the Fire Burn :

"No longer care what others think of you. When you lose respect for someone, that person's opinion no longer means anything anyway. Don't waste yourself on those who have already lost your respect. Cherish those who are true to you - those who are supportive, loving, caring, and there with you through the brightest and darkest times of your life - not those who try to create dark times, tear you down, harm you with their malicious intent and manipulations, leave you without explanation. Don't let yourself succumb to the power of others, especially when it is a harmful power. You don't have time for that nor should you.

Don't take the dangerous, personal issues of others on as your own. People will attempt and succeed at betraying, manipulating, deceiving, and harming you. The reasons for others to inflict such pain on another is deep seated within them. Stop trying to decipher the reasons behind their actions. Their reasons don't need to make sense. Their reasons are just that, theirs. Not yours. Do not take on more pain simply because another is engaging in harmful behavior towards you."

That year I learned a multitude of lessons, none of which were easy. Not only was I having to cut ties with others of my choosing but I also had others choose to cut their ties with me. I felt abandoned and betrayed by those I held close for so many years, individuals who I had bared my soul to. It had all been in vain. It didn't matter how much I had cherished individuals in my life, nothing could stop what was being set in motion.


And so while in my own depths of depression, I had to learn to let go. Letting go didn't come easy to me but at some point that changed. Instead of holding onto feelings of abandonment and betrayal, I focused on the freedom from drama. My life was chaotic enough as it was, I certainly didn't need added drama. I stepped away and allowed others to do the same and when I accepted that I was able to let go of the stress caused by others.

Nowadays I keep my circle tight. Outside of work, there are few who I deeply engage myself with. It's not anything against others, it's a matter of simplification. With fewer people, there is less stress and mess. Those I remain close to also accept that I may not talk or visit them for long stretches of time. We both know though that the other is just a call away if one of us is needed for anything. We don't take things personally with each other and we don't create drama for the other. These are deep, meaningful yet simple friendships that sustain us. These are the type of friendships I not only want but also need.

It's okay to take a step away from someone or something. Sometimes it is necessary for our mental health. Learning to step away has taught me not to take the actions of others personally even if it was meant to be personal. It no longer matters. What does matter is self care and happiness. These are things that are within our own hands and others cannot take it away from us without our permission. I stopped giving my power over to others and I've never looked back.

Dialectical Behavioral Therapy for Chronic Pain

This is a guest post by Danielle Faith

In Pain at 4 am

I've just woken up. It is 4 o'clock in the morning and I am in extreme pain. I'm doubled over and unable to move. My goosebumps have goosebumps and I'm ready to pass out or vomit from the extreme pain. I know I have to go to the ER and it's causing a ton of stress.

I have asked myself countless times what if there was a way to avoid a panic attack? What if I could handle the stress better? What can help me? Could it help me avoid the Emergency Room? Can I make my situation more comfortable?

Does this sound familiar to you? Have you ever asked yourself these questions or wished you could manage stress better? What if I told you, you can make things better? It is moments like these where Dialectical Behavioral Therapy (DBT) can help lower your stress and anxiety, allowing you to make clear headed decisions about how to handle your health and can even reduce pain. This is because pain and stress can be intertwined. When you're stressed, you are in more pain and more pain equates to more stress. DBT helps break this cycle and gives you a chance at de-escalating the situation.

What is DBT?

Dialectical Behavioral Therapy (DBT) is a behavioral treatment method originally created by Marsha Linehan to treat a wide range of psychological disorders such as depression, borderline personality disorder, and suicidal idealizations. Over time, it has been proven that DBT is also effective in helping patients handle chronic illness as well and has been used to lower anxiety in chronic pain patients. DBT focuses on a set of four behavioral skills:

1. Distress Tolerance Skills
2. Interpersonal Effectiveness
3. Emotion Regulation
4. Mindfulness

Distress Tolerance

Distress Tolerance Skills are used when the situation cannot be changed. Each skill offers difference insight and it is important to use the right skill at the right time for maximum success. These skills are designed to help you cope and survive during crisis and can be applied to both short term or long term emotional and physical pain.

   Personal Example of Distress Tolerance

Radical acceptance is one of a few distress tolerance skills a person can learn. It is all about recognizing what you can and cannot control. For instance, at one point during the course of my illness I had to live with a feeding tube. Having that tube in my body was the strangest thing. I hated it. However, as time went on I began to accept it for what it was in the moment. That didn't mean I liked the situation.

I actually disliked it quite a bit. But having radical acceptance about it allowed me to relax and recognize that this is just how things are right now. It isn't forever. Figuring this skill out made me feel so much better about my illness. Plus, I was right, the tube wasn't forever, because I had it removed last year and have been much better since.

Interpersonal Effectiveness

Interpersonal Effectiveness skills apply to the skills that help us attend to our relationships. It is about balancing priorities and demands. It is about balancing the 'shoulds' and 'wants' to build a sense of mastery. These skills help identify what we need to do in order to get the results we want out of an interaction while maintaining a sense of self-respect.

  Personal Example of Interpersonal Effectiveness

Many times I've ended up in the ER and have had to use a specific format of talking to get the care I needed at the ER. The skill I'd use is known as "DEARMAN":

Describe: the situation, "Doctor, I've been vomiting all night and am in a lot of upper right abdominal pain."

Express: your concerns, "I'm very stressed out. I think I'm having a pancreatitis flare."

Assert: yourself by acknowledging what you need, "usually Benadryl, Zofran, lot of fluids and pain medication help the situation. I may also need an admit depending on my blood work."

Reward: the person and tell them what they get out of the situation, "I really need your help to make me feel better, that's what doctors do best!"

Mindful: of what is happening and/or repeating your needs, "So, when you put the medication orders in don't forget to include the Benadryl; that's important or I'll itch from the pain medication."

Appear: effective and nice, "I understand what you mean doctor. I am, however, in a lot of pain."

Negotiate: alternative solutions, "I'm willing to try an anti-inflammatory first. But if that doesn't work, can we make sure there's pain medication ordered as well? Thanks!"

Emotion Regulation

Emotion Regulation is the ability to respond to a variety of scenarios in a manner that is socially acceptable yet flexible enough to allow for genuine reactions. Being able to control how you react to a situation is essential when it comes to managing how you might be impacted by a situation.

  Personal Example of Emotion Regulation

One day I was feeling sad about my chronic illness. I was telling myself I looked fat and was lazy. I felt really bad about it too. I really just wanted to check out and take a nap. That's until I went ahead and changed my thoughts which influenced my feelings and behavior. Instead of telling myself something negative, I went for something more positive. Instead of saying I was fat and lazy, I told myself I was chronically ill and doing my best. That made me feel a bit better and I felt a lot of empathy for myself; then I was able to get up out of bed and start the day.

Mindfulness

Mindfulness applies to distress tolerance, emotion regulation, and interpersonal effectiveness skills through observation. By observing what is going on around you, this allows you to fully engage yourself in the experience without labeling it as good, bad, or anything in between. The benefit of mindfulness is that it quiets your mind and gives you a way to acknowledge all your thoughts and feelings.

  Personal Example of Mindfulness

I was really stressed out about being sick and having a feeding tube that I just broke down. I started to cry with no judgment. Before I knew it, all the stress I hold in my neck, shoulders, and back evaporated. It was like magic. Suddenly, as I noticed the lack of pain in my body, I stopped crying in awe. For two days I noticed every little thing about not carrying that weight on my back and ended up having a really great two days.

DBT for Chronic Pain

As you can see, DBT brings a lot of hope to chronic pain sufferers. This is because chronic pain and anxiety go hand in hand. Treating anxiety is one easy way to lower the intensity of a person's pain. While it may not fix the root cause of pain, it can allow a person the freedom to make intellectual decisions about their care that isn't influenced by anxiety or fear. This alone can unlock doors for those with painful conditions. 

Anxiously Awaiting

The last year has been a monsoon of emotions and personal events that included a long bout of depression from increased health issues, the death of a beloved great uncle, and the emotional loss of individuals I once deeply cherished. With the ups and downs of the last year, I embarked upon a path of self discovery and self transformation. I am finding peace within myself and loving every moment of it. However, patience is by far not my strong suit.

There is a great number of things I want to accomplish this new year yet I'm constrained by time. Time inhibits my ability to complete my actions, my goals as quickly as I'd prefer. I must wait for the right time or for the process to be completed for each personal goal. I'm left anxiously awaiting the passage of time as I fervently work toward creating the life I want.

There are times when my eagerness surmounts in an exhausting, terrifying ball of anxiety. It catches in my throat, words can barely be uttered. Tears well up in my eyes, desperate to escape. My chest tightens, constricting upon itself as my mind races trying to calm itself. I repeat my self soothing mantras, frantically reminding myself that it is only anxiety...I'm not having a heart attack. Although it feels like it.

It's easy for us to get ahead of ourselves when we are so intent, so earnest for the arrival of what we want. It doesn't matter what it is, we tend to want what we want when we want it. It's hard not to jump ahead and just have what we want. We think if only we could fast forward time! The world doesn't work this way though. We need to wait for others, we need to allow time for the process, or we need to move forward in a systematic way - achieving one step at a time. But really what we need is to simply learn patience and enjoy the journey. The journey is what fulfills us after all. The ability to look back and realize I did this, I accomplished this, this was me!

Learning patience isn't easy. As a highly impatient person, I feel as though my strides in learning patience are minuscule even though I notice a difference in how far I've come in the process.

When the anxiety of impatience has a stronghold upon me, I have to remember a lot.

• I remember it's merely anxiety. If I want to calm myself, this is the vital first step. Until I understand it's just anxiety, my mind will keep racing and heaving more anxiety upon me. Self talk and breathing are essential in calming my anxiety provoked fears.
• I remember what I'm doing to achieve my goals and what I still need to do. I map it out. Where I've been, where I'm going.
• I remember my plans for reaching the next steps in my plans. Without steps lined out, I'm simply waiting without direction.
• I remember I'm doing everything I possibly can. Some things are out of my control but I'm doing what is within my control. I'm not passively sitting and waiting. I'm taking action.
• I remember it isn't always the right timing. I won't be able to obtain solutions until I can gain more answers. Answers that are only available when the timing is ripe.

The next time the anxiety of waiting hits, remember where you are, where you've been, and where you're going. This helps to keep the small details in perspective to the larger picture at hand. Although the journey of patience can be infuriatingly frustrating and difficult at times, in the end it is far worth allowing the process to take its course. We gain great insight, wisdom, and skills when we push the anxiety aside and continue on our path.

Travel Stress

I thoroughly enjoy traveling, learning about the local culture and exploring the sights. I long to travel the world, whether it be state, country, or continents and I have my own travel bucket list I'm completing. Yet the tolls of travel are becoming more evident over the years.  Driving 1200 miles over the course of two days was once tiresome but manageable. Now I plead for 3 days travel to reduce travel stress. Traveling 3 hours via vehicle to arrive at a destination for a single night has become an event I dread as I'm left requiring a day of recovery to feel rested again from such a relatively short distance.

My parents and I traveled to visit my great uncles and tend to the beginning of the last days of my eldest great uncle. We decided to fly due to the stress upon us from our 1200 mile drive. Even with less than a 5 hour flight, the day was proving stressful enough. Our plane arrived at nearly midnight, our one checked baggage hadn't made it on our plane but was following behind us on the next flight. A flare up was starting from my lack of sleep and rest and sharp pains began stabbing at the back of my knee each time I took a step. We decided to hold out during the hour wait to obtain our luggage and then was tasked waiting for a rental car and determining if we would be able to check into our hotel a night early while correcting the hotel's error for multiple reservations. After all was said and done we entered our hotel room around 2:30 am to sleep 4 hours before heading to visit my great uncles. Needless to say, we were all exhausted and requiring rest before too long.

What's the best ways to combat travel stress?

Firstly, starting your trip rested and energized makes a difference. Completing necessary planning and preparations for your trip beforehand allows for a more organized, less stressful start to your day. We need this energy and let's face it, most of us are already struggling with energy levels so we don't need to start off further drained than usual.

Know how travel and food will affect you. I know I do better with reduced fluids and food intake during periods that provide limited restroom access. Struggling to avoid restroom necessity when I'm unable to access a restroom is physically and mentally hard on me as my body becomes sore and my anxiety and frustration levels increase. Correctly timing my fluid and food intake provides increased freedom when I need it most.

Schedule your travel to allow for departure and arrival times that are optimal for your well-being. Do you function better early or late in the day? When do you usually start to run out of steam? Allow time for rest breaks to regroup, stretch, and walk to prevent blood clots, achy joints, or lodging for sleep to prevent exhaustion and decreased immunity. Make arrangements ahead of time if you fare better with handicap accessibility or assistive devices. 

Eat healthy during your travel and stay at your destination. It's easier to fall into the fast food traps while traveling but your body and mind will thank you for avoiding such traps. Fast food and other unhealthy foods leave us feeling sluggish. 

Take your medications to help keep you on track. It's easy to skip or forgo medications when our typical routines are altered. Consider adding immunity boosting supplements to your medication regiment after discussing it with your doctor. Zinc and Vitamin C are great immunity boosters. 

Plan activities that fit your activity level. Jam packing your days with various activities can give you great memories but leave you exhausted, wanting a vacation from your travel and time away. Give yourself some relaxation opportunities. 

Travel is a wonderful privilege and we are able to enjoy our travel experiences to the fullest when we take care of ourselves. So get out there and see the world, it'll change you!

Travel changes you. As you move through this life and this world you change things slightly, you leave marks behind, however small. And in return, life and travel leaves marks on you. Most of the time, those marks - on your body or on your heart - are beautiful. - Anthony Bourdain

Self Care

When we are presented with moments and events of extreme emotional distress and overwhelming stress, we place ourselves and others around us in danger. Perhaps it is not a life threatening or immediate danger but the stress carries over from ourselves to others as it able to affect those we encounter. Stress quickly and easily will take its toll on our bodies, our minds, and our relationships.  It becomes a poison seeping through ourselves into the air, tainting every aspect of our lives. Daily functioning is sacrificed, relationships are strained, and physical symptoms begin to appear.

Last week was a particularly difficult time for me as my mind was unable to control my emotional distress, no longer could I hold back tears and anger, the depression pushing for a release. I had difficulty focusing on my tasks and responsibilities at hand. I feared my emotions and the sense of losing control. My mind and body were becoming exhausted from the burden. My mind began to create minor issues for me to fixate on rather than the source of distress. My mind was frantically trying to protect itself from danger and no longer would I be able to forgo intense self care.

Self care is not always an easy task to submit ourselves to as we tend to make excuses and feel guilt or shame for requiring self care. Self care is necessary for every individual. It doesn't matter how we choose to provide ourselves the gift and necessity of self care as long as we provide ourselves with it. If we fail to do so, we risk greater damage to ourselves and those around us. Our minds cannot continue without self care, it will lead to a worsened state of mental and physical health.

My self care rituals vary depending on resources, the source of emotional distress, and options available. At times socialization is most valuable and others solitude is preferable. I reached out to friends for support and activity, which helped distract and process feelings but as the pressure continued to mount I knew I required solitude and peace to allow for self reflection and serenity.

I feel most serene when I am within nature, isolated from the busyness and distraction of others. I located a secluded rental within the countryside and planned out my weekend of solitude. As I entered the property my stress and outside concerns began to fade. I let the stillness of the land enter my spirit and draw out the heartache and depression through tears and reflection. I tended to my psyche as I socialized with the farm animals on the property, engaged my creative side with skull painting, and pampered myself with my own in home spa. I was saddened as I said goodbye to the horse I connected with so much during my stay and watched the land disappear in my rear view mirror as I left the gate and turned the corner down the country road. I didn't want to leave my oasis away from the world, away from reality. But my time away provided enhanced clarity and recovery of my soul, allowing me to re-enter the world with the ability to resume daily functioning without fear.

Self care needs vary among individuals and situations but finding what makes you happy, what distracts you and helps you gain closure or take steps closer to a resolution, is key. We can all spend time watching television and vegging out but this isn't truly self care. Self care is more than escaping the world. Self care is loving yourself and loving yourself enough to do what you need for your well being. Self care is a preventative measure against harm from the effects of stress and emotional upheaval. It is holistic in its approach encompassing the cognitive, emotional, physical, and social realms. You can find a list of ideas for replenishing your body, mind, and soul here. You deserve time to love and care for yourself. Never forget this.

A Deadly Duo

I lay on the cool, hard floor; resting my head upon my dog's shoulders, tears stream down my cheeks, and wrap my arms tightly around his neck. I cling to him for dear life as I contemplate my own life. I'm home alone and no one is due to come around for hours. Thoughts race through my mind consumed by depression.

I enter the kitchen and there he stands facing the window, his back to me. We stand in utter silence, not even able to hear the usual sounds a house tends to create. He makes no acknowledgement of my presence, perhaps he doesn't realize I'm standing behind him. My mind races in the mix of my depression and my anger.


We all have fleeting thoughts inspired by death, whether it's a mere moment of thinking "I'm done, just end it all" or brief anger inspired thoughts for harm to another as simple as "I'd like to hit your car with mine". These thoughts dissipate as quickly as they appear and in the flash of a moment they're forgotten as our mind shuffles around our thoughts, storing some, discarding others, entertaining a few. However, when our mind begins to fixate on such thoughts we know there is more going on within us. I recently shared my own battles - past and present - with depression and anger and the struggles of living with these friends.

Depression and anger are the perfect deadly duo. Depression isolates us from others and activity, burying us in pain and apathy, draining us of life. This is why there are precautionary statements for risk of suicide with antidepressants and as a warning sign for suicide...as our depression lessens, our energy increases and we suddenly have the energy to carry out that suicidal intent and plan we've been mentally preparing but previously didn't have the energy to complete. Anger on the other hand tends to be a mask for deeper anguish, it behaves as a coping mechanism...creating barriers between ourselves and others and within ourselves. With anger we always have an excuse to push others away and to not tackle our underlying issues. Anger gives us the peace of displacing attention from what is really bothering us onto other issues, typically minuscule and fleeting.

Depression and anger, that blissful pair, remind me of a quote from the character Dr. Sidney Freedman from the TV series M*A*S*H  when he states "Anger turned inwards is depression. Anger turned sideways is Hawkeye." Interestingly, Hawkeye combats the Korean War in his own rebellious, authority defying, snarky style and at the end it becomes too much for him to bear and he is institutionalized. No matter how hard we fight, how much we rebel against the atrocities of life we witness and experience, at some point we will find our breaking point if we don't take the necessary self care precautions to protect ourselves from harm - physical or mental.

There are moments in our lives that serve as an alarm, a distress signal. If we ignore this alarm, we may face detrimental long lasting effects. Our alarms will vary from person to person, some need very loud alarms and others require little prompting.

I have endured bouts of depression over the last 20 years and it is triggered periodically, particularly after traumatizing experiences. As college classes resumed after spring break vacation, I returned to school and although my body was present, my mind wasn't. Being around others, away from the safety of my home, and the stimulation of a busy environment overwhelmed my psyche as it attempted to recover itself from a traumatic experience the week before. I was unable to function at work or school until my mind could recoup from my recent trauma and address the issues at play affecting me. Had my professors and myself ignored the distress signals of depression, crying episodes, hyper vigilance, and severe anxiety my acute stress disorder could easily have progressed into post traumatic stress disorder with long lasting negative effects. Instead, we heeded those alarms and with assistance I obtained the professional care and help I needed to resume a functioning daily life.

My family and friends joke about my temper and the subsequent venting meltdowns that occur until my anger becomes smoldering rather than fiery. I have experienced extreme anger beginning after my first round of surgeries and complications. I was angry about my health, ostomy, and life changes. I developed post traumatic stress disorder and depression, I coped with these diagnoses through anger. I was surprised when a co-worker chased me down a hallway shaking a small bag of tortilla chips offering them to me as consolation and to calm my fiery temper down after a meltdown. Being chased with chips served as an alarm to me and I realized that I needed to work on my temper again.

When depression and anger combine forces, we are left fighting against ourselves and the world. Depression and anger work together in magnificent synchrony to isolate us through withdrawal and creation of barriers in an effort to destroy us from the inside out, feeding off of each other and our experiences of trauma, pain, and heartache. We begin to lose ourselves amidst the battlefield of depression and anger, we begin to say and act in ways that are not like us as we are pulled harder and fought over between this duo. This is a wake up call to pull back harder and break the grasp of depression and anger so that you may escape and return to yourself. If we don't, we are pulled closer and closer to death whether by our own hands, worsened health complicated by the depression, anger and stress that is evoked, or through risky situations we may place ourselves within due to reckless behavior. Breaking free is not easy but it is doable.

Your psyche wants to protect you, pay attention to the alarms. Take it a moment at a time, seek out counseling and reach out to friends and family. Also check out these other free support resources.

Stress and Chronic Illness

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Stress is a powerful energy that can help and harm us. Stress can serve to motivate us to take action and complete tasks but it also can place great pressure on our mind and body with negative consequences. Stress affects every part of our body and often triggers or exacerbates symptoms and diseases. Find a full description of the effects of stress on the body here.

With small amounts of stress, I notice the inconvenient, annoying symptoms of muscle tension, irritability, anxiety, and difficulty sleeping. However, when I have intense stress the symptoms worsen and in addition I experience increased degenerative joint pain, sadness, often have crying spells, and my SBS symptoms worsen. The combination of inadequate sleep and stress sends my SBS symptoms into hyper drive. I'm unable to tolerate foods, even liquids, and any movement becomes unbearable. Ingestion increases the amount of waste produced to be expelled at a rapid rate and movement further increases the frequency of those restroom trips. The ongoing barrage of this cycle results in pain and soreness that spreads to my entire body. Sitting and lying down are even difficult as my body struggles to slow down the SBS.
From the onset of this cycle, I know my stress is out of control and I'm walking a thin line; I need to check my stress immediately.

We all experience and manage stress differently. I'm very Type A Personality, I'm a planner and a problem solver. For me, I have to tackle the problem and find a resolution. However, once I've hit the boiling point the first thing I must do is cease ingestion and find time and space away from everything - work and activity - so that I may allow my body to begin to relax. Once I secure this, I can begin resolving the source of stress. Identifying and establishing a game plan is a must for me followed by expressing my feelings through verbal or written word and utilizing a sounding board.

There are many options available though to help manage day-to-day and chronic stress to protect our bodies and prevent reaching the boiling point. Consider the following in your own regiment for stress management:

• Stress Management Diet - food plays a vital role in our health and eating foods rich in vitamins and minerals that promote healthy brain chemicals can help lower stress hormones. Participating in cooking classes can provide an additional benefit for learning new ways to create healthy and tasty meals incorporating such ingredients. Cooking classes may even double as a stress relieving activity. Communities often have various cooking classes available, such as the one offered by Chef Alex Friedman Master Class.
• Meditations - the different types of meditations are endless. Yoga, Tai Chi, Pilates, and Qigong are great individual or group exercises that include meditation. Guided meditations are also incredibly useful and can be learned to be used on your own in any situation.
• Breathing - although breathing is used in meditation, there are different exercises for focused breathing that are very helpful.
• Sleep Well - getting adequate and restful sleep is a key factor to protecting one's physical and mental health. This can be quite challenging when we are feeling stressed or anxious.
• Activity - engaging in activities of enjoyment, socialization, relaxation, distraction, and exercise all serve to reduce anxiety and stress. Get back to a hobby or try a new one out, spend time with a loved one, pamper yourself with a massage, hot bath, skin detox, watching a sunset, music or books, and get some physical activity. 
• Support - we can't go about life on our own. We all need someone to lean on for support. Utilize that person(s), that's what friends and family are for - to help one another. Reach out and find more individuals to add to your support system.
• Take Time For You - everyone needs downtime to relax. Sometimes it's hard to make time for this, but it is important. This time allows for decompression and recharging - both needed for tackling the next task you have.