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. 

Comfytemp Weighted Heated Vest: AD - A Sponsored Review

 

Disclaimer: I have been given Comfytemp Heating Pad for Neck and Shoulder Pain Relief as part of a product review. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

Chronic pain is, unfortunately, not uncommon amongst those of us with chronic illness and with Familial Adenomatous Polyposis, we often have abdominal pain at the very least. However, part of my Abdominal Migraine is torso pain that extends to the top of my shoulders as well as neck pain due to degeneration in my cervical spine. It was with these thoughts that I looked forward to testing the 

Comfytemp Heating Pad for Neck and Shoulder Pain Relief.

This specific weighted heating pad by Comfytemp fits like a cropped jacket, zips in the front, and has adjustable straps for the sides and arms so that the vest is adjustable to fit sizes Small, Medium, and Large with the arms adjusting up to 16 inches and the chest adjusting up to 47 inches. There is heating in the neck, shoulders, arms, and full back and the heating pads of the vest in the shoulders and upper back are filled with micro-glass beads. This vest is electric; the electrical cord with control is detachable from the vest to allow for machine washing, although I did not test wash the vest.

I have never used a weighted blanket before and although weighted blankets have been shown to aid with anxiety reduction and other benefits, I have panic attacks when I feel confined by fabrics and when something is too near or too tight around my neck. For this reason, I don't believe I would like a weighted blanket as I have become anxious even when only using a heavy comforter. The first time I tried on this specific Comfytemp Heating Pad, straight out of its packaging, I experienced a panic attack upon fully zipping the vest as the collar was touching my neck too much for my comfort level. However, when I straightened out the vest while I regained my composure, I have been able tolerate the vest without experiencing anxiety since, even when napping with the vest on. 

Due to the attached electrical cord during use, it would not necessarily be easy to sleep for long periods while wearing the vest as the cord is attached to the left side of the vest. This would not necessarily be an issue for someone who does not move a lot in their sleep and is sleeping on the correct side to prevent from laying on the electrical cord. Lying on the cord does not impede the vest from functioning properly, however, I do not like to lie on cords when sleeping, I move a lot in my sleep, and I often require using the restroom during the night, sometimes urgently. When I wore the vest while napping, it was after a full day of work and my left shoulder blade was particularly hurting. I looked forward to wearing the vest in attempt to reduce my shoulder and back pain. While lying on my left side with the vest on, I adjusted the side straps to keep the vest's heated pads that are filled with micro-glass beads as close to my back as desired. I was able to fall asleep and when I awoke from my nap, my back and shoulder felt immensely better from the heat. I have worn the vest in this manner on more than one occasion for pain in the same shoulder/upper back area with similar results each time.

The vest has 9 levels for heat with a timer option that ranges from 30 minutes to 9 hours for automatically shutting off the heat. I tested all 9 heating levels and found that the vest heated rather quickly but was not a searing heat that would be considered painful even on bare skin. When reducing the heat level, it took a few minutes for my body to register the difference in temperature, but I was able to notice a difference as I increased and decreased the temperature through all 9 levels. 

What I don't like about the vest is the arm straps. I understand the reason for them to allow for a wide range of arm sizes to fit the vest arms and to secure them, but I found them cumbersome and awkward for putting on and off the vest - something my other family members who tested the vest also voiced. The Velcro straps felt uncomfortable if they weren't aligned properly to prevent touching the skin, I couldn't simply remove the vest as I had to unstrap the Velcro straps from one another and at times, I had difficulty putting on the vest because the Velcro straps were attached to different parts of the vest and kept reattaching before I could put the vest fully on. Instead, I would prefer a thin, soft, loose fabric on the underside of the arms of the vest to fit more naturally like an article of clothing.

My parents tested this vest as well. My mother often times is cold and thoroughly enjoyed wearing the vest. So much so, I believe my father is purchasing one for her. My parents both found it to be "fairly comfortable" and felt the warmth of the vest around their neck, upper chest and shoulders particularly. They found it a "bit confusing to put on initially" and reported "big gaps on the side when adjusted". My mother has chronic pain but was not experiencing any pain while testing the vest for a weekend. However, she stated she thought the vest would be helpful in reducing her pain had she been experiencing any pain in those areas of the body during her trial test. My father particularly thought the vest would be nice to wear if working a desk job or while lounging.

My partner, Mike, also tried the vest. He has chronic nerve pain in his neck that at times also radiates into his shoulders and upper back. Mike found the vest to be on the uncomfortable side as for him, he really needed a larger size. He was able to zip it up completely, although I was surprised by this. He said that it heated quickly, and the warmth felt nice. However, once he became too hot he did not want to turn the heat level down to allow the warmth to dissipate to a more comfortable level - he stated he was too hot to wait for that. His shoulders and back were not hurting when he tested the vest although I suspect the heat may have been helpful with pain there for him, had he been having any during his trial periods. He primarily has pain in the back of his neck and did not feel that the collar of the vest provided any pain relief for him. Part of this reason though was because the collar did not stay up against the back of his neck enough for the heat to be of any potential use. Mike said that he wished that the vest was battery operated so that he could wear it without being limited to one space and especially to be able to wear it outside. 

Oddly enough, I remember thinking several months ago about how I wished there was a heating pad product that was not just a regular heating pad but instead could stay close against my back and move with me in different body positions without having to readjust the heating pad placement. I did not think such a thing existed, it never even occurred to me to do a search for such a type of heating pad. But now I'm aware of such items available through Comfytemp and I am thoroughly impressed with the variety of heated items Comfytemp has available. Overall, I am very pleased with and would recommend the Comfytemp Heating Pad for Neck and Shoulder Pain Relief vest and will be wearing it regularly, in fact I am wearing it as I finish this review.

3 Self-Care Habits That Can Be Started Today

This Post Includes Sponsored Links

Self-care is one of the most important things we can do for ourselves and yet it is one of the most frequently neglected aspects by many of us. The practice of self-care is not just for mental health either, it is also for physical health as it's vital for helping to reduce health risks of stress, burn out, over working, sleep deprivation, poor diet and hydration and more. The beauty of self-care is that there is no right or wrong answer and there's a vast number of things that self-care practices can include, it's highly personalized for what works best for someone. There are, of course, a few main stays for overall well-being that are universal to meet our bodies basic needs that are often neglected as well. Below are 3 self-care habits that can aid in meeting 3 different levels of needs in Maslow's Hierarchy of Needs that he identified to be drivers for behavior and what makes us fulfilled.

A vital aspect of self-care that seems often difficult for many to achieve is adequate sleep. This is a basic need and is included the first level of physiological needs in the hierarchy. Without adequate sleep, the body and mind can become dangerously taxed to the point of serious illness. Developing good sleep hygiene is one of the best ways to improve one's sleep, particularly without resorting to medication. The CDC provides tips for improving sleep hygiene and provides information for connecting with the American Academy of Sleep Medication for more in-depth sleep education. 

Social needs are another need identified by Maslow on the 3rd level of love and belonging where connection and secure relationships with others is identified. Staying connected to others can be difficult when living with a chronic illness and far too frequently, depression in addition. With chronic illness, we often feel like a burden on others and don't want to ask for "even more" from our friends and family. However, this increases isolation, which in turn, increases risk for depression. With depression, the brain tells us not to do things, such as connecting with others, we have negative thoughts about our relationships with others and our needs, and depression is further reinforced. And so goes the cycle on repeat until something in the chain is broken. One way to help with breaking that behavior chain is to stay connected. Socialization has many additional benefits for physical health in addition beyond just mental health well-being and is easier to do now than it likely ever has been before with a variety of avenues thanks to technological advancements. 

Esteem needs are placed on the 4th level by Maslow where one earns esteem through self-worth, competence, independence, and dignity from within oneself and the respect or acknowledgement one desires from others. Achieving a true level of esteem, fully loving oneself in a healthy way, is not based upon physical appearance, possessions, or the opinions of others but rather how we value, love, and accept ourselves. How we view ourselves can affect our self-esteem and this can even be affected by the care we take in our personal appearance whether it's clothing, basic hygiene or more. When we engage in behaviors that help us feel like ourselves even when we may physically or emotionally not feel at our best, such behaviors can actually help to release dopamine and lift our moods. Unfortunately, chronic illness can negatively impact more than not feeling well physically or emotionally but also every aspect of the body, including causing damage to one's teeth. This has been a major concern I have with my esophageal dysmotility, especially when I was having chronic vomiting as not only does malnutrition impact teeth but so does vomiting. Being able to obtain dental guidance and treatments necessary to prevent or repair the damages of chronic illness is not necessarily easy though either due to expense affecting access to care. Similarly, to how there are vision centers that provide promotions and discounts, some dental centers do as well, such as this dentist in Florida. When I was married, before my then husband had dental insurance, we took advantage of similar promotions to at least be able to afford to obtain a cleaning and exam for him. Dental wise, there are also dental schools and free or low-income dental clinics that offer various dental services to aid with process of obtaining the dental care a person may require for good dental health. 

Whatever new for your self-care habit you're planning to start on, remember to specify realistic steps for achieving your goal and identify how you will know that you've achieved the steps and ultimately the goal of self-care. Doing so helps set us up for success when goal setting and part of self-care is also giving grace for setbacks so that we may stay motivated to continue our efforts. 

Changing Our Perspectives to Better Our Well-Being

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Living with chronic illness can easily lead to feeling like life has become mundane, perpetual routine of medical appointments, treatments, and feeling generally stuck in a rut. If we aren’t careful, we can spiral into depression that further negatively impacts our health and well-being.  

While we are not always able to change life's situations, we do still have control of our thoughts and actions which ultimately impacts our perspective on life and our well-being as well. Below are some ways to aid with just that – changing perspectives to better our well-being. 

Prioritize Self-Care 

I’ve previously shared about my own journey of learning what I needed for self-care and how to maintain it. I had been stuck in a survival mode for decades between my own physical and mental health – I didn’t have the chance to properly learn even what self-care meant or looked like. Self-care looks different for everyone – it truly is a highly personalized practice. At a self-connection retreat, I attended in 2022, I learned many different self-care rituals that I had never thought of before. I absolutely loved the retreat; it was refreshing to my worn-down spirit and gave me new ideas for how I can care for myself. When we are in the depths of chronic illness, we can so easily forget that at times the basic necessities for our well-being are truly just that – necessities. Eating healthy, exercise, and sleep are vital for our bodies and mind for the bare minimum of functioning. Without adequate, balanced nutrition and sleep, our bodies will struggle to function – we need adequate calories just for daily survival, proper nutrients to maintain our electrolyte balance, and sleep for our body to repair itself. Without these keys, our immunity lowers, and our chronic illnesses can worsen. Exercise, of any kind for any amount of time, aids physical and mental health as well. Chronic illness can make exercise difficult for many of us. However, some is always better than none. For some, stretching may be the best and most appropriate form of exercise while others are able to perform more rigorous exercise such as running. The key is to keep our bodies moving as without movement, our muscles atrophy and are less able to support our bodies and pain can worsen significantly. 

In the midst of surviving and managing all that comes with chronic illness, remember you are important and you deserve self-care.

Reconsidering Work Options

Not everyone with chronic illness is able to work and some may find it difficult to continue in their current career field. For example, I absolutely loved working hospice, however, my body is unable to tolerate the stress of traveling all day long, every workday. I need a job with minimal travel. I had to reconsider what I wanted to do and what my body could tolerate because of this.  

Sometimes though, when faced with chronic illness our passions and expertise change. That’s why I started my rare disease advocacy with Life’s a Polyp, which has opened advocacy opportunities I never imagined or expected. For others, it may be a complete career change though. For example, a friend of mine decided she wanted to add to her own personal medical experience and expertise by becoming a nurse to help others with her same conditions. What an incredible way to apply one’s own learned expertise to be able to apply it daily to others going through the same experiences! For those with the same passion, travel nursing can be an opportunity to afford one not only the chance to help others but also allow for seeing the world, which may not have been possible previously due to financial constraints often experienced with chronic illness.  

Finding Balance 

Balance is a key part to self-care, something we often forget. Often times, we will dedicate the majority of our time to other pursuits – whether it’s work or simply daily survival. Either way, when our focus and activities do not allow for self-care, we are at risk of burning out, we become more exhausted physically and mentally. In learning what self-care meant for me, I had to learn what boundaries I needed and how to maintain those boundaries. Part of that was establishing a better work-life balance. I know that I need two days off in a row from work and I started taking at least one day off every month for myself and taking at least two weeks of vacation each year. At home, I set boundaries for my activities on the weekends to allow a continued activity-rest balance. Knowing our limits and learning to say no without feeling guilty helps us to preserve the energy that we need for self-care and recovery. That way, we can continue on. 

Establishing New Friendships 

Friendships and community make a world of difference, especially when it comes to rare diseases. I felt completely isolated and lost growing up not having access to community with others outside of my family with my rare diseases. I’ve found also that it can be hard to make new friends as an adult, being out of school and even making friends outside of work – where, let’s face it, most of us spend our time if we’re able to work. Thinking outside of the box of different ways to meet new people can be helpful in building new friendships to help us decrease isolation, grow our support network, and ultimately, also add to our self-care. Sometimes it can be difficult to let others in, we often guard ourselves due to our chronic illness in fear of rejection or lack of understanding from others – but leaving our comfort zone can absolutely be worthwhile and rewarding in ways we previously hadn’t imagined.

 

Living with chronic illness isn’t easy by any means, but we also don’t have to be fully consumed by it. Sometimes, we just need to think outside the box to change our perspective and allow new opportunities for self-fulfillment to occur so that we may shift from surviving to thriving with chronic illness.