How Parents Can Manage Anxiety to Support Their Children with Rare Diseases

 

This is a guest post by Katie Conroy

Parents of children with rare diseases carry a unique, constant pressure: staying medically vigilant while trying to keep family life steady. Parental anxiety can slip into daily routines through tone, urgency, and reassurance-seeking, even when parents work hard to hide it. Over time, that stress can shape children’s well-being, affecting how safe they feel in their bodies, how they interpret symptoms, and how they handle uncertainty. The goal isn’t to erase worry or blame parents for having it, but to notice the impact of anxiety on children and respond in ways that support managing anxiety in families.

Use a Two-Part Check-In: Spot Anxiety in You and Your Child

Anxiety can become “contagious” in a family, especially when rare disease care keeps everyone on alert. A quick two-part check-in helps you notice what’s happening without guilt and choose a calmer response in the moment.

1. Do a 30-second body scan for parent anxiety: Look for signs of anxiety in parents such as a tight chest, jaw clenching, racing thoughts, irritability, snapping, or urgency to “fix it right now.” Name it simply, “I’m in alarm mode”, because labeling emotions increases emotional awareness and creates a small pause before you react. If your shoulders are up by your ears or you’re talking fast, assume your child can feel that intensity, even if you haven’t said a word.
2. Run a child-focused scan: body, behavior, and sleep: Anxiety symptoms in children often show up as stomachaches/headaches, clinginess, reassurance-seeking, avoidance of meds/procedures, tearfulness, or sudden anger. Sleep changes and increased worry questions are common early clues; if anxiety is already in the room, it helps to remember how common it is, 1 in 12 children ages 3–17 in the U.S. have anxiety. Treat the scan like information-gathering, not a diagnosis: “What’s their signal right now?”
3. Separate facts from predictions (out loud): Rare disease stress makes the brain jump from “today’s symptom” to “worst-case future.” Try a two-line script: “The fact is ____. My worry story is ____.” This protects your child’s well-being by reducing scary forecasts in front of them and keeps parent-child anxiety dynamics from escalating into a spiral of reassurance and panic.
4. Use a 60–90 second downshift before you problem-solve: When you notice your own anxiety rising, do a quick physiological reset: exhale longer than you inhale for 6 breaths, drop your shoulders, and unclench your hands. Then lower stimulation, soften your voice, slow your words, and reduce rapid-fire questions. This works because kids take cues from your nervous system; your calm body becomes a cue of safety.
5. Validate, then offer two choices to restore control: Start with: “This is hard. I’m here.” Then give two small, real options: “Do you want to hold my hand or squeeze the pillow?” “Do you want medicine with water or juice?” Choices reduce anxiety by giving a sense of agency without pretending the situation is optional.
6. End with a 2-minute reconnect and a tiny plan: After the moment passes, repair quickly: “I got tense earlier, I’m practicing staying steady.” Ask one question that builds awareness: “Where did you feel the worry in your body?” Then pick one micro-step you can repeat later, one breath pattern, one phrase, one calming activity, so your family has a reliable reset when stress spikes.

Build a 10-Minute Self-Care Mini-Plan That Actually Fits

Once you’ve spotted how anxiety shows up for you and your child, the next step is protecting your baseline with small, repeatable self-care. Self-care doesn’t have to be elaborate to help regulate anxiety, it just needs to happen consistently. Make time for exercise in ways that fit real caregiving and workdays: take the stairs instead of the elevator, or use part of your lunch break for a short walk. Many parents find that simple healthier lifestyle choices are easier to maintain than big overhauls, especially during intense weeks.

Daily Calm-Builder Habits for Rare-Disease Parenting

When your child’s health feels uncertain, routines are what make steadiness possible. These habits lower your reactivity, model coping, and give your family a simple plan you can return to on hard days.

Two-Minute Body Reset

●     What it is: Do a five-minute breathing exercise or shorter, focusing on slow exhales.

●     How often: Daily, especially before appointments.

●     Why it helps: It signals safety to your nervous system and softens anxious spirals.

Trigger Notes Together

●     What it is: Help your child identify triggers and name body clues and feelings.

●     How often: Weekly, plus after big flare-ups.

●     Why it helps: It turns overwhelm into patterns you can prepare for.

Worry Window and Close

●     What it is: Set a 10-minute timer to write worries, then stop.

●     How often: Daily or 3 times weekly.

●     Why it helps: It contains rumination so it does not run the day.

One Clear Next Step

●     What it is: Choose one action you can finish today and do it first.

●     How often: Daily.

●     Why it helps: Small wins rebuild control when symptoms and tests feel unpredictable.

Connection Check-In

●     What it is: Ask “What was hard?” and “What helped?” at bedtime.

●     How often: Daily.

●     Why it helps: Your child feels seen, and you learn what support works.

Common Questions Parents Ask About Anxiety and Care

Q: What counts as parental anxiety when your child is medically complex?
A: It can be constant “what if” thinking, irritability, trouble sleeping, or feeling keyed up before labs and calls. Many parents assume it only “counts” if there are panic attacks, but worries and fears can be anxiety too. Naming it helps you respond rather than push through on autopilot.

Q: How does my anxiety affect my child if I never say it out loud?
A: Kids often notice tone, pace, and tension even when adults stay quiet. Research following families found parental anxiety predicted child anxiety, which is a good reason to practice small calming skills early. A practical step is to slow your voice and body for 30 seconds before answering questions.

Q: Why is it so hard to manage anxiety when appointments never stop?
A: Chronic uncertainty keeps your nervous system on alert, so “relaxing” can feel impossible. Aim for regulation, not perfection: choose one repeatable micro-skill you can do in waiting rooms and parking lots.

Q: When should we consider mental health support as a family?
A: Consider it if worry is disrupting sleep, relationships, decision-making, or your child’s sense of safety. Therapy can also help when you disagree about risk, treatment choices, or how much information to share.

Q: Can I care well for my child and still need help myself?
A: Yes, needing support is a sign you are carrying something heavy, not failing. Start by telling one trusted person what would genuinely help this week, like a ride, a meal, or sitting with you during a phone call.

Sustaining Calm So Your Child’s Care Stays Steady

Rare disease parenting often means living with uncertainty while trying to stay strong for everyone else, and anxiety can quietly drain focus and energy. The path forward is long-term anxiety management grounded in parental self-awareness, steady support systems for families, and realistic child well-being strategies that can flex with changing needs. Over time, this approach supports sustained mental health, clearer decision-making, and a home environment that feels more predictable even when care is complex. Manage the anxiety, and the whole family’s capacity expands.

Katie Conroy enjoys writing and created AdviceMine where she shares advice from her experiences, education & research. She particularly enjoys writing about lifestyle topics and created the website to share advice she has learned through experience, education and research

Cognitive Behavioral Therapy for Chronic Pain

I attended a seminar on Cognitive Behavioral Therapy (CBT) for Chronic Pain. It was extremely enlightening and helpful in understanding additional methods to increase quality of life with chronic pain. I have been seeing more articles and information about mental health being included in the management for chronic pain but haven't had the opportunity to yet complete a deep dive on all the information I've found. This idea of how mental health can affect chronic pain was more unfamiliar to me than I would have guessed, and it wasn't until I attended this seminar that the brief amounts of information I had been reading, finally made sense to me. I actually didn't realize either that there are CBT protocols for specific issues including pain and even insomnia. 

CBT is a therapy method that I believe whole-heartedly in for a variety of areas in life from improving mental health to even helping raise children and train pets. The premise and tools of CBT are that versatile. And when I combined the understanding I gained from this chronic pain seminar with my new knowledge of how the brain works to develop everything from how we interpret interactions, emotions, moods, to our core beliefs about ourselves and the world...holy cow, did CBT for chronic pain make even more sense. 

CBT for Chronic Pain (CBT-CP) has been researched for over two decades with strong evidence for its ability to improve quality of life. Unfortunately, not a lot of medical providers are aware of this, so they don't refer their chronic pain patients to mental health counseling. But that doesn't mean a chronic pain patient is out of luck. The manual for CBT-CP is available online, at no cost, so any qualified mental health professional can access and implement it into their therapy practice. And since it's free online, anyone who wants to implement the practices into their own lives can do so too. 

The protocol is spread across 12 sessions, although this can be lengthened as indicated. The basis of CBT-CP is that there is a connection not only between thoughts, behavior, and emotions but also with chronic pain. We know that in the cognitive triad of thoughts, behavior, and emotions there can be a cycle established that reinforces each of these aspects. For example, I'm sad so I decrease my activity participation, I then feel isolated, and I start to develop depression, my depression tells me to isolate more, this makes me feel sadder and lonelier, I then feel more depressed and hopeless, etc. Introduce chronic pain into this cycle and it also becomes reinforced while reinforcing the other aspects. For example, I hurt so I'm not going to do this activity, that makes me sad, and I feel more isolated from others, I think others don't want to bother with me because I can't do this activity, I focus on my pain, that makes me more irritable and hopeless feeling, I start feeling more depressed, etc. 

CBT-CP focuses on identifying (with collaboration from the client's medical providers) an exercise and pacing routine followed by increasing cognitive coping skills. By targeting chronic pain indirectly by addressing one's thoughts, emotions, and behavior that affect pain, it will help make it easier for a person to do what they are wanting to do and thereby increase quality of life. It's important to understand that CBT-CP does not cure or fix pain nor is perfection the goal, it is a tool for increasing quality of life in the self-management of chronic pain.

This first part of exercise and pacing allows for increased activity without the pain flares we so often experience every time we start to feel better again. When I learned this, I also had an "a-ha" moment for a deeper understanding of why I had been seeing an emphasis on "pacing" in the chronic illness community for the last several years. It was, again, a term or practice I didn't really understand and hadn't researched much. I simply did activities as I was able to, often to an extreme level, and then dealt with the consequences afterwards - whatever those might or might not be. And I didn't think about it or analyze my actions and my symptoms. But this idea of pacing would be something that I would start to have more familiarity with following my gallbladder removal as I would find myself restricted to one day of increased activity without a pain flare that would last 3 days. And to help get past the one-day limit, I finally gave into attending physical therapy. But it was during this year that I would unknowingly be playing around with the concept of pacing. 

A common cycle for chronic pain patients is: I hurt so I restrict my activity and rest during my pain flare, once my pain flare subsides, I'll engage in all the activities I can that I wanted to do before that I now feel well enough to do, but then I engaged into much for my body, and I have another pain flare requiring another rest period. However, these recovery periods become longer and longer over time and the longer the recovery period, the more deconditioning our bodies go through creating a vicious cycle of increased pain and decreased activity. 

To the cognitive coping skills part of CBT-CP, think about the 5,000-6,000 thoughts a day a person has on average. How many of those thoughts do you remember from yesterday? We have so many automatic thoughts that whip through our brain and a large number of those tend to be negative, discouraging thoughts that our brain keeps hearing and those thoughts can influence our emotions and our behavior. And when chronic pain is involved...we have even more negative thoughts. Have you noticed when you focus your thoughts on pain that you're having in the moment, that the pain tends to increase? 

Pain is a subjective experience that can only be quantified by one's subjective view or rating of it up to a degree. This isn't to say at all that pain is just in our heads but that there is a difference in the body for measuring and identifying pain levels once pain starts to affect the nervous system. 

Pain is influenced not only by biological factors but also social and psychological factors. The way that we're treated by others can affect our pain level as well as how we treat ourselves psychologically and how our body responds. 

The body reacts to pain with autonomic, endocrine, and immune responses that can increase pain and activate the sympathetic nervous system - the fight or flight mode. When the sympathetic nervous system is activated, it can be measured by heart rate, galvanic skin response, muscle contraction, and EMG procedure that shows muscle response to electrical activity. 

When I'm having to wait longer in a provider's lobby, I start to think about  how long I've been sitting there and how uncomfortable the chair is and then the next thing I know, my body is aching because I've been sitting in an uncomfortable chair for a long time without feeling able to move or walk around because the more I move, the more likely I'll have to go to the bathroom and if I have to go to the bathroom before I'm called back then I worry I'll get called while I'm in the bathroom and they'll think that I'm not there so my appointment will get overlooked or delayed even longer. So, I get into this cycle of spiraling anxious thoughts and a focus on how uncomfortable my body feels trapped in this chair for an unknown length of time. 

What can one do about this to help with chronic pain? 

The cognitive work in CBT-CP is vital as a preparation for implementing behavioral changes to address chronic pain, which in turn will address the emotions we develop as a response to pain and our health conditions. It is also important to obtain medical clearance from one's medical provider for behavioral changes to be implemented and worked on in conjunction with various medical modalities as indicated, such as neurology, pain management, or physical therapy.

An integral tool for assessing progress in CBT-CP is pain measurement tools such as SUDS - Subjective Units of Distress. This identifies where one is starting in their pain level and how it's affecting their quality of life. As the sessions continue, SUDS also identifies not only progress but also what is and isn't working for the individual. There are several different pain assessment models that can be used including ones specifically for children and nonverbal individuals. 

Once the current level of pain, its impact on quality of life, multidisciplinary collaboration and goals are established, it's time to start learning and implementing CBT itself. 

Part of that is realizing that chronic pain is not acute pain. Pain tells our body to activate the fight or flight mode as a proactive, protective response. Our body isn't able to distinguish between acute and chronic pain, we must learn how to instead. The fight flight mode is appropriate when experiencing acute pain but not chronic pain. This is because during acute pain, our body is telling us to stop or get out of the situation to protect itself, it is under threat and harm. This alarm tells us to not engage in activity out of fear of causing harm. Which can occur during acute pain with increased activity, whereas with chronic pain this is usually not the case. Therefore, due to the ongoing condition of chronic pain, the pain that one experiences no longer is a reliable warning that harm is occurring. Rather than withdrawing from activity in fear of causing harm with chronic pain, it is to our benefit to engage in activity with pacing practices in place. Movement not only helps with muscle recovery but also maintaining joint maneuverability and flexibility. When I was in physical therapy to correct the deconditioning that I experienced following my gallbladder removal, there were days that I had a pain flare following the initial sessions and with new exercises. On those days, my therapist explained the importance to continue engaging in movement so that my body would better recover and maintain progress through the pain flare. To do this, I was taught recovery exercises to complete during pain flares rather than my every day strengthening exercises. 

When we over engage in activity, our pain increases requiring longer and longer recovery periods each time as our body becomes more deconditioned during each recovery period. To break this cycle, we must engage in activity in regular intervals to recondition our bodies and reduce the chronic pain cycle of crashing and burning.

The intervals for regular activity of what a person can tolerate is extremely individualized and may require a trial-and-error approach to determine where someone's limits lie. Limits can be determined by starting with intervals of activity as small as needed. An important part of this is physical exercise to recondition the body to allow for greater activities as the sessions progress.

Identifying that one has pain when doing X activity for Y amount of time. This can be determined in two ways - 

1. I do activity until I start to feel pain and I know I need to start with a shorter time interval than that 

2. I am able to do activity for this amount of time without pain, I will increase the time incrementally to determine what time interval I can tolerate.

Pacing comes into play by stopping the activity at the identified interval and allow for a recovery period. To further reduce deconditioning, pacing amounts can also be determined by pacing at 50% rather than 100%. The goal is to reach a steady pace of activity and rest to avoid pain flares, deconditioning, and increase quality of life.

Moderation is the key principle to pacing. This is a hard concept for many of us as we are used to over engaging in activity on our good days leading to us crashing and burning. We often think that it takes less time, and we can be more productive if we get everything done when we feel our best. In actuality though, this takes more time away from us and what we may be needing to do. Moderating our activity allows for more things to be done in total with less recovery periods required. 

For example, we can go full throttle for two days straight but then have a flare that requires a week recovery.  Or we could pace ourselves for the week at a certain percentage each day of activity and rest and not have a pain flare that requires an extended recovery period.

As we rebuild our bodies with exercises and engage in activities with pacing, we can monitor our ability to increase that activity time with incremental increases to the intervals between activity and rest. This is not to say pain will no longer occur, but that with moderation we can better control the balance between activity and pain so that our chronic pain is more tolerable and what we enjoy becomes our focus rather than our level of pain. 

Relaxation training becomes more integral for quality of life with the deeper understanding of how emotions and pain affect out nervous system and therefore our stress responses. As mentioned previously, stress responses can increase pain. If we reduce our stress responses, we can reduce our pain as well. Enter relaxation training. There are a multitude of relaxation practices that one may implement in addition to breathing exercises and meditations. Relaxation exercises are not cookie cutter as some are more enjoyable or more effective depending on individual preference. Therefore, it's helpful to experiment with different techniques to discover what is best suited for a person.

The next integral part for increasing quality of life, is engaging in enjoyable activities of interest. I discovered how integral this is to experiencing joy that allowed me to start living my best life. It's the things of interest that really give us quality of life and the ability to engage those things, even when it's in a modified way, we can still extract joy from the experience.

It would not be uncommon along the way of these sessions to encounter cognitive resistance. As discussed earlier, throughout life and in reaction to everyday life experiences, we train our brains to think in certain ways. Unfortunately, we don't always train our thoughts to be the most helpful. Learning and identifying the distorted thoughts we use to view the world with allows for starting to change those negative thought patterns. There are 13 common distortion patterns that we are all guilty of using at some point or another. These include:

• filtering out the positives so that we aren't even aware of them
• discounting positives so they don't even matter
• polarizing thoughts to it's all or nothing, black or white, there is nothing in between
• overgeneralizing one thing and applying it to everything in a never-ending situation
• jumping to conclusions or mind-reading without actually knowing the real situation
• catastrophizing every situation to the worst possible situation, regardless of likelihood
• personalizing things that have transpired as having occurred solely because of ourselves
• fallacies that you have all the control or none of the control in a situation, measuring behavior or situation based off how fair they feel to us and believing that others should change to suit what we want
• blaming others for our feelings
• shoulding ourselves or others to what we expect without allowing for exceptions
• emotionally reasoning that because we feel a certain way about something, that must be a fact
• labeling or mislabeling ourselves or others with judgement and without considering context
• believing we're always right despite evidence and the feelings of others

As we become more familiar with when we're engaging in cognitive distortions, the more we will become aware of them and be able to catch them so that we can change them. My favorite way to change thought patterns is using cognitive reframing or restructuring to challenge the thought and replacement with a slightly updated new thought. 

Cognitive reframing isn't changing a thought completely; it's simply tweaking it. When we whole-heartedly believe a thought to be fact, we're going to have resistance to the idea and attempt to completely change that thought to the opposite. Instead, if we complete a simple, small tweak, we will be more successful and over time, with repeated use, that thought pattern will change.

Let's use the thought that "I can't do any activity without having a pain flare!". Breaking that thought down and earnestly looking for what activities do I do that haven't caused a pain flare, no matter how small of an activity it is. It doesn't have to be activities we enjoy even. Simply tweaking the thought from an all or nothing thought to allow for the positive - "I still have pain flares, but I have been able to do X without a flare". 

Challenging questions for that thought could include what small things am I able to do without a pain flare? (Sitting up, drinking water, however small it needs to be). When something is painful to do, how long does the pain last? Does it last the same amount for every single activity I do? Are some things less painful to do or require less recovery time? 

As we challenge thoughts and find exceptions to the thoughts, the more we give back to ourselves, the more grace we allow, and the better we become at seeing the exceptions. In turn, our behaviors change and in turn, our mood. When we feel less hopeless, defeated, even angry about something the more motivated we become and likely to do things and focus on things in life that add to our quality of life. 

Not only does changing negative thought patterns improve mental health and reduce painful emotions that trigger our sympathetic nervous system, but it also increases our coping ability with pain. 

The last piece in CBT-CP is to look at the pain and sleep interaction. Sleep is necessary for body recovery physically and emotionally. Poor sleep can increase our sensitivity to pain. Therefore, practicing good sleep hygiene and even participating in CBT for insomnia can affect pain levels.

Good sleep hygiene includes:

• only going to bed when sleep, not just tired or fatigued
• using one's bed only for sleep and sex
• if unable to sleep after 20 minutes, get out of bed and only return to bed when sleepy
• awakening at the same time every day and going to bed at the same time each night
• avoiding naps during the day
• keeping the bedroom dark, quiet, and comfortable for sleeping
• limiting caffeine intake after 2 pm
• limiting food intake for 3 hours prior to going to bed

Learning how to implement each of these parts in my life has significantly increased my quality of life and how I manage my chronic pain. It took me about a year to find and maintain an effective self-care practice of exercise, pacing, and activity for what works for me. There are times I slip back into old habits, and I have to catch myself so that I can correct. I hope that with time and practice, you'll start seeing changes soon as well.

Caregiving for Mom - The Last Years

Jenny, Mama, and Daddy

The conceptions we create of our parents over time as we grow from children to adults can be quite interesting to say the least. We come to learn new details about our parents that challenge those long held perspectives we've built, leading us to see our parents in a brand-new light.

This has been my experience with my mother and my understanding of her has a strong patient advocate. I grew up not only believing but knowing my mother to be a fierce advocate for me. I learned how to be a patient advocate for myself and others by mom's example, seeing how hard she advocated for me over the years into my adulthood even. Naturally, I presumed that my mom was just as strong of an advocate for herself as she always had been for me. And perhaps she always was. I know she was with insurance companies a fierce advocate for all three of us. But outside of the home, I wasn't there to witness her self-advocacy most of the time.

I started this article months before we lost my mom. When I re-read it to try to finish it soon after losing mom, I felt like I had been so unfair to mom about her level of self-advocacy. The day before she was hospitalized, I had even told mom, "I wish you took your health serious" in frustration when mom and dad told me that neither one of them had yet to call her Urologist two weeks after her ER trip for UTI. Mom replied "Whatever" in disgust. That's all the energy she had to spend on it. I apologized to her the next day when I saw her. She told me it was okay. I'm so glad I made sure to apologize to her.

In spite of mom's multiple health conditions that caused pain and limited her absorption, she was holding her own remarkably well until 2023 when her symptoms appeared to be out of control to me - her blood sugars wildly high with extreme lows, her mental capacity affected by relentless fatigue, ongoing urinary infections, and chronic pain. As an adult, I never shied away from sharing my medical knowledge with my mom for helping her to receive the best medical care and resources available. But I didn't interfere or assist with her medical care until 2023. I didn't know she actually needed me to but as I began to discover the magnitude of her worsening symptoms, the more I realized my conception of my mom as a strong patient advocate in a large part seemed to only be applied to her advocacy regarding my care - she wasn't using her advocacy skills for herself, and she had all kinds of understandable reasons to why that was. What I discovered through it all, was I don't think mom knew the right questions to ask and she became so overwhelmed with multiple medical appointments every week and her body was becoming increasingly tired, weak, and painful that the frustration of it all led to a bit of indifference at times that I don't think necessarily was there in years prior. 

We agreed that I'd take an active role in her medical care going forward, acting as her liaison between her and her doctors, assisting with arranging care and going to appointments with her as needed. By the one-year mark of my active role in her caregiving, she was in a lot of ways in a better place physically than she was before I took over her care. I still grapple though with trying to understand how my mom allowed herself to get into some of the situations I found her to be in because she didn't advocate for herself when she fiercely, unashamedly advocated for me even when I hadn't asked her to and especially when I told her not to, and she still did. 

With my assistance, we changed some of her providers to ones I trust. I have a long-held mistrust of medical providers on the count of my medical trauma as a child, so when I trust a provider, it means a lot. This included changing her Rheumatologist and Endocrinologist. Over the last year of her life, she was diagnosed with Rheumatoid Arthritis and was in the process of being scheduled for an infusion to reduce her high inflammation markers. She continued to have chronic urinary infections that her Nephrologist believed resulted in a bacteria colonization of her bladder and had become drug resistant. In addition to the Nephrologist, she was also followed by a Urologist who aided with managing her urinary infections. We were receiving the guidance of a Diabetic Registered Dietitian who worked in conjunction with her new Endocrinologist for her Diabetes. She also was receiving treatments from a nerve renewal clinic for her Neuropathy that had improved her mobility and balance. 

I'm fortunate that dad remains in pretty good health and together, we were able to coordinate care for mom. As someone with a multitude of chronic health conditions myself, I honestly don't know how others manage their own health and that of their loved one without help especially if the caregiver is still working. I know it was a lot at times even for dad to leave the house to run errands or complete other necessary business due to fear of leaving mom alone. A fear that was understandable and dependent upon not just the day but the hour. It worked well for us that dad was able to attend and take her to her appointments and I focused more on the communication with providers and coordinating care as I have a deeper understanding of the behind the scenes and medical details. This knowledge, sometimes an annoyance to my parents, helped them better understand the gravity at times that mom was facing and led me to have some quite frank, heart to heart conversations with my parents. 

Understandably, mom became tired of having so many doctors to see and taking so many medications. She had quite a lot more to cope with than myself. Yet, at times I struggled with her resistance when she told me she didn't want to pursue an evaluation or treatment because she didn't want to have another appointment or another medication or nutritional supplement. I struggled with my patience and empathy at these times as I was transported back in time to my high school years when I wasn't given a choice and in efforts to quite literally keep me alive, I was forced to endure repeatedly painful procedures and follow strict, absolutely dreadful protocols. Mom struggled with a poor appetite and unintentional weight loss from her malabsorption issues from multiple disorders (and as I feared, also Failure to Thrive). I often wanted to scream "I'm just trying to keep you alive!". The nutritional supplement options from 20+ years ago are significantly better in not only options available but also in taste. As a teenager I was forced to ingest foods that made me gag from the taste and odor of them but nowadays, there are protein bars that taste just like candy bars and protein drinks that taste like milkshakes. 

It was in these moments that I had to pause. Patients often feel smothered, controlled, and burdensome in regard to their caregivers and caregivers often feel overwhelmed and consumed by their concern for their loved ones. These feelings though are frequently miscommunicated in ways that hurt the patient-caregiver relationship leading to feelings of resentment. Keeping this in mind, I paused. Arguing is not helpful. Clear communication of feelings and knowledge as to why XYZ is being asked of the patient and why ABC is being resisted by the patient is helpful to come to an understanding of one another and the root issue. It's at these times that I set my parents down for a heart to heart. 

Fortunately, mom responded well to these heart to hearts and they left her with increased motivation, and we were able to devise a plan for how to still pursue an evaluation with possible treatment but closer to my mother's terms. For example, when she told me that she didn’t know if she still wanted to pursue a Hematology referral we compromised on, make the appointment as the Hematologist doesn't likely have any new patient openings for anytime soon and if it's still earlier than you'd like, schedule it further out.

While her symptoms did significantly improve after I started helping in her caregiving, the last 8ish months of her life, her health rapidly declined to the point that I knew if things continued the way they were, she wouldn't survive another year. One of my worst nightmares is losing my parents and is something I've been fervently working to process and heal from in therapy since 2022. Thankfully for my own well-being, I stopped running from the pain of processing my trauma that solidified an unhealthy attachment to my parents. I'm not sure how I'd be able to cope with the events that have been transpiring if it weren't for the intense trauma therapy I continue to receive.

In my opinion, there were 2-3 main areas of focus for decreasing mom's symptoms to allow her a better quality of life and an extension: managing her liver disease, Rheumatoid Arthritis, and urinary infections. 

We made a lot of progress alone in her liver disease by the success of her Advanced Endoscopist (two weeks before her passing) to finally and fully remove a large bile duct polyp that significantly contributed to the development of liver disease. The location of this polyp was only allowing our GI specialist to trim the polyp every 3 months in an ERCP. As the polyp grew, her symptoms worsened and each ERCP was hard on mom requiring additional recovery period. While the Advanced Endoscopist was successful in fully removing this large polyp, another polyp was discovered further up in the bile duct but was scheduled to be tackled in her next ERCP. 

She was diagnosed with Emphysematous Cystitis (EC) just two weeks before she died. EC is a UTI with a gas producing bacteria. This was particularly concerning for me as the mortality rate for EC is reported to be 7% and if not caught early, increases to 20%. This wasn't what ended up killing her though.

Combining this knowledge with my trauma attachment, was devastating for me. However, I coped much better than I would have before I started my intense healing journey in 2022. While I was fearful and anxious, I was able to navigate it with greater ease than in the past and came away from that experience with the realization that I needed to remain alive for mom to receive the care she needed, especially if her health was going to continue to decline. And most importantly, I was okay with being alive for her until her passing. This alone is an incredible display of growth on my part as I've had the long-held wish that I should die before my parents out of fear of how I would even possibly be able to cope and live without them. Through my therapy and before losing mom, I reached a place I knew I could not only envision life without my parents, as difficult as it would be, but I knew that I would be able to manage. While my life wouldn't be the same without my parents, I believed I would be able to find a way with the support of my people, to live and not merely survive. I still do not want to live without my parents, but I was able to trust that I would be able to live and accept the need to be alive for my parents' well-being during their final years. Now don't get me wrong, I still hoped we all three would have died together as my parents and I have often joked about in some natural disaster - this remains my ideal. 

Dad and I never imagined though that we would lose her so soon. I tried to prepare dad for thinking ahead because of mom's rapidly declining health. I was afraid she would require a 24/7 private caregiver or nursing home placement before long. After she was treated for the EC, she had an incredible 1.5 weeks for her. She went out and did things, went to many medical appointments and was able to go do the things she wanted as long as dad drove her and helped her walk into places. And then on that Wednesday, she started feeling worse. Thursday, she cancelled her medical appointment that day. Friday she couldn't move without dad's help, she was hardly eating or drinking anything. She refused to go to the hospital. Dad never pushed mom to do anything medically she didn't want to do. She didn't seem to take it well from dad. Whereas, with me, she did. 

I came over on that Saturday morning and dad asked me to try to convince mom to go to the hospital, to the main location, and by ambulance. Mom was curled up on the couch, she probably weighed under 100 pounds at this point if it wasn't for the loose skin of her apron belly from her abdominal surgeries. She couldn't move any amount without increased pain and of course remaining still didn't alleviate her pain either. She couldn't walk by herself; she couldn't pick up her legs onto the couch herself. She couldn't really do anything by herself. Amazingly though she was able to clearly remember her medications and when to take them. Liquid dribbled out of her mouth when she tried to drink from a straw - more than I had ever seen. She could barely talk. She had difficulty enunciating and while she could kind of say sentences, they had to be short, but the words were hard to understand. These two things alone were new, alarming developments.  

When talking to mom about needing to go to the hospital, her response was "what are they going to do? Give me fluids and antibiotics?". She was exasperated and I could tell she didn't think the hospital was going to do anything more than fluids and antibiotics so what a waste. I just thought "No, mom. They're going to do so much more." I explained to her that she couldn't live much longer like she had been the last two days, she wouldn't make it through the weekend if she didn't go to the hospital. I convinced her to go by ambulance to the hospital we knew she needed to go to for the best care, where most of our doctors are. 

I had access to mom's patient portal so every time she had any test done even in the ER, I could view the results long before the ER nurses or even the doctor came to tell us. From the lab results and when the ER doctor was finally able to see us all in person, he asked the nurses why she was still there in ER in an urgent questioning manner and when he said, "She should be in ICU", I knew we were way deeper in it than any of us had realized. We never would have guessed that mom was in septic shock, her life was second to second. The ER doctor wouldn't let mom make any decisions, he said she was cognitively impaired from the sepsis. We went against mom's wishes and made her a DNR for that day and night. And through all of this, mom had some of the best hearing she had in years and would remember things being said around her and then later on ask for clarification about what we were talking about. We were astounded. But that was mom. She was always leaving us astounded and she continued to the rest of her life up until her final breath. She was alive long after she medically, scientifically should have died. She became lucid enough in the midst of everything that while I was making the medical decisions for her, I felt she was lucid enough to be involved in her care and to know what was going on, no matter how harsh the truth was. And that's how mom wanted it - she wanted to be involved in her own care and she didn't want anything kept secret from her. She furrowed her brows I was told when I would talk quietly to any hospital employee and especially if I stepped out of the room to talk to them. And she would relax and appear relieved and peaceful when I would come back and tell her what had been discussed. She even asked me that second day in the hospital, "You wouldn't lie to me, would you?" No mama. Never. She hated it when I told her we didn't know things, she was afraid that I was hiding the severity of things from her. I just didn't know because I couldn't tell the future - I knew the current risks but I didn't know what was for sure going to happen until the day I had to tell her that we were putting her on hospice. That was when we knew there was no more hope of saving her. The only thing left I could do as a caregiver was make her last days as comfortable and full of love as I possibly could. And I did just that with the help of my dad and mother-in-law. She died with me and dad by her side. Her ever-faithful daughter never leaving the hospice facility and rarely leaving her room while her ever faithful husband took care of their home and her pets for her when he wasn't at the hospice facility.

Mom had an affinity for dragonflies the last few years of her life, she liked that they're called Skeeter Hawks. As we left the hospice facility to return to our own homes respectively after saying our final goodbyes to mom's physical body - a dragonfly was caught in the grill of mom's car. I asked dad what he thought it meant.

"I caught her". 

Watch Sharing Mama's Story for a detailed account of mom's last weeks alive, including our time at the hospice facility together. 

Meditation Effects on the Brain

I attended a seminar through the Institute for Natural Resources titled Meditation and the Brain: Physiologic Effects, Mindfulness, and Mental Health. It was very enlightening learning about various methods of meditation and their effects on the brain that I will share with you below. 

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.