I have been writing a series of posts about my grown daughter, Michaela, and her path back to health from COVID and then from Long COVID, which started with the first blog post here. It has now been 20 months since the initial acute COVID infection, and the last 6 months have been better than any Michaela has had since being diagnosed with COVID.
Since my last blog post on the topic in the beginning of January 2023, Michaela has tried only one new modality, Neurofeedback. Sadly, it turned out to be too much for her body and nervous system. While my experience with Neurotherapy was wonderful (which I wrote about here), we learned from the results of Michaela’s QEEG (Quantitative Electroencephalography) that she had experienced some type of brain injury in her early childhood. This injury could have occurred at birth, when the doctor used a “suction method” to guide her through the birth canal, or one of the several times that she fell down the stairs of a 100 year old home in which we lived when she was a toddler.
The QEEG isn’t capable of providing the date of the injury, but the results of the test were consistent with someone who had experienced a traumatic brain injury many decades previously. The reason why that was important to know is that Michaela’s brain isn’t communicating optimally from one side to the other, which creates energy discrepancies, and makes Neurotherapy more challenging, requiring the sessions to go much more slowly.
The previous brain injury was also likely to blame for her grand mal seizures after she experienced severe dehydration back in 2017, which I wrote about here. So the culmination of a childhood brain injury, plus two grand mal seizures created a weak link for COVID to attack. (I wrote about COVID and a body’s weak spot here.)
For Michaela, that weak spot was her brain, and her brain fog and vision issues were the symptoms from COVID inflammation in her brain. We were hopeful that Neurofeedback would be able to quell that inflammation and to help her heal. Instead, it activated her nervous system to the point that she couldn’t tolerate doing the therapy. She wasn’t able to sleep for a week, and even deep breathing put her body into a fight/flight feeling that was untenable. She stopped the Neurofeedback, for now, and decided to continue to practice Zhineng Qigong as her sole means of getting better from Long COVID.
She has been able to practice various routines up to 5 hours a day, and has continued to see improvement. She’s able to ride in a car now without vision issues and nausea. She’s also able to work about 5 hours a day on the computer, which is a very big deal from where she began. She no longer has the feeling of burning organs, and her hives have lessened dramatically. She has more energy than she has had for the last year, and is able to follow conversations and engage in them! In other words, big improvements.
Michaela (laughing despite all she has been through), Me and Morgan
Michaela was interviewed by the Denver Post about her Long COVID experience. The article can be accessed here. (If you hit a pay wall, you can load the Denver Post app and access the free article through that.)
We continue to hope for an article that can provide more treatments for patients than just a litany of research, but Michaela wanted to share what works for her to help others.
The COVID pandemic has been going for three years now, and it keeps on giving – this time to my husband and me in the form of our first COVID infection. Given that we’re both in our 60’s, I’m grateful that we got a milder variant that’s now making the rounds in Colorado and beyond. I’ve recently learned some new information about COVID and its impact on the body that readers of this blog may appreciate.
I have been doing Neurotherapy for the last 7 months to help calm down my mast cells (a detailed blog post is forthcoming on this once I have completed my sessions). I had been advancing with each session and seeing some great improvements in my sleep and ability to focus when I came down with COVID.
What was explained to me was that in their Neurotherapy clinic, they have seen that COVID attacks a person’s weak spot. What I mainly felt during the acute stage of the infection was stomach discomfort (a common refrain for me with any type of illness since my mast cells congregate in my gut), and a lot of nasal mucous (and thereby a cough). I guess I’m lucky – I have two weak spots!
For some people their weak spot may be their gut, for others their lungs. And people may not even realize that the body part most affected by COVID is or was a weak spot. Suddenly, they are having issues with their sinuses, which they seemingly never had an issue with before. Or an old back injury that was healed becomes flared after having COVID.
This was fascinating to me that COVID looks for a weak spot to move into and exploit. I haven’t yet seen research on this, but we are just beginning to get an understanding of what the COVID virus does to our bodies.
The other thing I learned at Neurotherapy was how much COVID affects the brain. I had been doing 2 sessions a week of Neurotherapy for 5 months when I got sick. Each session is recorded to show on a computer screen how my brain is creating new neural pathways and decreasing inflammation. Having specific data of where my brain was functioning pre-COVID gave me a view of how much COVID affects the brain once I went back for more therapy sessions.
I didn’t really realize how much my brain had gone into a fog during the illness, and was still slogging along at about half speed once the acute illness had moved on.
I stayed away from Neurotherapy for two weeks to recover and went back to therapy with a seemingly congested brain, unbeknownst to me at the time. The amount of inflammation in my brain was visible on the computer screen from the probes placed along my occipital lobe and temporal lobe. What was easy for me to perform previously in Neurotherapy sessions was suddenly impossible! My brain was completely unable to focus on the task at hand, and I felt like I had mud in my neural pathways. It was shocking for me, and fascinating for my Neurotherapist to compare my therapy results pre-COVID to post-COVID.
It took weeks for my brain to recharge and get back to focusing and being able to hit the markers that previously I had achieved during Neurofeedback.
As of this writing, I still have the lingering cough, but my brain is back functioning and even doing better than its pre-COVID state according to my Neurotherapy results. From all of the news articles about people feeling brain fog, even labeling themselves as having “COVID brain,” it may be that all of us have a brain weak spot that COVID exploits!
My grown daughter, Michaela, has been experiencing long haul COVID after being infected with the virus in November 2021. (You can read a series of blog posts about this journey starting with the first post here.)
I have heard from many readers, which is wonderful! You have asked how Michaela is doing and have also shared that her journey with Long COVID has given you hope. She has learned more about what helps her feel better, and what is too much for her to tolerate. The items that she can tolerate continue to change as she continues to heal.
In the process of searching for healing of her symptoms, she tried many modalities, and found that Zhineng Qigong was gentle enough to not throw her nervous system into overload, and also powerful enough to really assist her healing. She continues to expand her daily 3-hour routine into new practices, slowly introducing new movements and watching how her body responds.
The Eden Energy practices that she tried didn’t provide consistent healing, and she decided to remove those from her daily protocol. The Medical Qigong was helpful to read about in books and to utilize sparingly. It was too strong for Michaela’s sensitive body systems to practice daily. She has learned a lot about Medical Qigong from a series of books about Chinese Energetic Medicine.
She had experienced more healing since my last blog post in July 2022 detailing her path to health, and we were very encouraged she was on the road to a full recovery. Sadly, everything took a turn for the worse in the fall.
In October 2022, the garbage disposal in her apartment backed up and a maintenance rep from the management company was sent to fix it. This began a series of issues of strange smells inside her apartment, the discovery of a sewer pipe that had an incorrect piece in the pipe, a water leak, and to top it all off, the entire apartment building lost heat for 1 week when the boiler went out during a hard freeze. All of these items were very stressful on her nervous system, but more than that, she began experiencing more and more brain fog, fatigue and general malaise.
So many Long COVID patients experience a recurrence of symptoms, that we chalked up her symptoms to another round of Long COVID exacerbated by the stress of trying to manage multiple maintenance people inside her apartment trying to fix problems.
Michaela looked under her kitchen sink in November and discovered mold building up on a cabinet board. She hadn’t looked under there previously, so didn’t know how long it had been present. She taped plastic around the cabinet area to attempt to keep the small area of mold that she could see from permeating her living area.
She has a diagnosed severe IgE allergy to mold, and has had reactions before ranging from repeated rounds of bronchitis (as a child, the school she attended had a water leak that ended up with a moldy classroom underneath the one she was in) to lung and breathing issues (when a previous rental she was in didn’t mitigate mold in a bathroom properly).
When the management company was ready to mitigate the mold, it was mid-December, and they sent Michaela to a hotel. Within a few hours, she realized how her lungs felt so much better. She was able to take big breaths for the first time in months. The management company was going to fix the pipe that had been improperly fixed previously and replace the cabinet that contained the mold spot, but wasn’t going to fix the floor that had rippled from the water that was caught underneath it. This meant that they weren’t even looking for mold that was possibly present in the floor boards.
After these fixes were complete, Michaela asked that an air sample be taken by a professional mold mitigation company to ensure that all the mold had been removed prior to her moving back in. The air sample came back with mold still being present, which wasn’t a surprise to any of us. By that time, she was realizing how many of her clothes and other personal effects that she had brought to the hotel were also covered in mold spores. She put on certain clothes and found that her eyes began to itch. The more information she got from the mold mitigation company, the more she realized that everything in her apartment was going to have to be mitigated to get rid of the mold, and many items like her mattress and couch would have to be tossed because there wasn’t any way to remove the mold.
The management company hired a mold mitigation company to come in to wipe down all the walls and surfaces. Sadly, the process began by spraying chemicals everywhere first! Thankfully, they continued to pay for Michaela to stay in the hotel, but it was becoming more and more clear that what they were doing was going to make her studio apartment unlivable for her sensitive body. Between the chemicals and the lack of removing the floor boards and flooring, her apartment was never going to be mold free.
In fact, we began to wonder how long mold had been present without her realizing it. The symptoms of mold exposure and those of long COVID are very similar. Brain fog and fatigue are vague symptoms that could be sourced from either or both. The key was to get her into a safe living situation to calm down her nervous system and get her back to at least where she was prior to the mold exposure!
The lease that Michaela signed when she moved into her apartment basically excludes remuneration for mold damaging items. They expect that the renter will have that in their renter insurance policy (Michaela didn’t purchase an addendum to include that, not knowing that such would be an issue, so she will receive no compensation for her personal items that have to be tossed – 50 plants, all her shoes, mattress, couch, cushions, pillows, etc). She was allowed to break her lease without a fee, which she has done.
A few days before Christmas, we moved Michaela from Denver to Colorado Springs to live with my husband and me. It’s been 3 weeks since she was in her apartment, and we can see her spirit coming back. She no longer has the fatigue and brain fog, and is looking forward to finding a new safe place to live with no mold.
Just washing her clothes ended up not being enough to remove the mold from some of the fabrics, so we will be taking all her clothes to a commercial laundry facility that uses an ozonator to remove mold. We hope to be able to preserve at least some of her clothes so that she doesn’t have to start from scratch setting up a wardrobe.
The year 2022 was an extremely difficult one for Michaela and for our family. Long COVID is like nothing I’ve ever seen, and she still has improvements to make to be able to get back to working full time, being on screens and being able to drive. The financial setback from the mold exposure was not only in losing most of her personal property, but also her inability to work. We are all looking forward to a more prosperous 2023!
There’s recently been recognition in the “forward thinking” Mast Cell Activation Syndrome (MCAS) doctors that mast cells have some type of communication with the nervous system. And this communication also seems to be occurring for long haul COVID patients. This communication appears to create the symptoms of anxiety, gastrointestinal issues and itchy skin, and may create other symptoms also.
As a patient with an MCAS diagnosis, and as a mother of a patient with a long haul COVID diagnosis, I can say that the nervous system is DEFINITELY affected by both of these conditions.
The autonomic nervous system is a complicated mechanism, and I’m certainly no expert. What I understand is that there is a sympathetic nervous system, which activates our bodies into fight or flight. This saved us from being eaten by a tiger many thousands of years ago, and is certainly necessary, but we don’t want it working all the time. Then there is the parasympathetic nervous system, which activates our bodies to rest and digest. We want a balance between these two systems.
My experience with MCAS is that the parasympathetic nervous system is no longer activated the way it should be, and my sympathetic nervous system is constantly overstimulated. Everything my nervous system comes in contact with is perceived to be a tiger – pollens, food, smells, etc. And my parasympathetic nervous system gets drowned out by all this overamping so that I have trouble digesting foods and getting a good night’s sleep.
In the short run, this isn’t a bad thing to have the sympathetic nervous system working hard. When we all lived with the danger of a tiger eating us, we wanted our nervous system to be highly responsive, to get us moving. Now, an argument with a family member shouldn’t stimulate the same response. Yet, when your nervous system can’t distinguish the immediate danger of a tiger from a kitten, the entire nervous system goes out of balance. And that is bad news for your body, especially when this imbalance lasts for days, months or years.
Mast cells are part of our body’s protection against viruses and bacteria, and are also stimulated during an allergic reaction to release many chemicals. From what I’ve been told, mast cells are in the layers of the gut and skin very close to the nerves, so it’s not surprising that there would be communication between mast cells and the nervous system. There’s been interesting research on the Significance of Conversation between Mast Cells and Nerves.
While there is very little research currently on long haul COVID, my daughter’s experience is that not only are her mast cells activating but she’s also having issues related to a dysregulated nervous system, such as dizziness upon standing, a fast heart rate and extreme anxiety.
So how does HeartMath figure into all of these nervous system issues? HeartMath is an app to allow you to view your inner emotional state based upon your heart rate and coherency. A Bluetooth device attaches to your earlobe to monitor your heart rate variability and guide you toward inner calm through real time feedback.
Heart rate as reflected on the HeartMath app. From the HeartMath Institute
If you are a follower of Dr. Joe Dispenza, he has been touting HeartMath for the better part of the last decade as a way to create the healthy vision you want in your life.
If you’d like to see a demonstration of HeartMath and the way to breathe to get the best results, watch this. (This video also includes information about how this type of breathing is helpful for treating long haul COVID).
I have found that there are times of the day when it’s really difficult for me to sit down and focus on my breathing. If I’d had a busy day at work, the transition into a calm breathing pattern is definitely needed, but sometimes quite difficult to maintain! However, I have been continuing to practice for 10 minutes a day, twice a day. I am certainly seeing results such as better sleep, more balance of my emotions and less anxiety overall. In other words, my parasympathetic nervous system is coming into balance!
For my daughter, she found that she has had to start small to not overwhelm her nervous system. Yes, even deep breathing can upset a very anxious body! If your nervous system is really overamped, you may need to start with just putting the Bluetooth device on your ear and breathing normally for several sessions before adding the deep abdominal breathing. The feedback from the app will communicate with you by sight with various colors and waves visible, but also by auditory dings. This helps your brain to know what it needs to do to “breathe better” and to create more calm.
I want to provide my body the best chance for healing, and if I can do so without medication and get good results, that’s amazing! There are HeartMath practitioners around the country that can assist you with getting all the information you need to get started on this. Or you can just purchase the Bluetooth device, load the app and proceed forth yourself. Either way, feeling calmer and less anxious will be your reward.
PS – I am not being compensated by HeartMath for this blog post. It is solely based upon my own and my daughter’s experience.
The ongoing saga of long COVID for my daughter, Michaela, continued into April 2022. Two prior blog posts on this topic are here (first) and here (second). She tried Benadryl, Pepcid, Zyrtec and Ketotifen along with Chinese herbs and creams, and each of them created more issues for her: vertigo, shaking, nausea and temperature extremes in her body. She decided to give up even trying to incorporate them into her healing routine.
She was experiencing so many symptoms that we realized that one doctor wasn’t going to be able to diagnose everything, nor provide a solution. The thought of her having to go to a cardiologist for the heart palpitations, an endocrinologist for her menstrual cycle issues, a neurologist for the brain fog, an ENT doctor for the dizziness and vestibular system, an allergist for the hives and mast cell activation symptoms, and an ophthalmologist for her vision issues was overwhelming. She didn’t have the energy to withstand so many doctor visits, nor the brain function to be able to make the appointments and then get herself to the doctor’s office without being able to drive. Yet she needed to do something, or she was going to continue to experience an array of issues that she had never had before with Mast Cell Activation Syndrome (MCAS).
My husband and I were doing searches online to help her find long-haul COVID groups (so that she might be able to speak with someone else experiencing what she was), dysautonomia groups, and any research that might be helpful for her to heal. We found that Western medicine doctors were prescribing medications that they hoped would work, which she couldn’t tolerate taking anyway, or sending patients to physical therapy, or sending them for more testing. We didn’t find anyone who had “the answer,” despite the fact that a few snake oil salesmen/doctors were out there peddling their “research”. A word of caution about that – given that Michaela and I have managed chronic illnesses for decades, we’re very attuned to doctors who claim to have all the answers that no one else has ever found. In general, we run in the other direction!
Because of her tenacity, Michaela got on the phone with Bright Health, her health insurance provider, and asked for help after telling them what she had been through with all of her symptoms and doctor visits that hadn’t provided her any help. She thankfully got a woman who listened, and provided her with the name of a physical therapist who she heard had some success with helping people with long-COVID. Michaela immediately called this new PT.
Michaela in her apartment in May 2022
Dr. Dan Stoot of High Definition Physical Therapy was the first doctor to understand what Michaela was going through and willing to help her with specific exercises. He was working on research about long COVID with the University of Denver, and had been working with patients for almost 2 years at that point and having success. He spoke with her over the phone and provided her with his cell number to contact him with any questions before her first appointment. This was wonderful! When she went into his clinic to be evaluated, he turned off the lights and asked her to do simple tests so as not to activate her nervous system. This allowed her body to calm down enough for him to get an accurate assessment.
He said that several of the issues that Michaela was experiencing were centered within her brain stem, and told her that her symptoms were similar to a Traumatic Brain Injury. He also told her that he had seen all the symptoms she was experiencing in his long-haul COVID patients. This helped her to realize she wasn’t alone in this mess. She shared with him about her suicidal thoughts, which he had heard about from other patients. This helped her to feel calmer, and that there was hope for some healing.
He had her begin with eye exercises since her inability to look at computer screens and to drive were the two biggest issues she wanted to handle. That one hour appointment wiped her out for the rest of the day!
Her body was in such a state of overload that she was having trouble sleeping, or even getting her body to rest, and also having issues with having enough energy to make it through an evaluation appointment.
She began to listen to the audio book for Breath by James Nestor which helped her to learn new breathing techniques to calm down her nervous system. Since she wasn’t able to be on the computer to watch any videos or do any Google searches, audio books and paper books became her sole entertainment and means to educate herself.
She began reading voraciously about Traditional Chinese Medicine, Immunology, Massage, Acupressure, Shamanic Healing work, the Autonomic Nervous System, Dysautonomia, the Vestibular System, and Qigong – especially Zhineng Qigong which came out of a Medicine-less hospital in China that combines Buddhist principles, Daoist principles, Western Science, Kung Fu and Medical Qigong.
Michaela started to slowly practice some Wisdom Healing Qigong that I had been practicing for a few years, however this practice was too fast for her and she followed this instead. Wisdom Healing is a “branch” of Qigong that is similar to Zhineng Qigong. The slower practice I linked to is Zhineng Qigong. She found that when she practiced this, her body felt better. The energy started to integrate better and she was able to breathe easier. One of the practices is called “Lift Chi Up Pour Chi Down” which is a series of movements done very slowly and looks similar to Tai Chi. There is also a Sound Healing practice that Michaela incorporated from Wisdom Healing Qigong, however she was experiencing burning in her internal organs so badly that she only listened to this practice rather than doing the sounds herself. These two practices became her main focus for healing along with the eye exercises Dr Dan Stoot had given to her.
When she went back to see Dr. Dan for her second appointment, he couldn’t believe the amount of progress she had made. He told her none of his other patients made such progress in one week and asked what she was doing. She told him about her breathing exercises, Lift Chi Up Pour Chi Down and Sound Healing practices. She still had so many symptoms and issues occurring, but to know she had made progress gave her not only a boost of hope, but also a commitment to continue with Qigong.
We knew of a few local Qigong practitioners and asked them for suggestions of Zhineng Qigong teachers. Michaela began to pursue several Qigong practitioners across the world and began having conversations with them about what she was experiencing, and asking if they knew of anyone who had healed themselves from Dysautonomia. Each person she spoke with would give her little nuggets of wisdom, but the only person she found who had healed herself was Dr. Cynthia Li who wrote Brave New Medicine. Dr Li also incorporated Wisdom Healing Qigong into her own healing journey. Michaela had read her book, and reached out only to find that Dr Li wasn’t taking any new patients. That didn’t deter her. Instead, she continued her quest to find someone who could teach her more about healing herself.
By the end of April, Michaela began practicing Qigong and Sound Healing for a total of 3 hours per day, mainly because that’s the amount of time these practitioners said they practiced in order to achieve health after a serious medical issue. She was willing to do anything to get better.
Despite doing the eye exercises that Dr Stoot gave to her, Michaela’s eyes weren’t getting better enough for her to feel comfortable driving. Dr Stoot suggested that she go to a Neuro Ophthalmologist, however once again these doctors aren’t in any insurance network, and private pay was required. Instead, she saw a “regular” ophthalmologist about her vision issues. All of his testing showed there was nothing wrong with her eyes. While you certainly don’t want to wish for an ailment, it would have been nice to have some diagnosis for specifically what was going on!
She found a practitioner for Rapid Resolution Therapy (RRT) to begin to resolve her Medical PTSD and to decrease her overall anxiety. Michaela’s issues with the medical establishment needed to be overcome in order for her to be able to have blood draws where she didn’t end up in a panic attack. This therapy did help her anxiety to calm down, and it also provided the opportunity for her to be able to notice what she was thinking when her body and nervous system began to ramp up.
Michaela was continuing to have digestion issues, blood pressure issues, an inability to control her body temperature, and urinary problems. A Google search on various types of Dysautonomia came up with a diagnosis called Autonomic Neuropathy that included these issues and more. While she didn’t have a formal diagnosis for this condition, it was helpful to have a name to call the constellation of symptoms that she was experiencing. We noticed that many of her symptoms she was experiencing came back to the Autonomic Nervous System, and it was evident that her nervous system was not responding appropriately.
She has begun to see a Medical Qigong Doctor candidate in Denver, Dina Rifkin, who even comes to her apartment! Dina began to teach her specific moves to help a specific organ. This type of Qigong is different from what Michaela was practicing, in that Medical Qigong can work with healing specific medical issues. Dina has healed herself from several chronic illnesses, which was the kind of experience that Michaela was looking for, in addition to Dina’s knowledge about Medical Qigong.
The process has been VERY slow because Michaela’s body overreacts to any type of stimulation, even when it’s good for her. She is given a few exercises to do each day, and has had to restrain herself from being an overachiever and doing too many. She tried that a few times and overwhelmed her body into a detoxing mess.
She has continued to visit the Network Chiropractor to integrate the energy in her body, and that has definitely helped her nervous system to calm down. It has been wonderful for her to get out of her apartment once per week and also to come back home feeling calm.
Michaela has also begun to work with a Zhineng Qigong teacher, Reyna Lerma, to perfect her form with Lift Chi Up Pour Chi Down in order to get even more energy healing from Qigong.
As of this writing, she has been practicing 3 hours of Qigong daily for 80 days, and she has seen enormous progress:
No more heart palpitations
She can sleep a full night from 9:30pm to 6:30am (and she keeps on this schedule!)
No more blood pooling
No more hot and cold extremities
No more fainting
No more paralysis of limbs
No more suicidal thoughts
No more brain fog
No more flushing or hot flashes
She can use computer and phone screens to work, watch movies, search Google and be on Zoom
She’s able to work at least 3 hours a day with ample energy
Her menstrual cycle lasts 7 days instead of the entire month
She can also now sit outside under her favorite tree and enjoy the sun and the Rocky Mountain fresh air.
She still wants to heal these next items, and feels sure that they will heal as she continues her pursuit of Qigong practices and energy healing:
End the idiopathic hives
Heal her gut so that she can eat a wide variety of foods again
Cease the eye issues so that she can drive
Be completely rid of organ burning/buzzing feelings
Have enough energy to work as much as she wants!
I will keep you updated with her progress. The amount of healing that she has experienced surpasses anyone that she has spoken to on social media in the various groups for long-haul COVID or Dysautonomia. Her goal in this quest to heal herself is to not just manage these many complex symptoms but truly heal the cause which created these symptoms in the first place. And then to share her experiences with anyone who is interested.
She has yet to meet anyone else who is using Qigong to heal themselves from these conditions or long-haul COVID, but this may become the only modality that can truly provide relief for the millions of people suffering and looking for a way to get back to their life!
To read the next installment in Michaela’s healing journey from Long COVID go here.
My grown daughter, Michaela, was diagnosed with COVID in November 2021, which I wrote about here. COVID is a wily foe, and while we all hoped that she would recover as her brother, Morgan, did (which I wrote about here) – her path was much more harrowing.
After recovering from the acute stage of the illness, she returned to her remote work – business and life coaching of several clients over Zoom – yet she noticed that her eyes had difficulty looking at a computer screen. She chalked it up to being tired, and moved forward.
She also got back to Salsa and Bachata dancing. However, a few hours of dancing wore her out for a week! This was not her usual level of fatigue. She was accustomed to dancing for hours several times a week, plus working, hiking, and numerous other activities without ever feeling tired.
Food was also still an issue. She kept noticing that her stomach was still not tolerating foods very well, and everything still had to be cooked. She limited her variety of foods, no longer ate any fruit or vegetable raw, but still had acid reflux frequently.
After one family gathering for Morgan’s birthday, she got what she thought was food poisoning. Yet, no one else at the party got sick, and she realized that her stomach was worse off than she thought. She wondered if cooking a spaghetti squash in her brother’s oven ended up exposing her to juices of other foods. That small amount of cross-contact caused a firestorm in her gut, which meant that her stomach really hadn’t improved after the COVID virus.
Getting together with friends, she would feel fine before she left her place only to arrive at a designated location feeling exhausted. Once there, she realized that she kept asking the same question again and again. What was wrong with her brain? Why couldn’t she track conversations like she previously could? She loved being with people, yet now the noise and the interaction felt overwhelming.
Then came the hot/cold temperatures of various body parts. Her feet would be cold, and her hands hot. She’d never experienced this before. She was using Chinese herbs on various acupressure points trying to calm down her entire system, and the results weren’t what she wanted. It seemed like each day she was battling with weird symptoms that she’d never experienced before with MCAS. The herbs and creams previously calmed down any mast cell degranulation, but they couldn’t touch the symptoms she was now experiencing.
In mid-February 2022, she went outside for a walk. It was a cold evening, but nothing that she hadn’t experienced before, hiking in Colorado. She went on a walk near her apartment, and suddenly realized that her body needed to get home right away. She felt panicked at the thought of being outside. After arriving at home, she was feeling really anxious and felt like it was extremely difficult to breathe. She called me almost unable to get the words out. She told me her heart was racing, and she didn’t know what she was feeling. The main thing she did say was, “Don’t take me to the ER.” With her last experience of having 2 grand mal seizures in the ER after an IV push of Benadryl that was too quick, she now has what we have learned to call Medical PTSD (post traumatic stress disorder).
I chalked up her current situation to another MCAS storm. I suggested she take 2 Benadryl, and I stayed on the phone with her until Morgan got to her apartment. He took one look at her and said, “She’s having a panic attack. I’ll stay with her overnight.” He ended up staying that night and through the next day, and she still wasn’t doing well emotionally by early evening. The strange physical symptoms came and went, but she was so disoriented with what I’ll call brain fog, it was difficult to have a conversation with her.
Looking back now, I wish we would have taken her to the ER. She was so adamant about not having an IV put into her, that I didn’t want to create any more stress on her body. We didn’t realize until a few weeks later that she wasn’t having just an MCAS storm. Hours of Google searching helped us determine she was also having post-COVID syndrome, or long-haul COVID, or whatever term you want to call the myriad of symptoms that people have after having COVID.
Her body seemed to have gone over a threshold with the panic attack. She began to experience numerous symptoms that came and went daily: heart palpitations occurring dozens of time an hour, and especially when eating; blood pooling in one limb or one side of the body but especially in her torso; an inability to lie down without feeling she couldn’t breathe making sleep difficult if not impossible; hot and cold extremities; a buzzing sensation throughout her body and in her organs; brain fog so severe that it was impacting her ability to communicate with friends or family; nausea especially when looking at any type of computer or phone screen; vestibular issues such as dizziness which made it impossible for her to drive a car; burning organs; burning skin; an inability to take any medications because of side effects like extreme anxiety; panic attacks that lasted hours; depression to the point of producing suicidal thoughts; gastrointestinal issues where she could tolerate eating very few foods; hot flashes and flushing; hives that appeared out of nowhere; and her menstrual cycle lasted the entire month. Basically, she couldn’t eat, couldn’t work at the computer, and couldn’t drive.
Some of the scarier symptoms like fainting and a paralysis feeling also occurred. The paralysis would occur frequently in the middle of the night where she felt like she couldn’t move a limb and had to pick it up. This morphed into neuropathy where she would feel lightning bolts/electricity run through various parts of her body, and numbness at night.
Working became much more difficult. She got helped from the Colorado Center for the Blind to have Siri programmed on her phone and computer to take directions from her so she wouldn’t have to look at the screen. She did her coaching through the phone instead of Zoom, but it was very difficult to keep notes and keep her brain functioning.
She tried to get in to see her Primary Care Physician (PCP) with her new insurance. Since she was a new patient, he was unable to set an appointment with her for 6 weeks! In the meantime, she got in to see a new allergist with her new insurance network. He listened to her and said that all of her symptoms were caused by anxiety, and if she got that handled, she’d be fine! You can imagine how awful that made her feel.
She saw an acupuncturist who overamped her system, and ended up creating more issues than she was helping. After just a few treatments, she could no longer tolerate the Chinese herbs and creams that she had been using, and she lost one of the 3 foods she was eating. The acupuncturist didn’t understand how to help Michaela in a gentle or any meaningful way. It was so frustrating trying to find someone to help her manage all of these symptoms she was experiencing!
I looked up post-COVID clinics located in Colorado at a website called Survivorcorps.com. This is a group of long-haulers providing resources and supporting research about post-COVID issues. I found that UC Health had a clinic, however when Michaela called them, they said they only took patients who had been in intensive care in the hospital. National Jewish Health also has a clinic; however, they wouldn’t take her insurance, and said that the initial appointment would be $650 and then blood tests and any other test ordered would be paid out of pocket. That wasn’t doable! The post-COVID clinic in Boulder that was listed didn’t take any insurance. Everything was private pay.
Michaela went to the last clinic listed in the Denver area in Westminster. It was a 45-minute Lyft ride from her apartment. She had a one-hour intake appointment with a physical therapist, who pronounced her 98% disabled because of her inability to eat, work or drive. Michaela said she wasn’t there to be declared disabled. She was there to get help and wanted some exercises or something to help all of her symptoms! The PT said Michaela would have to come back the next week since it was time for her lunch break. Frustration was mounting at this point. There were a lot of tears at this point, on my part and for Michaela. These so-called post-COVID clinics weren’t there to really help patients!
It was so difficult for Michaela to garner the energy to go see these doctors, then pay for the transportation or have a friend drive her, only to be dismissed without any real help. She lives alone, and her friends had trouble understanding that she wasn’t well, especially because she wasn’t able to adequately communicate with them what she was experiencing. People had their own lives, and weren’t always available to drive her places, help her do laundry or get food.
My husband and I live an hour south of Denver. We were talking with Michaela several times a day, and sometimes having a call with her in virtual silence to just be a voice at the end of the line when she was having panic attacks that literally lasted all day. We were helping her get food delivered (you have to look at a computer screen to order food!) or bringing food to her. Morgan was also helping with food deliveries and other emotional support.
These were harrowing days, filled with trying to find some medical professional to help her, while also trying to keep up with our own schedules. One Sunday when my husband got back home from visiting Michaela in Denver, he asked me to take him to the ER since he was experiencing chest pains. He ended up in surgery the next day for cardiac catheterization and received 2 heart stents. Thankfully, he recovered fully, but the stress was getting to all of us!
My husband, Robert, and Michaela, who smiles despite all of her challenges!
Michaela was seeing a Network Chiropractor who was helping with her symptoms and then he overamped her system and she experienced back pain and anxiety. She stopped for a few weeks before going back to see him and to ask for very gentle entrainments. I picked her up weekly for this doctor appointment since it became the only modality that was helping her to feel connected with her body. And he was the only provider who was listening to her, and honoring what she was experiencing. He was honest about what he could help with because he didn’t understand long-COVID, but he did understand integrating energy in the body and he would work with her on that.
There are a few concierge doctors taking on long-COVID patients that we found across the US; however, new patient appointments were months or even a year or more out into the future. And everything was private pay, starting with $3000 for an initial appointment. That wasn’t going to help Michaela navigate her symptoms and her life today.
This is now the beginning of April – about 6 weeks since February’s major panic attack. She finally got in to see her PCP who diagnosed her with long-haul COVID, and ordered up numerous blood tests which all came back normal. This was not a surprising development, as we had been researching online for weeks at that point, and heard that normal blood tests were common. What was surprising was that the PCP told Michaela that she wasn’t his “kind of patient” since he was a family practice. She had chosen him because he was near her apartment which made it easier to get to him since she wasn’t driving.
I have never been so disappointed in the American healthcare system than I was at this point. It is absolutely appalling and one can feel so powerless with the never-ending rules, personalities, and unmet expectations one has to navigate, only to be let down in the end. What is a patient supposed to do when every avenue within western medicine closes them off?
Sadly, we have come to learn that Michaela’s story is very common in the long-haul COVID world. Many of the blood tests that western medicine doctors order aren’t the tests that will show what COVID has done to the immune system, vascular system or brain. And for anyone who has a chronic illness, western medicine is sadly lacking in physician appointment time to truly delve into a patient’s experience and history. Doctors are trained to look at the data from blood work or other tests and then prescribe a pill.
Long COVID doesn’t provide data in the western model, so doctors succumb to the easiest way to get the patient out of their office in the 15 minutes of allotted appointment time – tell them it’s all in their head: “Get your anxiety under control” or dismiss the patient outright: “You’re not my kind of patient.” In other words, the doctor is saying, “I don’t know what to do with you, so this must be your fault and not any lack of training or compassion on my part.”
This frustrating situation gets better because of Michaela’s tenacity and resolution to heal herself. Here is the next blog post about her extraordinary journey on the path to healing!
For those of you new to reading my blog, I wanted to provide a little history of MCAS in my grown daughter, Michaela, prior to getting to the topic of COVID.
Michaela got a diagnosis of MCAS shortly after I did about 10 years ago. We noticed how she was experiencing many of the same symptoms that I was with gastrointestinal issues, but she also had symptoms of interstitial cystitis, which her grandmother had been diagnosed with.
MCAS is a constant balancing act, and it can affect virtually any organ in the body. For Michaela, her thyroid, bladder, stomach and intestines are most frequently compromised when mast cells begin to degranulate.
She got placed on a variety of medications from a Gastrointestinal doctor including Zyrtec, Zantac (when it was still on the market), Ursodiol (alters bile for less histamine release), and Ketotifen. She never felt great on all of these medications, especially since her body continued to have ongoing inflammation evident in general swelling of her gut.
She took on her own healing, especially after a harrowing episode of two grand mal seizures in the ER, which occurred after getting dehydrated and having a mast cell flare. You can read about this scary episode here. After the seizures, and having aspiration pneumonia, she added lungs to her list of compromised organs. Her lungs would react to chemicals especially and she had to be very careful of what she was being exposed to.
Prior to COVID, Michaela had gotten her mast cells managed quite well through a completely organic diet of vegetables and fruits (cooked and raw), meditation, Network care (a type of Chiropractic practice), Traditional Chinese Medicine herbs, and plenty of Salsa and Bachata dancing! She no longer needed to take any “Western Medicine drugs”, and had been off of them for over a year when diagnosed with COVID.
She no longer had inflammation in her body, and had lost 30 pounds just through healthy eating, dancing and enjoying life with plenty of laughter and friendship. She is convinced that especially the Zyrtec and Ketotifen had created more inflammation in her body than it helped to decrease. She was feeling better than she had felt in years. And then came COVID.
It is important to state that Michaela decided to not get a COVID vaccination due to her extreme reactions to chemicals, and her sensitivity to anything being put into her body.
After 18 months of social distancing, mask wearing and very little dancing, she got to celebrate her 31st birthday in November 2021 with a test for COVID. The pre-birthdate party she celebrated with her friends became just one of the positives she experienced – the other being the results of the PCR test.
She awoke a few days after the party with a severe migraine, which is not a usual symptom of MCAS for her. Similar to the symptoms that she experiences with a MCAS flare, COVID began to create gastrointestinal issues. She was virtually unable to tolerate eating anything because of acid reflux and nausea for about 10 days. She kept hydrated with mineral water, and never had any lung involvement, which was a relief. She barely even had a cough for the entire illness, and the fever only lasted about 36 hours and wasn’t very high. She did have fatigue, but was prepared for that since we had heard that was a normal symptom of COVID.
She had some strange symptoms like very painful skin that almost felt like it was burning, and it was difficult to take a shower. Some of the TCM creams helped this. So the “usual” COVID symptoms weren’t at all what she was experiencing, but she definitely had COVID and her gut no longer would tolerate the variety of foods that she had previously been able to eat. She couldn’t eat raw foods, like apples, anymore. Everything had to be cooked, and food didn’t taste good once she lost her sense of taste and smell.
It was a rough illness but she didn’t require hospitalization, and didn’t even need to go to the doctor. She did reach out to Dr. Xiu-Min Li, our Traditional Chinese Medicine doctor, to inquire about what she could do for her immune system to help it fight the infection and get back to normal. Dr. Li suggested various herbs in patches placed on specific acupuncture points, and that helped a lot.
The acute infection lasted for 10 days, and yet she still had chronic acid reflux that wasn’t helped by Pepcid. A half dose of Pepcid created a mast cell storm that was very uncomfortable and included sweating, nausea, and a feeling of almost passing out. So, Pepcid was out of the question. Overall, though, she felt like the worst had passed and was ready to get back to her “normal” life.
Our family was able to celebrate Michaela’s birthday and Thanksgiving the first weekend in December. What we didn’t know then was that the end of the acute illness was the beginning of another path that became quite scary and weird, with new symptoms and ongoing fatigue, and a journey that Michaela continues to forge a path through. The continuation of her experience and her path back to health is shared in the next blog post here!
Now that my son, Morgan, is a 25 year old man he is making the informed decisions about all aspects of life, including choosing allergists, physicians and whether to receive a COVID vaccine.
I feel secure in the knowledge that he is fully capable of making these decisions, and it’s really wonderful that he and I can still talk through them meaning he still values my input, at least a little!
Morgan’s history with vaccinations is problematic. He received an MMR vaccine at 15 months old, in 1997. Because he had reacted to touching peanuts previously, and had never eaten eggs, we remained in the waiting room for 20 minutes. Nothing appeared there, however he later reacted by swelling to the point his eyes shut, and his entire body swelled into what I called an alien for 3 days. It was frightening. During the doctor visit, our pediatrician referred us to an allergist while saying, “Morgan is having more allergic reactions than I know how to treat!”
Several years later, it was time to get a Chicken Pox vaccine which we had delayed. With his eczema, our allergist suggested that the vaccine would be preferable to him having what would likely be a more serious case of chicken pox. We went to her office to have the vaccine administered gradually in increasing dosage amounts, and he appeared to do fine. However, 6 hours later he began to vomit every 15 minutes.
He became severely dehydrated, and we took him to the emergency room. They had to re-hydrate him through an I.V., and he remained in the ER overnight. For the next two days, he was horribly ill. Our allergist is convinced this was a reaction to the shot. He never exhibited hives, yet we learned that allergic reactions can take on many different symptoms.
Fast forward to heading off to college. The Meningococcal vaccine was required for those students living in the dorm. Both our pediatrician and our allergist said let’s wait on this vaccine, and our allergist provided a medical exemption. If the illness had shown up on campus, we would then get Morgan vaccinated. Thankfully, that never occurred.
For those of you who read this blog frequently, you will remember that Morgan had COVID-19 which I wrote about here. Since no one yet knows how long the immunity lasts, and because he would like to once again travel, Morgan began to look into getting the COVID vaccine.
He did his own research to find out that today’s Chicken Pox vaccine appears to use some of the same preservatives as the one used in the Pfizer COVID vaccine. He was also aware that a few individuals in Britain who had diagnosed food allergies were experiencing anaphylaxis to the Pfizer vaccine, generating a warning from the British medicine regulator stating anyone with a history of anaphylaxis to foods or medications to not receive that vaccination. However, the United States Center for Disease Control states that the “CDC recommends that people get vaccinated even if they have a history of severe allergic reactions not related to vaccines or injectable medications.”
The Johnson & Johnson vaccine looked like a better alternative, and it was only one shot. Morgan discussed this with his new allergist, who agreed that this was the best choice for him. She also liked this shot because he had had a case of COVID. She suggested that he obtain the vaccine in a hospital environment, and to remain there for at least 30 minutes after the vaccination.
This past week, Morgan received the vaccination! He was prepared to have some flu like symptoms, especially since his boyfriend, Quinn, had received the J&J shot and experienced some symptoms for about 24 hours. By the evening of the shot, Morgan began to feel body aches, and had a rough night sleeping. He felt a little nausea, but by 48 hours after the shot he was feeling back to normal.
Hooray for a positive outcome! He’s especially looking forward to traveling, and is already preparing for his first trip now.
A recently published article by Dr. Lawrence Afrin, the author of Never Bet Against Occum: Mast Cell Disease and the Modern Epidemics of Chronic Illness and Medical Complexity, and two other mast cell doctors, have found a consistency of symptoms of Mast Cell Activation Syndrome (MCAS) and those of “long-haul COVID-19”. They also postulate that those patients with severe COVID-19 symptoms of hyperinflammatory cytokine storms may in fact have undiagnosed MCAS, a chronic multisystem inflammatory disease.
If you are not familiar with the illness of Mast Cell Activation Syndrome, it is a beast of an illness to live with and to diagnose, mainly because the symptoms can look like so many other illnesses. (I have written a series of informational articles about MCAS here. )
For some people, the symptoms of MCAS aren’t enough to actually seek medical care. They may have an occasional stomach ache, or rash, and have never needed to become a detective to determine why they were able to eat blueberries, for example, last month and this month their stomach hurt horribly after eating them. Or the few hives that they get in the autumn season aren’t enough to bother them. Yet underlying these symptoms and others, the body’s mast cells are overreactive, while the person will declare themselves perfectly healthy. Then, when the body begins to fight off a virus such as COVID-19, the body overcompensates its response to the viral load and releases thousands of chemicals (cue the cytokine storm) that end up doing more damage to the body than the virus itself.
SARS-CoV-2-Reactive T Cells Found in Patients with Severe COVID-19
Recent statistics regarding COVID-19 suggest that only 15-20% of patients will experience a severe form of the illness. It is interesting to note that previous research on the prevalence of MCAS in the developed world is 17%, with the abundance of individuals unaware that the symptoms they are experiencing are in fact from mast cells acting abnormally.
Any virus would call forth a response by mast cells in order to heal the body. The problem with MCAS individuals who remain undiagnosed and therefore untreated, is that their mast cells are dysfunctional and react inappropriately to COVID-19 causing thousands of chemicals to be released into the body.
Fatal cases of COVID-19 are frequently caused by cardiovascular conditions, and heart damage has been one of the frequently cited long-term affects of the illness. Mast cells play a significant role in cardiovascular complications seen with COVID-19 such as pulmonary embolisms. Additionally, mast cells patients frequently cite “brain fog” as one of their symptoms, a common complaint of long-haulers with COVID-19.
Fatigue is a classic symptom of MCAS, frequently made worse by insomnia. Once again, these are common complaints of individuals who are still experiencing symptoms months after being diagnosed with COVID-19. In the research report, the doctors provide a table of symptoms by organ/system comparing MCAS with COVID-19 patients. The similarities are striking.
For individuals in the midst of the virus, doctors are finding that medications used to mitigate the symptoms of MCAS, inhibiting mast cell activation, are also helping COVID-19 patients: cromolyn; leukotriene inhibitors, dexamethasone, low-dose naltrexone, quercetin, and H1 and H2 blockers (antihistamines such as Zyrtec and Pepcid). These drugs might mitigate the severity of the illness, helping patients to not progress to the severest form of the disease.
An interesting note in the article concerned MCAS patients who had been previously diagnosed and were being treated for their mast cell activation. When these patients tested positive for a COVID-19 infection, all fared well enough that the doctors stated that “none have required mechanical ventilation, let alone died”. Their conclusion was that the patients had their mast cells at least partially controlled so that they did not suffer the most severe courses of the disease, but that they were still at increased risk for suffering from the post-COVID-19 illness.
For those of us with a diagnosis of MCAS, the volume of research that is currently occurring on COVID-19 will undoubtedly help us to have more understanding of our illness. And hopefully, a cure!
I don’t know about you, but some days I definitely am suffering from Covid-19 fatigue. When we were under “Safe at Home” orders in Colorado back in March, and for the subsequent 6 weeks, each day felt like an eternity! I couldn’t keep track of what day it was because every day felt like it lasted a week, and I just kept hoping for some good news and an ability to go back to “normal.” Normal was being able to find the foods I needed to purchase without having to visit five grocery stores! Normal was being able to go out to the movies, go to the gym, and get together with my Qigong practice group in person. I’ve come to the conclusion that whatever we get back to won’t be like the previous normal but maybe we can get to a new normal. The Covid-19 pandemic has become a dividing line of a life before and after.
This is similar to how I felt when our son, Morgan, was diagnosed with life threatening peanut allergies. There was life before peanut allergies, when we could eat anywhere and eat anything. And then there was life after, when every bite had to be monitored and every label read. It was a demarcating line in our lives. Adding each new food allergy diagnosis didn’t make as much of an impact on our daily lives as that first allergy.
This kind of understanding helped our family to roll along with the pandemic a little easier in some ways, and we had a little bit of rough roads in other ways. We aren’t yet to the after the pandemic. It’s the during stage that we’re currently experiencing. And who knows how long this stage is going to last. We’ve learned some lessons that I want to share with you, and maybe you’ll have a few lessons you can also share with me!
Lesson #1: Have safe foods on hand always!
My husband, Robert, and I tried to get N95 masks in local stores and on the internet in February 2020 to no avail. Everywhere we checked was sold out. We finally found a few masks through Ebay, but this sparked my husband to suggest that I’d better get a stockpile of my safe foods, since it was clear to him that people were fearful and that makes for interesting buying choices!
With my diagnoses for Mast Cell Activation Syndrome (MCAS) and Eosinophilic Esophagitis (EoE), I am currently eating just four foods (all organic) – chicken breast, turkey breast, broccoli, and frozen Cascadian Farms hash browns (for some reason I can tolerate these but not fresh russet potatoes). I’m so grateful that Robert suggested that I get more of my foods on hand before others began to hoard food products. I was able to purchase a month’s worth of these groceries for myself, which allowed me to continue to eat when limits on the numbers of chicken packages, for example, were placed in most grocery stores in our area. Since February, I have kept a constant supply of one month’s worth of groceries in the freezer. I rotate the foods each week as I purchase new items. I will continue to keep this stockpile of safe foods for as long as the pandemic continues, just in case there is more hoarding or limitations on purchases in the future.
Lesson #2: Befriend your grocery clerks when you have special food needs!
For the last several years, I have been purchasing the frozen hash browns at my local Natural Grocers. I became good friends with the purchasing manager and the receiving manager since I had a standing special order of 2 cases that they ordered for me weekly. By late March, their corporate headquarters was no longer allowing special orders, which was very disappointing.
Despite my explanation to the store manager, and my years of purchases, he was unable to guarantee that I’d be able to purchase 2 cases at a time and unable to even know if they would be receiving hash browns on a weekly basis anymore. However, the receiving manager was willing to put aside every and any case of hash browns that were received and hold them for me, unbeknownst to his manager. Having a good relationship with him, and explaining my medical condition, allowed him to better understand what I was managing.
At one point, I called in to the store to see if the receiving manager had any potatoes set aside, and when he said yes, I told him I was so thrilled that I’d ask him to marry me if I wasn’t already married! He said, “I’m married too, but you can still ask me!” And I did! We laughed and laughed at the absurdity of the situation, and it took months for him to regularly received these potatoes again, forcing me to scour stores from Colorado Springs to Denver to try to purchase as many frozen hash browns as the store clerks would allow me to purchase.
Lesson #3: In a pandemic, don’t expect special treatment!
Many times I would head to a grocery store register only to have a checkout clerk tell me that I wasn’t allowed to purchase so many packages of the same product. Despite having a letter from my allergist explaining the few items that I can eat, and his request to please allow me to purchase what I needed for one week, the clerks and even store managers , would say no.
One time, I received a special order for the turkey breast that I had purchased for years at a local King Soopers, again on special order. I would generally pick up 12 packages at a time every two weeks. Again, I had two meat department employees who were so good to me, and we had become friends. They knew what I was experiencing trying to get my safe food, and would continue to make special order requests for me. Yet, when I got to the front of the store to pay, the self-checkout clerk began screaming, “You can’t buy that much meat. Don’t you know there’s a pandemic going on?” Again, no amount of explanation or doctor’s letter was going to cease her yelling. So, I purchased the two small packages that she would allow me to purchase, and went home.
When I told my husband what happened, he was incensed and went back to the store. He spoke with the meat department manager who said to take the other 10 packages to the front of the store to purchase them, and tell the clerk that if they had a problem to contact him. Wouldn’t you know that he had no trouble purchasing all the meat without any issues!
Lesson #4: Be willing to break some rules!
I can’t count the number of times that I left the grocery store to go to the parking lot with my allotted amount of chicken or frozen hash browns and put them in the car, only to change my jacket and mask and head back inside the store to purchase more of the same items up to the limit allowed.
Many times I’d go to my regular stores and find no supply. I’d end up driving to numerous stores around the city just to get enough food to refill my stash for the week, if I could even find the items. I wasn’t willing to eat down all of the food I had in the freezer for fear that the distribution issues could continue long after my supply ran out. Those “safe at home” orders suggesting that we only grocery shop once a week weren’t going to work for me.
I generally am a rule follower, and I understand not purchasing massive quantities of toilet paper, for example, so that everyone can have their fair share. However, when you’re talking about being able to eat at all, there were some rules that were going to be broken in order for me to stay alive!
Lesson #5: Be willing to ask for help finding your special foods
There were a few weeks where I couldn’t find my potatoes anywhere in Colorado Springs. I asked my daughter, Michaela, who at the time lived in Lakewood, a suburb of Denver, to check around for me. She graciously searched and found a case worth, but then had to take the packages to our son, Morgan’s apartment since her freezer wasn’t large enough to accommodate this grand prize!
Michaela also has a diagnosis of MCAS and eats only organic fruits and vegetables. She was having difficulty finding foods at one time in Lakewood, so we found some safe foods in Colorado Springs and made a rendezvous midway to exchange foods.
I also had wonderful neighbors who were willing to pick up 2 packages of organic chicken for me when they went to the grocery store if they found any. People who don’t have such strict diets are free to eat a variety of items, and were so helpful in offering to make purchases to keep me fed.
At this point, I’m flush with all of my foods and haven’t had any difficulty recently being able to purchase everything that I need.
I continue to express gratitude every time I’m able to easily find the foods that I eat, and I’m especially appreciative to no longer have to be sneaky in order to keep myself fed!
My son, Morgan, and his boyfriend, Quinn, returned from their vacation in London on Monday, March 16. If you haven’t read about that challenging return to the US, you can read about it here.
Both young men went home to self-quarantine after their return. During the trip, for a few days Quinn had been experiencing symptoms of fatigue, muscle aches, and a very low-grade fever, then he’d feel better. Since there was no way to get a COVID-19 test in England or Scotland during their trip, he just continued to enjoy the trip.
Morgan lives alone in an apartment in Westminster, a suburb of Denver, CO, while Quinn lives alone in Arvada, another suburb. Morgan felt sure that they had been exposed to the COVID-19 virus during their travels since they had been in planes, trains, automobiles and the Tube in London! They did their best to wash their hands and use the hand sanitizers available in many locations, however the nature of travel ends up with frequently being in crowds.
Morgan’s boss at the Longmont Economic Development Partnership had a baby while he was in London, and he returned to work early Tuesday morning handling not only his workload but hers also. His days were very long that first week back at work with numerous online meetings on the impact of the coronavirus on the local economy.
On Tuesday, March 24, he awoke with body aches, especially in his legs. At first he thought it could be from the yoga he did the previous day. Then, when he spoke with Quinn, he discovered that Quinn had been experiencing not only a stuffy nose but also a sensation of not being able to taste his food, which come to find out is apparently a strange symptom that many people with COVID-19 are experiencing. At that point, they were both convinced that they had the virus.
Day 2 of the virus, Wednesday, brought more of a tight chest for Morgan. He had been taking his inhaled steroid, Qvar, once per day but decided that he needed to check in with his primary care doctor to see what his next step should be and how to obtain COVID-19 testing. UC (University of Colorado) Health is a large network of hospitals and doctors in Colorado. They are providing telemedicine information and appointments for anyone with symptoms of the virus, in order to keep patients at home. Morgan called in to see where he could be tested for the virus and what he should do about the tight chest since he is diagnosed with mild asthma. He was told that there was no testing available in Denver unless he was hospitalized. As for the tight chest, the nurse with whom he spoke suggested that he increase his Qvar to twice a day. She also discussed what he should do if his breathing got more labored or he experienced wheezing, which was for him to call in for a telemedicine appointment with a doctor, who would likely prescribe Albuterol for his nebulizer. He was still working from home during all of this, trying to balance his need to rest with the workload.
As for Quinn, he didn’t have any new symptoms. He has no underlying health conditions, having outgrown asthma during puberty. He never has any issues with breathing troubles with a cold or illness. His strangest symptom was not being able to really taste his food. He was able to continue working from home all week without any fatigue or other symptoms.
Day 3 brought on a fever for Morgan who awoke with a general malaise, and a cough. When we spoke with him that evening, he sounded thoroughly exhausted. He had called back in to UC Health, in the middle of managing meetings for work, to request another telemedicine appointment for the next day, Friday. My husband and I hung up the phone quite concerned that the virus was really affecting him, and still clinging to the hope that he’d be able to stay in the “moderate” area of the illness. I posted on Facebook about both Morgan and Quinn having the illness and was pleasantly overwhelmed by the loving response of so many friends and family members concerned and sending prayers.
Day 4, March 27, was a lovely surprise to find Morgan feeling better. (My husband and I have a routine going where we talk with him every morning and evening!) He had decided to take the entire day off from work to rest, which in Mama Bear’s mind was a very good decision! He refrained from taking Tylenol the previous night, which he says upsets his stomach, and allowed his fever to spike through the night. He was up at 3 am taking a shower from sweating so much. But all that sweating helped him to feel much better on Friday morning. His cough was more productive sounding, and his energy was certainly better. I’m convinced all the positive energy coming from everyone also helped! His conversation with the doctor later in the day via telemedicine did not yield a prescription for Albuterol for the nebulizer. Instead, she suggested using a spacer and upping the Albuterol to 2 puffs, every 4 hours as a first step. It appears that doctors are trying to take small steps in fighting this illness to still have more available actions to tackle a worsening condition. We breathed a sigh of relief that his body was fighting off the virus, and by the evening he was feeling about the same, which we took as a good sign.
Day 5 is today, and his condition appears to have stabilized. He continues to say that he feels about the same. He is planning on resting all day today and tomorrow since it’s the weekend. Morgan hasn’t had to use the Albuterol inhaler at maximum dose because he has gotten relief from using it just a few times daily. The chest tightness has dissipated, and his cough didn’t even keep him up at night. He still has a slight fever that comes and goes. By the evening, however his cough was to the point where Morgan was having trouble talking without being interrupted with a coughing fit. We could hear him wheezing, which was really scary. He had been sitting in the bathroom of his apartment creating a steam bath for himself with hot water from the shower. He was also taking the Albuterol more frequently that day. We got off the phone that evening really concerned. In the middle of the night, I found myself awake wondering how EMTs would be able to get into Morgan’s apartment building since it is locked with no door person in attendance. I was in a very fearful place emotionally, and barely slept all night.
When we spoke to Morgan the next morning, Day 6, we decided to do so on FaceTime so we could see what he looked like. The telephone doesn’t provide as much information, we discovered, as being able to look into his eyes and to see how he was feeling. And thankfully he seemed to have turned a corner for the better. It was frightening how quickly the illness could turn from being stable to being really sick. And from what I read online, people who end up hospitalized for the illness, have on average been at Day 7. With that in mind, we continued to call him every morning and evening on FaceTime to check in over the next several days.
Morgan had several friends offer to get him food, however he only felt comfortable asking his sister, Michaela, to do so because she understands how to read a label for his food allergies (which are peanuts, tree nuts, sesame, fish and shellfish). She was able to get him groceries, dropped them off at the front door of the building while he gloved and masked up and picked them up.
Each day has brought him a little bit more energy, as he started back to work for a few hours building up to working all day by Thursday, April 2, Day 10. As of today, Day 11, he still has a cough, but the fatigue is finally gone. He’s also staying inside his apartment until he is completely free of all symptoms. One of the doctors he spoke to said that he should be free of symptoms for 72 hours before going out in public, and that he should be isolated for 14 days after the symptoms start. At this point, he still has several days to go to reach that milestone.
This weekend, we plan on having a virtual family dinner since we can’t get together in person! My husband’s birthday occurred while Morgan was in London, so we’d like to celebrate that. And we are certainly celebrating Morgan and Quinn both recovering from this illness!
As of now, I would say that Morgan experienced the “moderate” symptoms of the illness, while Quinn has enjoyed a “mild” illness. From what I’ve read, the mild or moderate illness will likely last 2-3 weeks, which doesn’t sound mild to me! And honestly, without either of them having access to a COVID-19 test, we are just assuming that they have that virus and not another influenza or cold-type virus. This is a very small sample size, but there does appear to be a difference in Morgan’s symptoms of chest tightness and coughing than what Quinn has experienced. Maybe that’s the difference in having asthma, since Morgan is prone to having asthma exacerbations with any type of upper respiratory illness.
I am so appreciative for all your wonderful energy in the form of thoughts and prayers for Morgan and Quinn! Stay home and stay healthy!!
If you read this blog frequently, you know that my son has had a planned trip to London since last year. I wrote about this in my last blog post here.
After many discussions, research and the existing environment on March 7th, Morgan and Quinn decided to go ahead with their trip carrying hand wipes and masks along with two backpacks of clothes and traveling “stuff”, and flew to London on Icelandair.
Morgan has flown on this airline several times overseas, and very much appreciates that they do not serve peanuts. This time, he and Quinn had no seatmates because of so many people altering their travel plans. They flew through Reykjavik and got on another flight into London without any problems, and started sight seeing immediately.
Quinn and Morgan In front of Westminster Abbey
They continued sightseeing around London and enjoyed each day, visiting a Botanical garden, a cheese factory and walking the city. Then, on Wednesday evening in the USA, President Trump instituted a travel ban from European countries to be effective 48 hours later, on Friday, March 13 at midnight.
My husband and I almost fell off the couch when we read this notification! We knew that Morgan’s flight home from London went back through Reykjavik, and wondered what that was going to mean for him. We quickly messaged Morgan, knowing that he was likely asleep, and asked for a quick chat in about 6 hours when he would be awake Thursday morning. We got up at 3am to discuss options with him.
By then, it had been announced that US citizens weren’t included in the travel ban, which helped our anxiety calm down a little. Both Quinn and Morgan had been receiving multiple text messages from friends and other family members warning them about this travel ban. Quinn had been trying to get through to Icelandair since they had awakened, however all the phone lines were busy. At this point in England, there weren’t any travel bans; nothing had been closed; and there were less than 500 cases of the virus in the UK as a whole. So, Morgan and Quinn couldn’t quite understand why we were so nervous.
Meanwhile in the US, grocery stores were experiencing people purchasing food and toilet paper as if Armageddon was forthcoming. K-12 schools and school districts and colleges were shutting down, and/or going to online classes. Workforces were being told to telecommute. Every hour there was some new information to digest and to adjust to. We tried to explain all of this to them, and that we’ve never been at this place before with a pandemic affecting not just the US but the world. Given that they are grown men, and paid for the trip themselves, we didn’t feel it was appropriate to pull a “parent directive” to get home now! We believe in supporting our now grown children, and loving them through their choices and decisions. We agreed to talk later in the day before they went to bed Thursday evening.
About 12 hours went by and we spoke again. They still hadn’t been able to reach Icelandair. We began to talk about what other airlines could get them home to Denver if they never were able to reach the airline. What was a safe airline for peanut allergies? Who flies the route directly from London to Denver? We knew we didn’t want them going through a European country if they were traveling after Saturday at midnight ET because of the port of entry issues. Denver’s International Airport was not one of the airports receiving passengers from Europe, and ending up in another US city where they would need to find another flight home to Denver was just too much to contemplate with additional fees, food allergies to manage and potential overnight accommodations needed. They had looked into other airlines’ flight schedules, but many of the seats had been booked at exorbitant prices, and they really wanted to reach Icelandair before paying for another flight. We agreed that they would go to Heathrow airport Friday morning to see if they could get information directly from the Icelandair ticketing agents.
On our Friday morning, which was already after lunch London time, we texted with them. Morgan said the ticket agents were of no help. They had been given no information to pass on to customers, and had no idea if their original return flight going through Reykjavik would be able to land in Denver on Tuesday, March 17. Then as we were texting, Quinn was finally able to get through on the phone to Icelandair. Their flight had not been cancelled even though most other flights flying on March 14-16 had been. This sounded suspicious to my husband and me. How would they have a flight of all Americans and be able to fly directly to Denver? We were ready for them to give up on Icelandair, book a flight with another airline, and get out of London that day! We decided to continue to ask more questions. What happens if the UK is included in the travel ban in the near future? Do you have a backup plan? What happens if you end up in New York or Chicago? We knew that was going to cost money for them to then find a way home to Denver, and to find a safe, food allergy accommodating airline to do so. In the end, they decided to leave Heathrow and keep their reservation on Icelandair to fly home on March 17.
We were really concerned at this point, especially when they said that they were going to continue their trip schedule and travel to Scotland via train, a 4 hour ride, on Saturday morning, March 14 and spend the weekend there. They planned on returning to London on Monday to spend one night in the city before boarding the plane to come home. My husband and I were taking this one day at a time, and that day sure felt like about 48 hours in length. There was so much going on in the news, and our reality was so different from our son’s and Quinn’s.
Then, on Saturday, March 14, President Trump extended the travel ban to the UK and Ireland. My husband has a way of seeing some things that are coming, and he had a feeling this was going to occur. We just didn’t expect it so soon. The travel ban would go into effect on Monday, March 16 at midnight.
We texted with Morgan, who had already seen this information on the BBC. He said, “We will be continuing as planned but know potential changes are in store. Icelandair is posting a full flight list at least a day in advance so we will know, and they will keep us updated. More excitement to come! But we are having a blast in Scotland.” My husband and I are really worried. Their Tuesday flight is after the UK ban goes into effect, and we know they will be landing in a city other than Denver. And likely their flight is going to be cancelled altogether, because you can’t just change the destination city on a whim when flying an airplane.
There have been numerous times in our children’s lives when we have had to let go, and let them “do their life” even when we don’t agree with their decisions. This was one of those times. We were really concerned how Morgan was going to manage his food allergies, how the coronavirus screening was going to be managed, what airport he was going to be sent to, and what the cost was going to be for him to get himself home to Denver.
And then we awoke Sunday morning, March 15, to this message:
My husband and I were jumping up and down in tears, we were so happy! After seeing this message, we saw the pictures online of the enormous lines at the various US airports who were receiving the European flights after the European travel ban had gone into effect. Hundreds of people all crowded together in these long, snaking lines to have their temperature checked. We knew it would be a hassle to be sent to one of these 13 airports upon arrival in the US, but we had no idea it would also put all of these passengers at risk for the virus with a complete lack of social distancing. We were so glad that Morgan and Quinn wouldn’t be subject to that.
The British Airways flight was full when it took off from London 45 minutes late. Mama bear checked the online status to know when to expect his arrival in Denver. We were not going to meet him at the airport since we live 90 minutes away, and with the social distancing requirements that had been decreed in Colorado, we decided to follow the rules and await his text message.
As you can see, my husband and I were more than a little excited to have him back in Denver! In Colorado on Monday, March 16th, all restaurants were closed except for takeout and delivery. Most employers had gone to telecommuting workforces, and the Governor has asked for no meetings of people in excess of 10 persons in addition to shutting down all gyms and movie theaters. Morgan is working from home, and will be self-quarantining for the next week or two since he has been traveling abroad, but currently has no symptoms of the virus.
It was quite an experience to watch our world change so drastically within a week, and to have our son across the world in the middle of a pandemic. I’m very grateful to have him back in Denver!
I’m sure that Morgan will be providing a blog post about his travels and all that he has learned from this BIG adventure. Stay tuned for that in the near future!
The news of the Coronavirus (COVID-19) has begun to get my attention these past few days.
In general, I am not overly worried about the virus and its impact on my son with his well-managed asthma; however, he has been planning to go to London on vacation in less than two weeks. It’s a wonderful opportunity for him to share the city that he loves with his boyfriend, Quinn.
My son, Morgan, is now 24 years old, has mild asthma and multiple food allergies to peanuts, tree nuts, sesame, fish and shellfish. With the US Centers for Disease Control and Prevention official today stating that “It’s not so much a question of if this (coronavirus) will happen any more, but rather more a question of when this will happen and how many people in this country will become infected and how many of those will develop severe or more complicated disease,” I realized that it’s time to have a conversation with Morgan.
Morgan and Quinn have plans to go to Britain for 10 days in March, and everything is planned, paid for and reserved. Waiting for the day to leave was the only thing left do do until this Coronavirus outbreak occurred. Now there are a few more things to prepare for just in case there is an outbreak of the virus in Britain while he is in the country.
Since Morgan is a young man now, Mama Bear here can no longer dictate his life…and truthfully, I never really had that power even when he was young! I thought it would be beneficial for the two of us to have a conversation about the virus, and so I asked him “What have you thought about the Coronavirus and your plans for going to London?”
I must say that I was impressed that he said that he and Quinn have been having conversations about how to stay healthy with hand washing, bringing wipes, and probably wearing a mask especially in the Tube in London where they will be near so many people. Morgan said, “I am nervous to travel. I don’t want to be stupid.” The two are closely monitoring any travel bans, and keeping up with the WHO recommendations and with the BBC for news on the virus in Britain. He recognizes that just like with influenza, his asthma is a health condition that can be exacerbated with the virus and is a cause for concern.
But, it’s now his decision as to whether or not he wants to reschedule his vacation. There are no travel warnings as of this writing for Americans going to Britain, and both of our countries have individuals who have been diagnosed with the virus. Thankfully both countries also have very good medical systems, which from what I have read, has helped those patients who do have a more severe form of the virus requiring hospitalization. And good medical care also keeps the virus from spreading to other individuals.
I have two N95 respirator masks to give to him for their trip. Two days ago, I tried to purchase more of these types of masks, which are rated the best for keeping out small particles including virus germs, and there aren’t any available in my local stores. Every Home Depot, Ace Hardware and Lowe’s is sold out already! I managed to find the masks online only through an individual seller on Ebay and purchased several more for the entire family at a reasonable price. Sadly, many sellers on Amazon.com have increased their prices to double or triple the regular price of a mask, if you can find any in stock.
Morgan has been taking Qvar daily, and has a prescription also to Albuterol. I suggested that he contact his allergist to find out if the doctor has any other suggestions for him especially if he ends up getting the virus here or abroad.
Another item we talked about was what he should do if he were to be quarantined in Britain. These quarantines have begun to hit various cities in numerous countries when an individual gets sick with the virus. People have been quarantined in China, but also in various other countries, and have lasted anywhere from 14 days to a month. With food allergies, not having access to safe foods is a serious issue, and one that requires some forethought as to how that situation would be negotiated in a hotel, for example. Morgan is putting together an action plan on how to manage such a plight. He and Quinn will be staying in an Airbnb for part of their stay and in a hotel for the remainder. It would be a real mess if they spent their vacation locked in a hotel room!
Morgan is going to check into the National Health Service (NHS) to see how an American can access these services should he need to. From his recollection with studying abroad at the University of Lancaster in Britain three years ago, it was fairly easy and inexpensive, unlike the US healthcare system!
There are a few pieces of good news in all of this. First, thankfully the mortality rate is fairly low for this virus versus previous coronaviruses like SARS or MERS. No one enjoys getting sick, but most people are surviving this virus. And secondly, Morgan has another 10 days to gather more information and to watch the spread of the virus to determine whether he will be heading to London or rescheduling his trip!
