The 5th Stage of Grief: Acceptance

 If you have ever lost someone close to you, or been to a recent high school health class, you may hear a discussion on the Five Stages of Grief. They are listed below:

1. Denial

2. Anger

3. Bargaining

4. Depression

5. Acceptance

It has been a week since my last visit to Mayo. It's been a long week with lots of emotions. I would consider this week to reading the last chapter of your favorite book, knowing there is a part two that is releasing in 6 - 8 months. You have eagerness to finish the book, but feel hesitant at the same time. This week was the official kick off to the 12-week program that Mayo has for Post Covid Syndrome patients. 

It begins with two, 4-hour classes with nurses and a small group of people, patients, all ranging with different ages, backgrounds, location, and length of time they have had persistent symptoms. A health coach will give you one on one instruction in how to manage symptoms. I have my first meeting with my health coach this week.

This post is about my acceptance of all the information I received this week. I completed my COVID classes with a small group. The nurses were helpful in giving us information on what Post COVID Syndrome looks like, who has it, and what the purpose of this group was. My group did both classes together so we were able to exchange emails and are able to connect to each other to share doctors we have seen and treatments we have tried. We discussed how long each of us has been having symptoms. It was validating to hear people from across the country share their symptoms and how they have been feeling. I have been in Facebook groups last winter, but that was so new. I was getting frustrated with not having any answers, so I left the group.

I had some time to allow for all the information over those two days resonate in my head. I needed to absorb everything that was said about symptoms, quality of life, what our "new normal" should look like. It was like a car accident. I wanted to look away but I couldn't. I just needed to think. The thing with Covid, is that it is unique to each individual. No two people, for the most part, have the same experience. Side note: None of the participants in my group were hospitalized. 

The nurses rattled off chronic illnesses like fibromyalgia, chronic fatigue syndrome, orthostatic intolerance syndrome and a few more. Researchers have found that the Covid virus causes disruption to the nervous system. Symptoms from these illnesses are also symptoms that PCS patients are experiencing as well. This is helpful in figuring out ways to "cure" PCS (Post Covid Syndrome). Great! One more abbreviation to learn. COVID is not an auto immune disease, but it acts like one. The damage done to my nervous system is microscopic, because there are no specific tests created yet. Just like there are no lab tests to show fibromyalgia or chronic fatigue. It all depends on symptoms. This got me thinking. What if my symptoms are something else? What if my symptoms are covering up the actual illness? My anxious brain needed some reassurance. The nurse explained that yes, there is damage to your nerves, we just can't test it yet. The pain you feel is real. You will soon hear a lot about central sensitization. 

Central sensitization is the result of a traumatic event, a virus, or serious illness. From the information presented, central sensitization is how previous chronic illnesses are linked. Essentially, my nervous system is on overload. My CNS is in charge of sending messages to the brain. These messages help us determine when something is safe or dangerous. My nervous system has been overloaded to the point where everything causes my brain to think it needs to be in protection mode. Part of the PCS clinic is for me to work with my health coach to rewire my brain. I have to retrain my brain and create new pathways. That was a lot of science stuff. NEXT!

I met with Dr. Collins from the Mayo Clinic regarding my initial appointment in October. Good news, no damage to heart and lungs to be concerned with. This was great news to hear and know that the symptoms are all COVID related and not an underlying condition that was missed previously. What's next? I will still meet with Back and Spine in January. The biggest question mark is the nerve pain and where it is originating from. Dr. Collins believes it is a syndrome known as French Polio, Guilliane-Barre Syndrome. This is where my immune system attacks my nerves and causes pain, usually in the lower extremities. When I go back in January, I also will have a MRA completed to check for any abnormalities in my blood vessels that would be causing the intensified headaches.

Well that's all great news you say! You're right, it is! Great news, however at the same time, a lot to process. Navigating health concerns during a pandemic has already been a challenge. Now, I can't do the things I used to do, at the pace I used to run at. The biggest take away from these meetings and appointments this last week made me realize how important it is to put your health first. It became impossible to run on high octane any longer. I had been burning the candle at both ends and my body couldn't keep up. The day I realized I could no longer try to do all the things: October 25, 2021.

Follow me for shorter updates on Instagram: @behindtheseblueyes86

Behind These Blue Eyes

 These eyes can tell you stories of happiness. These eyes can share stories of things they wish they never experienced. However, through my eyes....I will share my perspective of COVID-19, being diagnosed with Post COVID Syndrome and the affects on my body. Welcome to my story.

In the Beginning

November 1, 2020 I tested positive for COVID-19. The day before was Halloween, and I have never been so tired in my life! I couldn't get enough sleep that day. I didn't even have the energy to take Miss K out tric-or-treating. I woke up that Sunday morning, made breakfast of Corn Pops and a cup of coffee. Yes, Corn Pops do not have the most flavor, so I thought nothing of it. Then, I couldn't taste my coffee. I knew immediately that something wasn't right. I was able to do a video visit with an NP and went to the clinic for a test. This was not my first COVID test, so I knew the drill. POSITIVE. Before I even had the test results back, based on my symptoms, the NP could almost guarantee that I had COVID. I was the first person I knew to get COVID. I was expecting it to feel like having influenza A or B, which I've had before, and literally the body aches were so horrible I cried. I remember sleeping a lot and not having a ton of energy. Getting out of bed to go downstairs was exhausting. I would get dizzy walking 20 feet to my upstairs bathroom. I had a fever that would come and go. A migraine that was relentless. This was just the beginning.

I had to get an initial extension before getting cleared to go back to work for an additional 5 days off of work due to still having respiratory issues; coughing, difficulty breathing, short of breath after just walking a short distance. I returned to work after 10 days but only made it a few hours before going back home and seeing the doctor again. I was dizzy when standing, nauseous, weak, out of breath, and overall still felt sick. I saw another doctor who wanted me to take another 10 days to recover, a high dose of steroids. At this point, it was Thanksgiving, COVID infections were on the rise and schools were changing from all in-person learning to various models of K-2 in-person 5 days and 3-5 were distance learning. I still felt like death. Yes, I've had viruses before. I've been sick, but never anything like this. Nothing I did was making things better. More rest, more fluids, vitamins, anything. I was beyond frustrated not getting answers, not having a treatment plan, not having any other options. I was already exhausted from the havoc going on in my body that I was so tired of not having any answers to feel better. I wanted my life back. I wanted to be able to be a mom, to go to work, to not come home and go right into bed and sleep because I was SO TIRED.

By the turn of the calendar I was ready to start the new year. I had been working with my neurologist to try and get a handle on my migraines and continuous headaches. I was put on 6 weeks of a tapering steroid for the 2nd or 3rd time since testing positive for COVID. I was doing the best I could at work with managing sensitivity to light, sound, continued increased heart rate (tachycardia) and more PVC's. Over Christmas, I wore a holter monitor for my heart, since I was having continued heart palpitations and feeling like my heart was beating faster than it did normally. As of today, this is still a problem and I am now taking heart medication to manage the PVCs but they are starting to get worse again. Stress also causes them to be more noticeable....I've had a lot of stress over the last year.

I was looking for answers but not finding anything. By the end of January there were more patients, like me, who were returning to their doctor with lingering symptoms of COVID. No one had answers. I felt alone. Struggling with an illness that is so new, that there isn't a treatment plan for those that are still sick. Oh yay, lucky me! I get to be the one to pave the way! I was becoming less optimistic as time went on. I tried to maintain a growth mindset, and to allow for grace, and to be patient and understanding. While at the same time I wanted to scream and say, "Look over here. There is something wrong and I need help!" But no one was there. Thankfully I was able to connect with an amazing colleague who had experience in dealing with a healthcare system and health issues where no one had answers.

I am beyond grateful to live in a community where we have accessible healthcare. We have options. I was recommended to see this new provider who had a different perspective on how healthcare should work. She recently had opened her own clinic which focuses on direct primary care: WELL & Company WELL & Company provides western medicine but also thinks outside the box. I started doing a variety of IV infusions to help my immune system. I was putting so much energy into getting well, so I could be the mom I wanted. I wanted to be functioning again at my highest level so I could be at work, doing a job I love. 

I can't count the amount of times I have been poked by a needle in the last year. I wish I could get a dollar for every time I had a needle stick...I might be able to retire at this point. Dr. Sandy Lauer worked together with DNP Tonya Loken to figure out a plan. They ran multiple blood tests to check for inflammation, nutrient deficiencies,auto immune disease markers and hormone levels. My body was at ground zero. I had nothing left in the tank. My body was using up all the nutrition I was getting to function and I had nothing left in the bank to withdraw from. I was literally wiped out. Finally! I have SOMETHING to show and give me a reason why I was feeling so tired all the time.

After around 100 IV sticks my one good vein was needing a break. I had my first PICC line placed in March. This was a lifesaver when it came to getting infusions, both at WELL and at the hospital for migraine infusion treatments. I wish I could say I was feeling better. I was doing everything I could to keep it together. I was ready for summer to take a break from everything COVID and truly have time to recharge. Everyone worldwide has been overwhelmed by this pandemic. Teachers, healthcare, shipping industry. Everything has been effected.

To top things off, I fell while playing a game outside and ended up breaking my hand. I was a walking hot mess. PICC line in my left arm, and a bright pink cast on my right hand. I decided that I wanted to take a break from treatments and doctors over the summer. I wanted to take the time to rest and try and give my body the time it needed to heal. Summer went too fast and I was still struggling. I headed into fall and hit the ground running to make it the best year yet. I had my ducks in a row and this was the year that I was going to make a difference. Not quite that easy.

In June, I was referred to the Mayo Post COVID clinic. I wasn't able to get in until October, but the process was at least started. I also had lost hearing in my left ear. I saw an audiologist who confirmed that I have moderate hearing loss in my left ear, and mild hearing loss in my right ear. I didn't think anything of it when it happened. I woke up one day in May and had a hard time hearing. I thought it was from allergies or a sinus infection. I literally was always sick since having COVID, so it wasn't unusual for me to have a runny nose. I talked with another doctor who had said at the time, she had 3 patients who were getting cochlear implants because COVID caused hearing loss. I have a follow up hearing test at the end of November. Stay tuned for results and next steps.

Present Day

Here we are. Present day. If you have been following on Instagram, you've been there from day 1 of my trip to Mayo. Mayo confirmed my Post COVID Syndrome. I went through a gauntlet of tests to confirm the diagnosis, and to make sure there were not any other serious complications. My symptoms that have been reoccurring are fatigue, brain fog, muscle aches, nerve pain, weakened immune system, headaches, gastrointestinal issues, increased anxiety, and hard time concentrating on things for long periods of time. For instance, it has taken me over an hour to type up to this point. I will have a thought, and then I lose it. I used to be able to push out a blog post with no problem. 

Well, this is the start of my journey. Follow along, feel free to ask questions. Someone told me something good will come of this situation. I believe that I am the voice that needs to speak up. I want to create awareness for this new syndrome that has no cure yet. This also brings awareness to other chronic illnesses that often times people think are not real. Post COVID Syndrome is very similar to chronic fatigue syndrome (CFS/ME), fibromyalgia, PICS, POTS. More time is needed, which is why I am participating with Mayo Clinic Post COVID group.

Thank you for taking the time to see things through my perspective. 

Follow me on IG: @behindtheseblueyes86