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A Post-Covid Shitstorm: My Story, Part I

Jul 10, 2023

**This post may have mental health, Lyme, and/or COVID triggers. If you are struggling mentally or physically with your health, I highly advise skipping this post and heading over to part 2, where I provide resources for providers and tools I used during my recovery. I heavily researched the web when I was sick, and though it was helpful in some aspects, it also made my anxiety much worse. Don't do that to yourself if you're already suffering**

It’s hard to know where to start because there were numerous moving parts throughout the entirety of my post-covid journey. I figured the easiest way was to start from the beginning and go month by month.

December 2021:

I contracted COVID. COVID itself was mild, with respiratory symptoms like any other cold. Ten days later, inflammation took over, and I developed bladder problems, pelvic pressure, body aches, fatigue, anxiety and insomnia.

First and foremost, the bladder symptoms were absolute hell. If you’ve ever had a UTI (urinary tract infection), imagine feeling those symptoms 24/7, even after taking prescription meds that are supposed to relieve symptoms. These symptoms created horrible anxiety and kept me from sleeping well.

I made an appointment with my primary care provider (PCP) for a urine analysis (UA) to see if I had an infection. My urine came back “not good, but not great” per my PCP. There was microscopic blood and white blood cells present, but nothing else that would indicate treatment for an infection. Cue worsening anxiety (how do I know when this will end? This obviously isn’t a condition that will go away with antibiotics, so now I must live with these symptoms without a plan for relief, for an unknown amount of time).

It was 3 days before Christmas, so my provider decided to prescribe a bladder spasm medication with hopes that would help relieve the bladder symptoms so that I could enjoy the holiday, and hopefully sleep.  The medication didn’t work. It made some of the symptoms worse, so I instantly stopped taking it. I was told to take it longer (those meds take approximately 2 weeks to start working), but because it had immediately made symptoms worse, I stopped. In the trash it went. I called again after the holiday to let my PCP know the bladder symptoms were still present, but also to discuss the anxiety I was experiencing because it was keeping me from sleeping. I immediately told her I wasn’t interested in benzo’s (Xanax, Ativan, Klonopin). She recommended the antihistamine, hydroxyzine. I took it twice. I didn’t sleep for a minute both nights. I stayed in this very uncomfortable state of wanting to sleep, with my body physically shutting down, but I couldn’t fall asleep.

I made it the first week on 10 hours of sleep. Each night was a battle of trying to get my anxiety under control and not getting frustrated that I couldn’t sleep. I would wake my husband up hoping he’d be able to do something to help. I would have him put his hand on my chest and abdomen (to alleviate the extreme pressure in these areas). The weight of his hand helped for about 10 minutes and then the anxiety came back full force. I tried a weighted blanket. I tried listening to meditation. I tried using essentials oils. I tried sleeping at the other end of the bed. There were many attempts to manage the anxiety with many failures. Usually I ended up laying in bed, wide awake (and exhausted), wondering when this would pass or if I would fall asleep.

The anxiety continued, progressively becoming worse. I continued waking my husband up to put his hand or arm on my chest to help with the pressure. I developed muscle twitches in my arms and neck, and felt I was going to explode. It’s an experience that’s hard to explain. I would pace the hallway near our bedroom crying and shaking, asking God what I did to deserve this.

January of 2022:

Somewhere in this timeframe, I start researching the web obsessively for answers. I looked for urologists (bladder doctors) and booked and appointment with two of them for my bladder symptoms. One was highly recommended but couldn’t get me in for a month. The other could get me in sooner, so I booked that one in the interim. I also booked with my OB to rule any uterine/vaginal problems out.

Meanwhile, I decided I needed to take time off work (massaging). I tried to go back for a couple of session’s but I couldn’t manage it. Anxiety took over as I closed the door into my massage room. The physical exertion from massaging aggravated my bladder symptoms as well. So, my massage practice closed doors until further notice.

*Side note- we were/are currently building a house. We are trying to do that debt free, without a mortgage. I left my job and as an RN in 2020 to open my massage practice to create a better work-life balance for myself and to be more present for my family. I wanted to focus on being a mom, but also wanted to provide income for our family. Shutting down my practice meant no income. That, on top of barely being able to take care of my kids, broke me emotionally.

Back to researching the web: I became a pro on bladder issues. I had investigated so many different diagnoses and ended up on interstitial cystitis every time (inflammation of the bladder with an unknown etiology). I have a few friends who talked to me about their experiences with it and how they manage it. I was immensely thankful for them, but I could not fathom the thought of having a chronic condition. I did not want to feel like this forever. I wanted to know my options were to help me get through this. I knew someone had to have recovered from these symptoms. I started looking into success stories of people with interstitial cystitis and other bladder conditions. BAM, several of them were in remission because of diet and lifestyle changes. I decided I would begin by eliminating foods out of my diet.

Elimination of food may have helped (I think it did) but it also created an extreme fear of food. I had a hard time eating and severely restricted myself. I ended up dropping 20-25lbs in two months. I got extremely thin, and ugh, felt horrible. I’m usually feeling good around 140lbs. I dropped to my lowest of 115lbs in February. My diet consisted of eggs, bread, some plain veggies, and rice. All bland, no seasonings or condiments.

I hated going to the grocery store and being around other people while they were eating because they were able to eat food that I used to enjoy, but no longer could  because of the fear of bladder symptoms worsening.  

My appointment with my OB provider came before my scheduled urology appointments. I drove 45 minutes on 3 hours of sleep, and walked in to the appointment emotionally unstable. After explaining my situation to the provider, including the number of UA’s I’d had, the symptoms I was experiencing, and my fear of not getting better, he said, with a sarcastic tone, “what do you want me to do for you?”.

I have experience working as an RN, so typically I know to navigate through these kinds of comments. But in this moment, I was a normal patient. I was running on lack of sleep, suffering from anxiety and bladder symptoms. I could barely take care of myself. At this point, it’d be 3 weeks of 3 hours per night of sleep. His snarky attitude was unprofessional and uncalled for. 

I patiently told the doctor I was hoping to rule out any uterine conditions so I can continue getting to the bottom of this. He reluctantly did a vaginal swab and that was it. No pelvic exam or further investigation. At the end of the appointment, I told him I was planning to see a urologist as well. He proceeded to say “the urologist won’t find anything just so you know”.

If this blog is in the hands of a healthcare provider, FOR THE LOVE OF GOD, DO NOT SPEAK THIS WAY TO YOUR PATIENTS. Not only did HE not have a plan (nor was he interested in thinking of one), he also told me MY plan for myself wasn’t going to work. I left angry and fearful that I was officially going to be stuck like this. I thought to myself, “he’s a doctor, he has more education than I do, he’s probably right”.

**I found out later that he left the practice and had several negative reviews from other patients. 

I ended up seeing the first urologist who was very kind. He recommended continuing with the diet elimination and scheduled a cystoscopy to look at the inside of my bladder. The next week I had the cystoscopy done. That morning of the procedure I realized my bladder was feeling a little bit better. I was almost excited walking into the urology office. Unfortunately, the cystoscopy made symptoms worse, and that excitement left quicker than it came. The results from the procedure were normal. He recommended pelvic floor physical therapy.

I started pelvic floor PT (physical therapy) the next week. The PT was very sweet but it ended up exacerbating symptoms. I stopped going. Then one of my PT friends recommended another pelvic floor PT.  I was hesitant but after researching the benefits of PT for bladder issues, I decided to give it another go. It was like night & day difference this second time around. I stuck with her for several months. My bladder symptoms did start showing improvement.

Sometime in January, there was a dinosaur event happening at the Oncenter in Syracuse. My mom wanted to take the kids. I thought it’d be a good idea. The morning of the event, I didn’t want to go. I didn’t want to leave the house. I couldn’t explain why. I was exhausted (again, still no more than 3 hours of sleep), and I had that horrible pressure in my chest. I almost decided not to go. At the VERY last minute I told myself I wouldn't let this control me; I threw on some clothes and headed out. My bladder was still bothering me so I was uncomfortable, but I went and tried to enjoy the experience with the kiddos. While we were there, I developed body aches. I felt horrible. I figured it was from not sleeping well for so long. I was overwhelmed with the hundreds of people around me and the noise level was overstimulating. I became a basket case on the inside. It felt like I was coming down with the flu with the way my body ached. Later that night, I ended up with a fever and had to take ibuprofen to help with the body aches. I didn’t sleep that night (shocker). I WAS EXHAUSTED. At this point, it’d been 4 weeks of poor sleep. I was trying to go to bed at 6p, hopeful I’d fall asleep by 10. Nope. Never worked.

February 2022:  

This was my second attempt to go back to work. I would randomly have a night where I’d get 5 consecutive hours of sleep and feel hopeful that life was returning to normal. The second attempt back to work failed, so I kept my business closed. I started to worry that I’d have to permanently shut down something I had worked so hard for.

I ended up seeing the 2nd urologist who was sweet and had amazing bedside manner. But like I said before, I had already looked SO obsessively on the web about bladder symptoms that I knew she’d want to diagnose me with IC (interstitial cystitis). She wanted to. Except she wanted to do an invasive procedure to diagnose it and help the symptoms. The AUA (American Urology Association) stated that it wasn’t a definite way to diagnose, and it doesn’t always help with symptoms. When I investigated other stories of patients that had gone through with the procedure, few of them stated that it helped. Many stated that it made it worse. It was like the cystoscopy I had already done (which made symptoms worse), so I refused. I couldn’t handle another thing. And my symptoms were having periods of relief. She said we could try bladder spasm medication again. Yet again, one dose and I felt worse. I stopped them. She said there was nothing else she could do for me, so off I went. 

March 2022: 

I was on month 3 of severe anxiety and insomnia. My bladder was surprisingly getting better, but it was still uncomfortable. I accepted that I wouldn’t be resolving my bladder symptoms right away, so I decided to focus on the insomnia. I called my PCP again and told her that I think I need to pursue Xanax. She agreed and prescribed it. We also discussed starting Zoloft or Lexapro to help with the anxiety long term. I really didn’t want to try antidepressants (ask my husband about this and he’ll tell you that it was a huge fight to get me to do anything with medication). I did end up trying the Xanax one night and I fell asleep quickly. I think I slept for 4 hours, but then woke up and couldn’t fall back asleep. I had a massive headache the next day. I rarely took the Xanax after that. I decided to take Lexapro. The first night after taking that, I couldn’t stop shaking and felt like I had the stomach bug. I’m surprised I didn’t call it quits after that, but I knew antidepressants take weeks to kick in so I continued taking it. The 2nd and 3rd nights I didn’t sleep at all. I felt wired. I stopped them. I was terrified they’d make the insomnia worse than it already was (FYI: this is what decision-making looks like when anxiety is involved. It's hard to make logical decisions when you’re in this state. Many of my decisions and thought processes were illogical and irrational. I was doing the best I could).

My search for helped continued. I found CBTi (cognitive behavioral therapy for insomnia) in several places. When looking for providers who specialized in that therapy, I ended up finding a psychologist in Boston (via telemedicine) who specialized in sleep. I made an appointment with him. His treatment resonated with me. He wanted to restore sleep in an organic way without medication. Barret really liked him too, so we started to implement what he taught me. This was SO hard. I’ll write another blog on the sleep tactics but holy hell, this was difficult. 

*** Around this time, I found an integrative psychiatric PA who takes a comprehensive approach to healing from mental health conditions. She is amazing. I still recommend her to everyone. She is an absolute angel. She ran every lab she could. We completed a lot of functional medicine testing ( including food sensitivities, gut microbiome, neurotransmitter, hormone, tick-borne illness, and a few others). These tests are controversial and more research is needed for them, however, they gave me SOME data to digest and then create goals to work toward (more on this in Part 2). She agreed to work in conjunction with the sleep doctor.** 

About a week or two after trying to implement the sleep docs treatment, Barret and I got into a huge fight. I was having a hard time committing to the treatment (it was hard, and I was exhausted) and Barret was getting frustrated about my non-compliance to the treatment. I ended storming out of the house and driving to our property (where I almost got into an accident). Don’t drive when you’re super sleep deprived and an emotional wreck. A truck almost T-boned me but thank god they didn’t. 

That emotionally charged fight got my ass in gear. I started to change my mindset. I realized that nobody else was going to recover for me, that I had to be the one to do it, no matter how hard it is. I started doing everything the sleep doc told me.

I started to make improvement within the next week. I was starting to manage my anxiety and reframe my mindset around what was happening to/for me. Barret and I were both feeling hopeful. I started to take care of the kids again and I was organizing/cleaning the house. My anxiety started to get under control. Sleep was minimally improving, but improving nonetheless. 

A week later, I was having a difficult day and Barret asked me to go tap some trees with him to collect sap that would later be boiled down into maple syrup. I went out with him into the woods and tried to enjoy it. The next morning, I was driving my youngest kiddo to school and found a lump on my head. I knew it was a tick. I had a tick on my head 4 years ago and it felt exactly like that. I called Barret in a panic. I went home and he took the tick out of my head. I asked, “Barret.. what if I get Lyme?”. He said “Megan, stop. You don’t have symptoms; you don’t need to think about that”.

**Barret had to start talking to me very factually per the sleep doctors recommendations. My anxiety was so bad that I would get stuck in “what if” rabbit holes. He knew this discussion about Lyme being a potential factor wouldn’t go anywhere productive so he needed to help me keep my mind on track. I still panicked but I knew he was right. In that moment, I didn’t have symptoms.**

Wellllll back to the internet I went. I looked up Lyme disease and it was the worst thing I could have done for myself. Fortunately, I was able to use the tools the sleep doc gave me to get myself out of that tortuous space and made the decision that I would take it day by day. If symptoms developed, I would handle it then.

Two weeks later, I developed joint pain, calf pain, severe brain fog, and worsening anxiety. One night, my left leg was numb and couldn’t get off the floor (I slept on the floor next to our bed. This was part of the sleep training I was doing). I couldn’t remember how to drive my oldest kid to school- which was right down the road. My anxiety turned into severe depression. The gains I had made with the sleep doc all went down the drain. He recommended starting a low dose antidepressant to help me through this. I refused. I asked my PCP if she would treat me for Lyme, she refused and ordered and MRI to rule out multiple sclerosis. I went to another PCP in that same office. When he walked in the room he waved his paper around and said “and who are we talking to today?”. I had heard the nurse give him report of my entire situation.. so I wasn't sure if he was joking or not. His personality did not resonate with me. He acted like he knew nothing about me. I had to reorient him to my chart. At one point he stated, “your thyroid is off, I'm referring you to an endocrinologist”. I replied and said “ no.. those labs were from December and I had follow-up labs to confirm that my thyroid values are within normal limits. I don’t think that’s necessary”. Then he proceeded to get frustrated because I had so many labs drawn that he felt were unnecessary. I wanted to leave mid appointment. I said “I had a tick bite with symptoms. Can we please treat for Lyme?” He refused. He said he’d put in a referral for an endocrinologist and then sent me on my way. I’ve never been so infuriated with a provider. Again.. in my head I told myself that he has a medical degree and I’m sick, so I must be the crazy one.

I went to the third provider in that office asking for treatment for Lyme. He refused to treat me until I followed up with my original provider who wouldn't treat me for Lyme until my MRI was completed and resulted reviewed.

My MRI ended up being completed and came back clean. 

**I must mention that per the CDC, if there is a known exposure to a tick with symptoms, you treat with doxycycline. It’s an antibiotic. I wasn’t looked for oxycodone or Ritalin or some sort of controlled substance. I was looking for an antibiotic to treat the bacteria ravaging my body.**

April 2022:

I went to an urgent care and asked the provider there if she would treat for Lyme and she said I should go to the long haul Covid clinic at Upstate. She said that unless my ELISA or western blot tests comes back positive, they typically wont treat it (side note- it takes 4 to 6 weeks from the start of infection to pull a positive on those tests). All my ELISA tests &  my western blot test were negative - I had 4 of them done over a period of 2 weeks.

I went to a different urgent care and basically begged the provider to treat me for Lyme. He was concerned, but very unsure if he should treat me considering my history over the last 3 months. He said “well I guess we could treat you for two weeks..” in a very timid way. I left with a prescription for doxy. I decided to hold off on taking it because he was so timid with his decision.

My anxiety was insane at this point. I was so confused, in pain, and SO anxious. I didn't leave the house much. Barret was debating on taking time off work because of the debilitating mental and physical state I was in. 

I met with my integrative PA. She agreed that I needed to be treated with Doxy, but because it had been 6 weeks since the start of infection, she referred me to Integrative Medicine of CNY who specializes in Lyme treatment.

Barret and I went to my appointment at Integrative Medicine of CNY. It was a breath of fresh air. We came up with a comprehensive treatment plan that made sense, however, it was overwhelming. We got in the car to leave, and I cried because of everything I needed to do to recover. I feared my bladder symptoms flaring up, I feared getting worse (symptoms typically worsen at the beginning of Lyme treatment), I was scared of my mental health plummeting even more than it already had. Barret agreed that he felt overwhelmed with the treatment plan as well, but that it would help me get better and to move forward with it. 

We went home. It took me another week to build up the courage to start the Lyme treatment. I started with the immune system support for a couple of weeks. Eventually I took the doxycycline. The few days after the first dose of doxy were hard. My bladder did flare, and I wanted to stop treatment immediately, but I kept moving forward. My bladder flare calmed down within a week or so. I’ll write another post that lists exactly what my recovery plan was for Lyme. But long story short, it was time consuming and rough. I believe I took roughly 17 pills a day for 3 months. 

I had mentioned the anxiety and depression to the Lyme provider who felt that it would get better with treatment. I continued to avoid medication (antidepressants) with hopes that we would see improvement. I did take Xanax 2-3 times (total) but it gave me a horrible headache after, so I avoided it if possible. I also continued working with the sleep doc and my integrative psychiatric PA.

However, my mental health continued to deteriorate. This next section is rough, just a heads up.

Lyme can present with neuropsychotic features, so on top of the anxiety and insomnia I dealt with prior to Lyme, I then developed severe depression and brain fog, and increased paranoia about my health because of the Lyme infection.

Getting out of bed and moving became a big chore. I felt so. exhausted. but couldn’t fall asleep (wtf else was new though). Getting dressed and showering was an even bigger task to complete. Treatment for Lyme became a chore. I cut back on a large portion of it because it was too overwhelming for me. I had a hard time staying consistent with the sleep doctor’s regimen. I was taking 5 steps back from where I was after the Lyme infection really settled in. I started to think about how much I had suffered and how much worse I was getting. I started thinking about living this way for the rest of my life and I knew I didn’t want to. I felt I wasn’t a good wife to Barret, I wasn’t the mom I knew I could be to our kids, and I felt like I was becoming a burden to everyone around me. Anxiety and depression had me spending my days in a cycle of crying and shaking, worrying about my health, worrying about my role in my family, worrying about basically everything and anything else, and then sinking into a deep dark hole wishing it would end. 

At this point I start to have suicidal ideation. I started thinking that dying would be better than living. I wasn’t contributing my family or society; I was just existing in an unimaginably painful state (mentally and physically). 

May 2022:

I debated starting antidepressants because of my mental state deteriorating. I was becoming scared of myself and my thoughts telling me to attempt something I knew I didn’t want, but would relieve me of the suffering I had been through. I started to plan the kids and Barret’s future without me. I asked Barret to remarry, to find someone who would be a good fit as a mom for the boys, and requested he stay close to my family so the kids can have a sense of normalcy when I’m gone. I was literally planning to die. I had several of these conversations with Barret. We ended up having a really hard one in my car (away from the kids).  It went like this:

Me: Would you live a high quality 30 years or a low quality 70 years?

Barret: I would live 70 and try to make it as high quality as possible

Me: I can’t do this much longer

Barret: Megan, please try medication

Me: I don’t think anything can help me at this point

Barret: You haven’t tried, please try medication

Me: I cannot do this for another 70 years Barret. I really wish someone would just come kill me. I can’t live like this any longer.

Barret: Megan I can’t live life without you, I need you, the boys need you.

Me: I’m barely a mom, I’m barely a wife. I’m not doing anything for you guys. I can’t do this.

Barret started crying, I started crying more than I already was. It felt like life stood still for a few minutes.

I had this same conversation with my dad (imagine your child telling you that they want to end their life).. in a nutshell, he told me to keep holding on and to keep fighting. He also cried with me.

I’m glad they cried with me. I felt less lonely (even though I had a lot of support, when you’re the only sick one, you feel very lonely).  

I remembered the moment in the car with Barret every time I had suicidal thought. I thought about the conversation with my dad. I thought about another woman trying to parent my boys. I knew absolutely nobody could replace me and uphold my standards of parenting. I held onto those thoughts. They held my head above water.

Barret and I had few more conversations like this. We mentioned the suicidal thoughts to my sleep doctor who advised several times to remove all objects from the home that I could attempt suicide with. He told Barret to bring me to the hospital immediately if I mentioned having thoughts or wanting to/planning to act them out. He recommended starting antidepressants at every appointment.

Our guns had been locked up in a gun safe, but my prescriptions stayed out (I had many of them from my initial doctor appts in the beginning).

I continued to refuse medication. I’m still not sure why. I think I was scared of it not working or possibly making me worse even though I was basically at rock bottom.

Two weeks later the suicidal thoughts became unmanageable. I would drive and see every telephone pole as an opportunity to end the suffering. I would go to our property and bawl because a place that brought so much happiness, no longer did. I would have thoughts of walking where my husband was working (building the house) and imagine shooting myself in front of him. I started thinking about how I could take all my prescription medications to end it all. I ended up texting the suicide hotline a few times, and reaching out to friends letting them know I'm not ok. 

TO CLARIFY: It’s not that I wanted to die. I just didn’t want to suffer anymore.

At some point I started to understand that I wasn’t getting out of this organically. I knew I needed some sort of medication to help. I reached out to my integrative psych PA and she recommended genetic testing to see which medication would be best for me. Thank god for her. I was able to see which antidepressant was best for me and learned that my body doesn’t metabolize Xanax efficiently (hence the headaches I’d get after). She ordered Pristiq and Ativan. Pristiq would help with my anxiety and depression long-term and the Ativan would help me sleep and manage the anxiety while I adjusted to the antidepressant (Pristiq).

It took another week for me to build the courage to take the medication (both the Pristiq and Ativan). It got to a point that I knew I was either going to start medication, or I’d end up in the hospital where they’d prescribe medication to me anyway. I felt the hospital would be more traumatizing than attempting to start medication at home. I eventually decided to start the Pristiq. Barret took two weeks off work to be with me. When starting and antidepressant, symptoms can get worse within the first couple of weeks. I feared that if I got worse, I may attempt suicide. He took off work and stayed with me.

One morning I woke up, had the Pristiq in my hand and held it for an hour. I had such a hard time building the courage to put it in my mouth. I finally did, and right after, I panicked. Barret forced me to get outside and went for a walk. I started taking the Ativan for sleep that night.

The first night I took the Ativan, I slept 6 hours. SIX HOURS. I couldn’t believe it. I continued taking the Pristiq. After the first week, under my providers advisement, I increased the dose. The lower dose gave me more energy, but I couldn’t manage the depressive feelings. The higher dose FINALLY started helping me with the anxiety and depression.

June 2022:

I started sleeping with the Ativan, the Pristiq kicked in after 4 weeks. The suicidal thoughts went away, I took on the entire Lyme regimen and my bladder symptoms continued to resolve. I was finally getting on my feet and starting my road to recovery.

More on recovery in Part II.

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