In March 2023 our basement flooded. During this time our entire family was down and out with covid and then as soon as we recovered from that norovirus hit us hard. Because of this the basement was not properly cleaned up right away.

This allowed mold to grow in the basement. However, it was invisible and it would take over a year to discover it was there at all.

In April 2023 (a month after the flood) I was eating dinner and suddenly could not swallow my food. This was terrifying but I assumed it was a one off situation. However, the next day, not only could I still not swallow food, but also could not swallow liquid. The day after that was even worse as I also stopped producing saliva. I stood up and fell to the floor with chest pain as if I was having a heart attack. We called 911 and once at the hospital they gave me an emergency EGD thinking there was something stuck in my throat. The EGD showed mild esophagitis but nothing else. They did dilate my throat since they were already in there, but once I woke up I still could not even sip water. On top of that I had a VERY hard time coming out of the anesthesia and had to stay in the hospital for longer than most people while they monitored me.

Once at home, I only got worse. I started seeing a GI specialist but was still going to the hospital at least once a week. Because I had been diagnosed with esophagitis doctors did not want to further investigate any other things that could be wrong, but I knew it was not that. I got put on carafate but my insurance wouldn’t cover it so I was paying a little over $100 a week for this medication. They tried me on 3 different PPI’s which all had horrible side effects before I started taking nexium. It took a while but my esophagitis did heal. But I was still far from okay. Honestly, I was only getting worse.

I decided to start seeking out alternative treatment options in desperation. I went to acupuncture (again had to pay out of pocket). After 1-2 sessions I was able to swallow liquid again. This felt like a miracle. At this point I was living on one ensure a day. It would take me almost 12 hours to be able to drink that small bottle. That was 400 calories a day. As you can imagine, I felt pretty horrible and did not even have the energy to get out of bed most days. When we pressed the doctors about this they offered to give me a feeding tube, but that felt like a band aid and they still weren’t looking into what was actually happening.

During all this I had very intense neck pain and thought it may be the reason I still couldn’t swallow food. The doctor ordered a cervical MRI but my insurance said I couldn’t get one until l got an EMG and went through 6 weeks of physical therapy. They also referred me to a speech language pathologist since I had a few different barium swallows done that showed I SHOULD be able to swallow but still couldn’t.

While waiting to get into either of those programs, I ended up spending 4 days in St. Mary’s. Not only did I feel awful from not eating, but also I was having random ‘attacks’ where my hands and feet were tingling/going numb and I would get hit with so much dizziness I couldn’t even sit up. Sometimes it felt like my tongue and lips were swelling. They thought I had MS. I did all the scans and tests. I am thankful I do not have MS but still wasn’t getting any answers. On my 3rd night there they came in to tell me they found a mass in my brain that explains all my issues and I will need brain surgery the next morning and it might take away my ability to speak. I spend the whole night sobbing and terrified. The next morning the neurologist came in to tell me they did find something but they don’t think it’s anything to be concerned about and isn’t causing any of my issues. No brain surgery for me (thank god!) but also still no answers. I would just need to get this monitored every few months for the next year (which I did and am happy to say there was no change and they now believe it’s something I was born with and will never effect me).

I was wait listed for both Speech and PT at this point. However, I got into speech first because someone had cancelled their appointment. While there the worker I saw told me they had put in my chart my swallowing issues were likely anxiety (I have been told this so many times at this point) but she could tell it wasn’t. She could see that something was going on but she did not know what and could not help. However, she said she could fast track me into Physical Therapy. And she did. I’m forever thankful for her.

During all of this, I needed a root canal (which I had discovered before all the illness) and asked the dentist if I should still get it with all my health problems. They decided it needed to be done asap and they thought it might actually be the cause of my swallowing issues. I don’t have dental insurance but went ahead with it ($3200 for that and a crown). I was put on antibiotics in preparation. I got the root canal but I still had a ton of feeling in the tooth afterwards and it was painful. I called the dentist and they said I needed another round of antibiotics before I could get my crown. I finished those and got it done. There was no change in how I felt. Turns out the tooth was not the problem.

I see another doctor about a week or so after the crown who guesses I may have thrush. That meant another round of antibiotics. (I did not have thrush). 1-2 weeks later I was back at the doctor for horrible ear pain (amongst all my other issues) and they put me on yet again another antibiotic.

While going through all the issues I got a call from physical therapy. I started going there and after 2 sessions with no change the PT that was in charge asked if I was willing to see someone different who did craniosacral because she thinks it might help. I said I will try anything at this point. I got switched to Linda over at Covenant PT (I mention her by name because I will forever be grateful our paths crossed). She started craniosacral. The very same day we did our first treatment I was able to swallow food again! This led me into a ton of research and led me to the conclusion I had an issue with my vagus nerve. I kept seeing Linda 3 times a week.

Once I could eat again I wanted to eat everything. It had been 65 days of one ensure a day at this point. However, I quickly landed back in the hospital after almost losing consciousness. Not only did I have low potassium but they also warned me I might die of refeeding syndrome. Then- they sent me home. I called my doctor who told me they could set me up with a nutritionist but it would only be one 15 minute session and I would have to wait about 4 weeks. I did not think I would be alive in 4 weeks if I waited. I opted to find a nutritionist on my own who specialized in eating disorders (because my body was basically acting as someone who had one at that point). This was $100 a session every week for 4 weeks. But she did help me and I was able to safely start eating again.

I thought my troubles were over at this point but remember all those antibiotics I was taking? While also being on a PPI? Well that caused me to get c diff. There is a very simple test for c diff and a pretty easy treatment, but no doctors would test me. Most people who have c diff have liquid stools that smell pretty bad. I did not have either of these. I kept sending samples to the lab and they kept refusing to test me. It got so bad that not only could I not leave my house but I was in the worst pain of my life. I was sure I was going to die. Instead of testing me, they sent me to U of M. I was fine with this because I thought maybe I would finally get answers for all my problems. Wrong again.

U of M also refused to test me and told me I likely have Crohn’s disease. I explained I definitely do not but they ran a bunch of tests anyways. Then they took me in a room and tried to tell me I need to accept this is my life now. I told her absolutely not. I did not spend 37 years in amazing health and now suddenly I’m supposed to accept my life is laying in bed rotting away in agony.

I went back to my doctor’s office the next day and told them I will need to be seen that day and someone will have to test me for c diff. Thankfully the doctor who saw me believed me and tested me. It was positive. I got the medication the next day and all those issues cleared up. That was two months time. Two months with c diff while they refused to test me.

With that out of the way, and still doing craniosacral a few times a week I started to improve greatly. Then my insurance decided I had enough PT. They did an appeal but it was denied. I started backsliding and issues popped up more frequently. I assumed this was all from stopping craniosacral (and that did play a part). Linda referred me to someone else who did craniosacral since I couldn’t keep going to Covenant even if I paid out of pocket. I started seeing the other person but could only go once a week as it was $100 a visit and at this point my savings were pretty depleted. I obviously had not been working or getting paid this entire time as I could barely stand most days.

Although I was still doing pretty bad I decided I was okay enough to go back to work super part time. I’m talking about 10 hours a week. This was so exhausting to me I spent most of the time I wasn’t at work laying around at home feeling awful. I was still pushing doctor’s to figure out what was wrong with me and they just kept saying they have no idea and trying to shove me on anxiety meds (which I refused).

Then comes February 2024. Almost an entire year of sickness and although I could eat now, I did not feel okay at all. The opportunity to go out of state for work came up and normally I always jump on that. This time I was going to pass because of my health but something told me I should go. I was sick of living my life in bed- scared and sick. I told myself I will go to the work assignment and if something happens I will go to the closest hospital and just come home after. This ended up being the perfect decision.

I was gone for two weeks. While there I was working 40 hours a week but also going out almost every night with coworkers. I felt like I had never been sick a day in my life- like the last year had never happened. At the end of the two weeks I came home and within 24 hours I could barely get out of bed again. I made an appointment with my doctor right away.

I told him what happened and said something in my house or in Michigan was killing me. I suspected mold after endless research. He sent me for allergy testing.

As far as I had known I had never been allergic to anything in my life. I told the allergist I suspected mold and he did not believe me but did the testing. Turns out the ONLY thing I reacted to was indoor mold. Aspergillus especially. He said I was right and likely had it in my house.

We found someone to come inspect our basement and they confirmed there was mold. We paid about $1500 for remediation and to get our ducts cleaned. After that I was sure I would get better. Except I didn’t.

At this point it was summer and I was spending all my waking hours outside. This made such a huge difference in my health and I was honestly at about 85% health wise. I went back to working full time, traveling, etc. But I would wake up every day feeling pretty run down and terrible. I knew the remediation had failed. We had the company come back and perform an air sampling (that cost $100). The results were horrendous. Our aspergillus count (what I’m allergic to) was beyond hazardous levels. We had to have them come back and remediate again (which was like pulling teeth btw). Even after the second remediation I did not feel any better inside.

This brings us all the way to September 2024. Second remediation was first week of September. By the end of the month I was having increasing bouts of shortness of breath. These would last between 30 seconds and 3 minutes. I would have to lay down because of the dizziness while I struggled for air. At first this was once a week maybe. But quickly became a couple times a week. I noticed once we had turned the heat back on and started spending more time inside the symptoms ramped up very quickly. This is how I knew the second remediation definitely failed.

At this point my plan was to move out. I started to search for places to live but not only had I not worked the majority of the last two years, I had maxed out all my credit cards, destroyed my credit, and drained all my savings trying to figure out what was wrong with me. I pushed through my symptoms and kept working as much as possible to put money away and fix my credit. However, once December 27 came things took a drastic turn for the worst. I had been fine that entire day. Before bed I took a small bite of food and suddenly could barely breathe. It got increasingly worse until I felt like I could not get any air at all and rushed to the ER. They pumped me full of Benadryl and prednisone and told me not to eat that food anymore (even though I knew that was not what was happening I agreed and haven’t since). I explained the mold situation but they said to follow up with my doctor and just keep Benadryl on me at all times and never be too far away from a hospital.

I went to work the next day and was okay. The following day I went to work but had to leave at lunch because of how bad I felt. The day after that I was working and suddenly felt like I might pass out and could barely breathe. A coworker took me home and that was the start of almost a month of missed work. I thought maybe putting myself up in a hotel for a few days would help me feel better. I put 3 nights on a credit card (that I finally paid off) but I was still struggling there as well. A couple days later we all went down with covid. That on top of everything else led to about 2- 3 weeks of daily Benadryl dosing and not getting out of bed. I went to the hospital two other times due to not being able to breathe. Both times they said just keep taking Benadryl and they can give me anxiety meds if I chose.

During these weeks 90% of the time when I would eat anything I would immediately start struggling to breathe and have to take Benadryl. It did not matter what the food was as I kept a detailed food log and one day I would eat something that would be fine and the next it would cause my throat to start closing. I also had symptoms return that made me feel like I may have c diff again (and yet again they refused to test me)

At the follow up appt I saw a doctor who was actually informed about mold illness. After hearing my story and showing him the results of our air sampling he agreed that was my issue. He called the health department to try to get me financial help (which didn’t yield any results but I appreciate it) and ordered some testing for me that I’m still waiting on the results for. I also got referred back to GI but they can’t see me until March 13.

I have returned back to work part time but every day is a gamble if I will be able to function or not. I am trying (unsuccessfully it seems) to get intermittent leave so I do not lose my job of 12 years that I love. (Also shout out to my team and managers for being the amazing people they are and letting me keep my job this entire time. I am forever grateful. It’s corporate that I’m worried about)

I have decided moving out is not in the cards for me currently. Not only is my credit still not great (though way better) but I can’t prove I make enough since I have been super part time lately. Also all the houses I toured likely have WAY more mold than my house (seriously, I can’t believe people are showing houses that should be abandoned and wanting over a thousand dollars a month still!).

We did another round of air sampling ($175) a couple weeks ago that showed there is still mold in the basement (though WAY less thank god) and we called another remediation company that I can already tell is a million times more knowledgeable. They did not see any moisture issues and said the last company had just sprayed a fog that although killed most of the mold in the air they didn’t clean up any of the spores and dead mold spores are equally as dangerous to me as live ones. Which is why I was never getting better and in fact got so much worse after turning on the heat. They will be here Friday to do more thorough remediation that they will also give us a 10 year warranty on. I feel good about this but it will cost $3,000.

After the remediation we will need our ducts cleaned and sanitized and the same with our furnace. This is an additional $750. There are two rooms in our house with carpet still that will need to be torn out also directly after remediation. I can not be home during this time which means paying however much for a hotel for 1-2 nights. Then also the cost of putting flooring down once the carpet is up.

I have found a functional medicine doctor to help me detox my body of the mold once it’s out of the house. This of course will not be covered by insurance. It’s $145 a month plus I will need to pay out of pocket for whatever labs they order and if I need to be on any meds (which I’m hoping I don’t) then that will also likely be an additional cost.

But the real reason I’m setting up this is for the costs AFTER the remediation. All of that is expensive enough and we are struggling to pay for it after essentially two years of me not bringing in an income but because I am so sensitive to the mold and so sick already we will need to purge almost everything we own. Porous items can never be fully cleaned of mold spores and while majority of people could be around them and be fine, I cannot. At least not at this stage of illness. That means we will have to get rid of: ALL our furniture, almost all of our clothing, curtains, lampshades, anything made of untreated wood (shelving, etc). All of our books and anything else made of paper or cardboard.

And the worst part of all that? When it comes time to replace them- it has to all be new. Over 50% of homes in this country have mold in them and most people will never know because their bodies are able to detox the toxins they breathe in and it will never effect them. I’m unlucky enough that my body cannot naturally detox them. Which means I can not risk buying anything second hand.

I do not care about having ‘nice’ things but it feels impossible right now to even imagine being able to replace any of my stuff while trying to pay off my debt, pay my current bills, pay for help with my health, and making sure we all eat and have basic necessities.

If you read this insanely long novel- thank you. Everyone has been so incredibly kind to me during this time and I appreciate all of you who believed me from the start and tried in any possible way to help me.

Even if you can’t help financially (which I get with the state of this country right now), I want to let you all know you should never stop advocating for yourself. If you know something is wrong- keep fighting for help even if ‘professionals’ try to gaslight you or make you feel crazy. If I had not done all the research and demanded almost daily to be seen and to be taken seriously I do believe I would be dead right now. At the very least I would be rotting in bed with a feeding tube. Keep fighting for your health- without it you truly have nothing.