My husband and I have been Out Of Office this week. We both used PTO to take some time to try to rest and recover from the busyness of our current life.
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I would love to say that we have actually been resting, but that would be a lie. However, by temporarily removing our income-producing jobs from both of our plates, it has felt like rest even though we haven’t really been resting.
Here is the latest update . . .
Physical Health:
Here is a reminder of the tentative plan for healing and the parts that have been completed:
As usual, a lot has happened in the last few weeks. The goal is to begin the mold toxicity treatment again. However, since my body has been off of both bacteria and mold treatments for a few months as we were trying to get my body back to baseline, the bacteria and mold have both come back stronger than ever. We have increased a supplement that I have been on for years in the hopes that it will help kill enough of the bacteria in my body to be able to tackle mold again before we go back to bacteria full-time. However, my body is even more sensitive to oxalates (from mold) than we originally suspected as evidenced by the last few months of increased intense abdominal pain and the probable rare autoimmune condition that targets the skin in my genital area and is exacerbated by oxalates.
Due to the complications we have encountered, my doctor asked some of his colleagues from around the country what has contributed to their success when they have worked with patients like me whose bodies are extremely sensitive to treatment protocols. His colleagues indicated that there are a couple of prescription medications that have worked for many of their patients to help their bodies accept treatment protocols. Of course, we have no idea if my body will accept these prescription medications, but the medications are only taken at a microdosing level, so we are hopeful. Since he is a functional medicine chiropractor, he cannot prescribe medication, so he had me schedule an appointment with the Nurse Practitioner in his practice to discuss the prescription medication we are going to try first. We had the appointment this week, and she sent in the prescription in the hopes that it will reduce my body’s inflammatory response. Since the medication will be at a microdosing level, we had to get the prescription filled at a compounding pharmacy in our area (not covered by medical insurance, of course). I hope to try my first dose this weekend or early next week. Please pray for us and/or send positive energy our way for a successful attempt with this medication, and that it helps us to eventually get back to our regular treatment plan.
Home Environment:
We have also been spending our OOO time this week removing the mulch in our entire yard and replacing it with 3.5 tons of rock. (By we, I mean my husband. 😬) I have been “helping” by going outside on occasion and giving my opinion and changing up the plans. I am (mostly) kidding. 🤦♀️ He says that my support has been greatly appreciated. 🤣
The reason my husband has been doing this work is because mulch is terrible for people with mold toxicity. Mulch is a breeding ground for mold, and my husband wants to make sure that we are doing everything we can on both the inside and outside of our home to give me the best chance of survival and optimal healing.
We also need to have some work done on the shower in our primary bathroom, so we had a professional give us a quote for some options there. We don’t want to spend a lot of money on our home right now in order to save money for my current and future medical expenses, but some shower repairs are necessary at this point. And, as I am sure you are aware, shower repairs that include the words “custom” and “tile” in the same sentence are not cheap regardless of what is being repaired.
In addition, I have spent as much time as possible this week trying to catch up on some other items inside our home. All of these tasks, combined with multiple medical appointments, have taken up most of our “rest” time.
Emotional Health:
Using our OOO time for these purposes instead of using it for more enjoyable activities is something that is emotionally difficult for me at times. One of our dreams for our life together was to be able to keep traveling together. Our hope is that we eventually have the privilege of traveling again, but that dream is in the uncertain category for now. Each time we take time off from our income-producing jobs to complete tasks for my survival, it brings up feelings that need to be felt and processed. There have been quite a few tears this week as I have felt like a burden again in so many ways. I know that these feelings are related to the trauma we have experienced — and continue to experience — and I know that I am not alone in feeling this way. Many, many, many people who are living with an invisible, complex chronic illness feel this way. I know in my mind that I am not the burden. The chronic illness is the burden. But, sometimes, the heart does not listen to the mind. Fortunately, I have a husband who understands and is always willing to provide extra reassurance when I am needing the reminder
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On a separate note, we could certainly empathize this week with someone we know. This person’s wife has been really struggling with her health for the last 2-3 months. They have been to the Emergency Room at least 3 times and have had appointments with specialist after specialist with no answers. They have been prescribed multiple prescription medications, and those medications have only made the situation worse. Eventually, after feeling like they had no other choice, he and his wife sought out an alternative health practitioner for guidance. This practitioner quickly identified what he thought the problem was and said that the wife would need surgery. The practitioner told them to go back to the ER, but not to tell the ER who told them of this diagnosis, because this practitioner knew that the ER doctor would not take them seriously if they knew the origin of the potential diagnosis. The husband and wife went back to the ER, and the ER doctor tried to do the same tests and prescribe the same medication from previous visits to the ER, so the couple told the ER doctor what they thought was going on and that they wanted an MRI. Eventually, after much pushback, the ER doctor relented and ordered an MRI. Sure enough, the alternative health practitioner was correct in his diagnosis. The wife was finally given a diagnosis from a conventional medical practitioner, and she will now likely need surgery. She would not have found the root cause of the problem without the help of the alternative health practitioner.
To be clear, it shouldn’t be hard to believe the patient. It shouldn’t be hard for a patient to get adequate medical care. It shouldn’t be hard for medical practitioners to work together for the benefit of the patient.
Our medical care system is broken.
Brutal. Having to use our OOO time for tasks related to keeping me alive instead of for more enjoyable tasks. Feeling like a burden. Our broken medical care system.
Beautiful. Having the PTO to use as we complete tasks aimed at keeping me alive. My husband’s commitment to doing whatever it takes to give me the best chance of survival and optimal healing. Remembering that the invisible, complex chronic illness is the burden and not me. Reassurance from my husband on the most difficult days. Medical practitioners who listen to the patient, search for the root cause, and persevere through the obstacles.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life
This Brutiful Life 