So, I bit the bullet and saw the gynecologist. And I have survived to regret it. I will never again care about a yeast infection or anything else that might possibly go away on its own (which I have been learning is just about anything). NOTHING, and I mean nothing, is worth going through what I went through this last week.
His office was so scented that when my mom brought the clipboard to the car for me to fill out the forms, the clipboard and the pen both reeked, and they could not be in the car with me. We also had to leave our coats and purses in the car to prevent that scent from invading everything.
I was inside for about 45 minutes. That was apparently the absolute fastest they could get me in and out for a simple swab.
(By the way, I wore my respirator the whole time.) Here is how the reaction progressed:
Day 1: During the appointment, I could feel excess mucus accumulating inside my sinuses and dripping down my throat. The trigeminal pain started as well. My eyes were burning like crazy. Upon leaving the office, I was in a hypomanic state. My skin was crawling. After a few hours of aggressive showering and a nasal rinse, I crashed into extreme exhuastion with abdominal bloating/pain and a migraine began at my left temple. If this had been the extent of it, I would see it as a tolerable reaction. (How sad is that?) But it really hadn't even begun yet.
Day 2: Burning eyes, altered taste, sinus pressure, burning chest after ingesting anything, exhaustion and stupor, too bloated to eat much, itchy ears and abdomen and raw mouth after eating, waves of goosebumps, vertigo, nausea, joint/muscle pain, complete lack of energy/motivation, worsening chest burning, bladder pain, in and out of consciousness, intense head pressure worsening as the day went on. And significantly, I was experiencing obsessive suicidality. I couldn't do anything about it, not even cry or talk about it. I was barely able to move outside of bathroom trips. But the degree of obsession with needing to die was intense.
Day 3: Blue lips, global head pain level 8-10 (feels like my brain will explode), nausea, vertigo, burning lips, teeth pain, bladder pain, chills, goosebumps, in and out of consciousness, most painful day so far, severe depression, no energy.
Day 4: Burning eyes/mouth/face, pressure in head and face/teeth increasing as the day progresses, more energy with deep depression, all symptoms worsening throughout the day, burning core, burning vulva, pounding heart, shortness of breath, lips burning, vertigo, blacking out all day but stayed conscious, orthostatic tachycardia/hypotension severe, intense suicidality with increased alertness.
Day 5: Depression/suicidality wore off as the day progressed along with the severe pressure in my brain. Orthostatic tachycardia/hypotension continued. A new weather-related migraine began, but I was back to myself mentally.
So, today would be day 8. I am not back to my supposed "baseline," but I am able to reflect back on what happened and its severity and its implications. I still feel pressure in my head, and I have a weather migraine wearing off, but nothing like the off-the-charts level pain I had.
I'm sharing based on the idea that you must give voice to the darkness if you ever hope to find the light. Also, I know that sharing my struggles can help others feel less alone. And I have never been one to hide the darker sides of chronic illness/pain.
I wrote this diary entry on day 2, before the stupor got so bad that I couldn't communicate. Of course, I wrote this at bedtime, when my mind is the most alert:
"Pain is horrible. Exploding head. Burning is horrible. Eating is intolerable. Obsessed with wanting to die, just like the night before the appointment and the day before the appointment and the night after the appointment.
I was suicidal because I knew how much the appointment would make me suffer, and now I am even more suicidal because I was so painfully right. Excruciating pain. Can barely tolerate food. Can't sleep. Passing out. I am at high risk of losing safe food/meds when I flare this badly. I cannot face another appointment. I cannot go through this suffering another time and keep wanting to live. I cannot face a life where leaving home or having exposures at home makes me suffer so badly. I am obsessed with needing to die before it is necessary to leave home again or I get exposed again. I do not belong on this Earth. It is not tolerable for me. The endlessly repeating agony has destroyed any desire to go on. I refuse. I refuse to go through this ever again.
I don't want any visits. I don't want any company. I need to die. I need it to stop.
And I am sure a lot of what I am feeling is from neuroinflammation from the reaction. The brain swells. It can cause severe depression along with the fog and the vertigo and the passing out and the feeling that my head will explode. It will go down, but I will inevitably run into more triggers and have to leave home many more times and get exposed at home many more times and go through this over and over again, on top of the immense pain, and I cannot face that life. I refuse. As soon as I think I can manage to keep going forward, I get crushed again. And I always will. There is no way out.
I don't want to problem solve. There is no solution. There is no way out of hell.
I never should have gone out. I should have waited and then tried to get another extension. I should never leave home again. I can think about nothing but the necessity of death. I am obsessed. Nothing is worth this level of suffering.
I know it won't stay this bad forever. But I'm not dumb enough to think it won't get this bad and worse over and over again for the rest of my life.
Life has become about avoiding, enduring, and distracting from pain and suffering. There is no pleasure. There is nothing to look forward to. There is no joy. There is no hope.
I don't care about anything. Nothing matters anymore besides death. I have no interest in the future or trying to fix or prevent anything. Only suicide, because I truly understand now that it is the only way out.
All of my hard earned gains have been lost. My quality sleep. My decreased head pain from magnesium. My digestive regularity. My food tolerance. My energy level and how to best use it. Feeling like I had a purpose and working toward it because I cared. Sticking to an exercise routine where I was seeing improvement, and caring about it. It is all wiped away. I care about nothing besides avoiding ever feeling like this again. Death is the only way to make it stop. I refuse to be strong and brave and resilient. I have endured too much. I have been pushed over the edge. I am too beaten down. I am empty. I am nothing. I deserve an end to this miserable life full of agony. I cannot keep pushing myself. I am weak. I am done. No more problem solving. No more fighting. No more pushing. No more enduring and surviving. Just let me die. Somehow, let me die."
So, that is the place I lived for the endless minutes and hours and days after exposure. Unfortunately, the one person I opened up to at this point was my mom, so she had to endure knowing about my obsessive thoughts. We both agree that I was not myself at all. That wasn't me talking. I was cold and resolute and determined and certain. Not my normal state when dealing with suicidal ideation.
Now, I have a pretty good understanding of how this came about, and I will share it with you. Because if I have learned anything from medical mistreatment and gaslighting for over two decades, it's that you must have a good understanding before sharing. And be careful who you share with. I do not intend to tell a mental health professional or any other medical professional about this episode. That is how you get labeled a psych case. That is how you stop being treated as a "medical" patient, and doctors stop believing your self-reported symptoms. If they knew about this episode, they would lose all ability to see me as a rational human being with any level of intelligence or awareness of my situation. I have been through it countless times. These types of episodes have contributed to my medical trauma and distrust of physicians.
So, here's the explanation, with scientific articles to back it up. Unfortunately, I cannot share a single article that sums up exactly how and why this experience came about, but if you put the pieces together, you can see how easily it happened.
First, you have to understand that mast cell activation and all of the chemical mediators they release when triggered to degranulate cause inflammation. This includes neuroinflammation. https://www.sciencedirect.com/science/article/abs/pii/S0149763417300295
"Mast cells reside in the brain and are an important source of inflammatory molecules. Mast cell interactions with glial cells and neurons result in the release of mediators such as cytokines, proteases and reactive oxygen species. During neuroinflammation, excessive levels of these mediators can influence neurogenesis, neurodegeneration and blood-brain barrier (BBB) permeability. Mast cells are considered first responders and are able to initiate and magnify immune responses in the brain."
Next, this article focuses on more common diseases that can cause neuroinflammation, but it explains the association between neuroinflammation and depression: https://www.researchgate.net/publication/299342763_Disease-Induced_Neuroinflammation_and_Depression
"High rates of comorbidity between depression and specific medical disorders, such as, stroke, chronic pain conditions, diabetes mellitus, and human immunodeficiency virus (HIV) infection, have been extensively reported. In this review, we discuss how these medical disorders may predispose an individual to develop depression by examining the impact of these disorders on some hallmarks of neuroinflammation known to be impaired in depressed patients: altered permeability of the blood brain barrier, immune cells infiltration, activated microglia, increased cytokines production, and the role of inflammasomes. In all four pathologies, blood brain barrier integrity was altered, allowing the infiltration of peripheral factors, known to activate resident microglia."
Finally, this article specifically focuses on how brain inflammation as the underlying cause of suicidality in major depression:
https://www.sciencedaily.com/releases/2017/09/170921104245.htm
"In the study, Dr. Peter Talbot and colleagues found that the increase in the inflammatory marker was present specifically in patients with MDD who were experiencing suicidal thoughts, pinning the role of inflammation to suicidality rather than a diagnosis of MDD itself."
So, I think given this information, it is not a huge leap to make that a massive mast cell degranulation event leading to inflammatory mediators flooding the brain and seeping through the blood brain barrier could lead to overwhelming, all-consuming suicidality.
So, there's my case. (Sorry for the mini lit review. It felt important to include.)
The people I feel I owe an explanation to the most are the people I am closest to in life. But they are also the ones that don't require an explanation. They simply believe me and accept me. And for that, I am truly grateful.
I am still clearly coping with the after effects, mainly persistent head pain/pressure, photophobia, widespread burning, bladder pain, orthostatic symptoms (POTS), and lethargy/stuporous states. Emotionally, it is more coping with the aftermath. I am back to myself. I'm not saying that's great, but it's a heck of a lot better than the hell I was living in. You could tell the suicidality had subsided when I cleaned both the toilet and the bathtub. Those are certainly not tasks you would undertake if you had no intention of living.
But the reality is, now I know that this type of reaction is possible, and that makes exposures even more dangerous. I have no intention of purposefully exposing myself to anything in the foreseeable future.
So, my next psychiatry appointment will be over the phone (thank to my mom pleading my case).
Beyond that, my mast cell specialist has actually taken medical leave followed by early retirement. I no longer have a doctor on my side. Which probably doesn't matter much since I cannot tolerate more medicine trials, and I certainly can't risk any of the "serious" treatments like biologics or chemo. I can't even take a freaking compounded Benadryl or step foot in a hospital, for god's sake.
So, I am so very much on my own. But the reality is, no doctor has been able to figure me out or help me in so many years. I am the only one who can help me. In the last month, I solved both my daily laxative and my discontinued cereal dilemmas on my own. There is not a doctor that could have solved these problems for me.
For a daily laxative, I finally figured out that I could essentially compound my own magnesium oxide powder into the clear hypromellose capsules. I figured out the dose I need, and problem solved. It took time and painful experimentation, but honestly, no doctor would have recommended that to me.
When my cereal was discontinued, I also had to experiment and figure it out for myself. I developed a recipe for oat flour biscuits that I can actually tolerate! The bad news is that my weight has dropped off and is consistently around 92 lbs. I am officially 20 lbs. under the minimum weight for my height. It's not great. I am starving. But I am also constantly eating what I can and doing my best.
In case anyone else is struggling and may be helped, here is my recipe, that I am certain could be adapted for other flours/oils/milks:
Oat Flour Biscuits
Makes 45 biscuits
Preheat oven to 350°.
Whisk these together:
2 cups almond milk (Edited: I use Elmhurst oat milk now)
2/3 cup olive oil (Edited: I use grapeseed oil now)
Add, using hand mixer:
4 cups oat flour (or try another flour)
1 t. salt (optional, for taste)
1 t. baking soda
Mix well. Drop by spoonfuls onto baking sheet. Bake for 12 minutes. Remove to rack to cool completely.
It is a bit hard to get down, as I find them to be quite dense. It takes small bites and a slow pace for me and my gastroparesis. Also plenty of almond milk to rinse it down. But they have become my absolute favorite food! Never in my life did this former sugarholic think I could ever enjoy a baked good without sweetener. But they are delicious! They look a bit like a cookie but taste kind of like an English muffin.
Anyway, this has only further solidified for me the fact that doctors cannot help me. Only I can solve the puzzle that is me. And I am sure my recent experience has added to my medical-related trauma. That is only natural given the severity of my prolonged reaction.
But I will say that, like last time, I don't know how many more body-on-fire, heart pounding, insomniac, face exploding, and now suicidal reactions I can handle. This situation is not tenable. And yet, there is no alternative. There really is no way out. I don't even have a freaking doctor anymore. Hope is hard to find. For now, it is just embracing safety at home. That is all there is.
I know a lot of people don't really believe on sharing the negative parts of their experiences, chronic illness or not. (Especially those DNRS patients who aren't allowed to even think about their illness or their symptoms, much less express them.) So, they shouldn't read my blog, because I keep it real here. I always will. I don't live in denial. I accept all sides of my reality. In addition, I have a deep appreciation for genuine relationships that are not based on some fake, positivity-only version of your life. I appreciate every person that goes through the ups and downs with me, even when they are mostly downs. And I am so grateful for my husband for helping me through the crisis over the weekend and weathering every storm with me. I can only hope that this does not become a regular reaction for me, and it was just associated with a specific chemical that I will NEVER encounter again. I certainly will not be in environments that scented very often in my life. I do not have hopes for magical/impossible cures and healing in my life. All I can do is get through each challenge and obstacle and torture as it comes.
I do not post these blogs looking for sympathy. I just hope to promote better understanding.
As always, thank you for reading. Thank you for caring.
