I’ve been to over 50 doctors’ appointments so far this year, all of which inevitably involved a blood pressure test. The physicians typically just scrunch up their face ask if I’ve been tested for anemia. I reply, “I think so,” and we move on.
Last month, a new doctor took my blood pressure and was clearly disturbed. I told her that I tend to have low blood pressure, usually around 80/50. She shook her head. “No,” she said, “75/38 is NOT low; it’s critically low. Do you feel how hard your heart is pumping? A resting heart rate of 110 is NOT good either. And your oxygen saturation is only 86%?!”
She asked me to raise my arm and pump my fist; my blood pressure dropped, and heart rate rose. She had me stand up, and then raise and lower my heels; blood pressure sank, heart rate up, and my vision went black. That’s been my “normal” for as long as I can remember. The doctor became upset, asking me about my hydration, exercise and salt consumption.
She drew my blood and it flowed like molasses–a tube filled with thick, murky Merlot. As I rhythmically pumped my fist to help force some blood into the vial, she looked me in the eyes and, with a fierceness I’ve never in a physician, said, “blood should be a rushing bright red. Yours doesn’t have any oxygen. That’s why it looks so swampy. And that’s why you have brain fog. Your brain isn’t getting any oxygen…”
I left thoroughly pissed off. I eat a balance diet and I exercised daily up until I physically couldn’t, about eight months ago. I’ve had low blood pressure for several years and none of my doctors have ever made a big fuss about it, until now. I am doing everything right health-wise, and I’m functioning mostly okay.
At least, that’s what I thought.
My pulmonologist has never seen the recurrence of valley fever in his 50 years of medicine and my infectious disease doctor has only seen it once in 30 years. My doctors are perplexed at how–in retrospect–a string of seemingly random symptoms have presented themselves one-by-one over the last three years, a cloak of mild discomfort hiding some mysterious ailment, which everyone thought was all in my head.
When I talked to a second pulmonologist several weeks ago, he had an interesting hypothesis: the valley fever infection never actually went away.
It gave me something to think about, but I wasn’t too concerned. I’m alive, so does it really matter if the infection has been chilling in my bloodstream, my bones or my cranial fluids for the last three years?
Since then, I’ve had six different doctors confirm that my extremely high titre levels, the scars in my scans, and the treatment-resistant nature of the infection are consistent with three years of untreated fungal growth.
Having an MD review your medical records and state that the past three years of symptoms are very much consistent with chronic, disseminated infection is humbling. I quickly snapped out of my denial and have since been struggling to put the pieces of my life together.
As I accept the possibility, I am beginning to think that this silent infection has been far more destructive than I ever could have realized.
A few weeks ago, a visiting relative referenced my aunt’s wedding from seven months prior, which I don’t remember, aside from what I can gauge from the family photo–basically what people were wearing. If it weren’t for excessive journaling lately, I don’t think I would even recall that interaction with my relative.
A week later, my best friend brought up details from her wedding a year ago, which I have no recollection of attending. Being my best friend’s maid of honor should be one the most memorable moments of my life and the only artifacts I have are her Bridesmaid gift and a picture of she and I together, smiling.
A few days ago, my parents’ dog developed severe pancreatitis suddenly and had to be put down. When my mom suggested everyone write down their favorite memories of our sweet pup, I was devastated to realize my only two memories of Misha are the first time I met the playful little boy with oversized paws and then how he trotted proudly for a few steps on before realizing he was too weak to go for one last walk.
My boyfriend has been teasing me for years about becoming increasingly absent-minded and forgetful, saying things like, “You weren’t like this when we first met.” and “I think your hamster went on strike.”
I’ve always gotten defensive. Throughout my entire life, I’ve always had a better memory than anyone I know. If I don’t recall an event, I assume I wasn’t there. If I don’t know someone’s name, it’s because we’ve never met. If I’m having trouble following a conversation, it’s because the other person isn’t being clear. I’ve been shrugging it off and pushing it away, forgetting individual instances of a pattern that, I’m certain now, has become vividly clear to those around me. I forget nearly everything, and I meet any confrontation with vicious denial. I push away the very people who are trying to help.
I’m beginning to wonder if maybe brain hasn’t functioning optimally for the last three years–if my short-term memories haven’t been transferred over to long-term storage.
My mom has spent the last 25 years telling stories about my incredible memory and attention-to-detail, like the time when I was three and tugged on my mom’s dress and whispered, “That’s the lady in the polka dot dress we met for breakfast last year.”
I wasn’t having a “brain fart” every two minutes before I first developed valley fever, nor forgetting the names of family members and the current circumstances of my best friends’ lives. I never before had trouble finding words or following conversations.
Upon my first diagnosis in March 2015, I was told the symptoms of valley fever last for years, so I learned to adjust as I waited for things to improve. I redefined my new “normal” and accepted the constant brain fog as a symptom that would pass, ultimately blinding myself to the fact that nothing was improving. In fact, the symptoms have gotten much worse across time, and I’ve been reluctant to listen when my friends and family have brought it up.
During my time of acute illness in 2015, I learned to compensate. When I wasn’t following a conversation, I looked for context clues or made a joke. When I was tired, I would say that I hadn’t slept well the prior night, whether or not that was actually true. The filling-in-the-blanks process was so automatic that I failed to understand what I was doing… what I am still doing.
A few weeks ago, I reviewed my medical records with my primary care physician. I’ve visited her office 51 times since the valley fever supposedly resolved in May 2015 (averaging 1.34 times per month). Documented symptoms during this time include: memory loss, blackouts, extreme fatigue, unrestful sleep, rashes, eye infections, sinus infections, leukocytosis, migraines, vision loss, fainting, abdominal pain, swollen joints, enlarged lymph nodes, depreciated lung capacity, myasthenia, pituitary tumor, ovarian cysts, confusion, asymmetric radial pulse, and suspected transient ischemic attacks.
The miscellaneous symptoms are all sitting together in a clean, compact list and I am trying to understand why they didn’t raise red flags for anyone. Prior to valley fever, my medical history was limited to a bronchial infection at age 17, and yet I’m pretty sure everyone thought I was a hypochondriac. Vision is 20/20 in the rear-view mirror, isn’t it?
Going back to the initial blood pressure anecdote, I had “healthy” normal blood pressure up until the valley fever. Reviewing my records, my blood pressure has been consistently dangerously low (<80/40) for the last four years. As the doctor put it, “If you have a garden hose set to half-pressure, it’s going to take a long time for your garden to get the water it needs. When the brain is receiving only half of the oxygen it needs for optimal functioning, the garden up there begins to fail.”
She suspects the valley fever infection has compromised my circulatory system, likely resulting in cerebral hypoxia or mini strokes, thought I’m waiting to verify with my neurologist. Both can be caused by symptomatic chronic low blood pressure. The standing blackouts and headaches are not, in fact, a gifts bestowed to me by my morning meditation practice. The drowsiness, forgetfulness and frequent yawning are not because “maybe I’m depressed without actually feeling like I’m depressed” or because I didn’t get enough sleep the night before. It’s embarrassing how naive I have been.
During this same three-year period, I don’t remember the weddings, birthdays, deaths, anniversaries or a single everyday moment that made me smile. With prompting, I can sometimes remember what I had for lunch. Highly emotional events stick around for as long as I play them on repeat in my mind, but no longer. My journal helps me keep up with the the days’ happenings, but it’s not sufficient because I am unable to tie current events and feelings to those of the past.
I abruptly stopped writing shortly before my initial diagnosis in 2015 and all attempts to write have been met with an overwhelming aversion. I wonder now if it’s because my mind has been trapped in the shallow tide pool where only current thoughts and emotions are accessible. As a deep thinker, perhaps I unwittingly turned away from anything that required that level of deep thinking that I not longer felt capable of.
I stopped by a family reunion get together last month and burst into tears because I knew that I knew everyone there intimately, but they all felt like old acquaintances. I didn’t remember their jobs, hobbies, kids’ names or our past interactions. I felt so incredibly out-of-place and isolated, and I couldn’t wrap my head around why.
I’ve been to countless neurologist appointments over the last three years because my boyfriend has been very insistent that my memory, attention, and conversation skills have compromised. I begrudgingly attended each appointment, denying any awareness of memory or cognition problems. I couldn’t see it. And I couldn’t hold back tears as the doctor listed the most likely culprits: epilepsy, narcolepsy, and transient ischemic attacks. “I’m healthy,” I whispered to myself, “this can’t be right.”
I keep wondering if my garden hose has had this huge kink in it for the past 1,300 days and I’m just now coming out of the denial stage to realize that all my beloved plants are dead.
My grandfather has Alzheimer’s disease, and it has been heartbreaking to show up to events and have my grandmother explain who I am. My grandpa is great at playing it off by calling people “buddy,” telling jokes, and sticking to topics he knows. From the outside, though, it is so incredibly obvious that he’s struggling.
A friend recently said that I’ve become a shell of the person I used to be. She referenced several events I can’t for the life of me recall and I feel like the most horrible person in the world for not remembering. How do you apologize for things that you don’t remember doing and which seem completely out-of-character? I feel absolutely devastated and don’t know how to move forward.
Why would I forget these things that matter so much to me? Big events should qualify as flashbulb memories, which are supposed to be permanently ingrained in the mind. The migraines are nothing compared to the pain of realizing that bits of your mind have been slowly slipping away.
Perhaps the worst part is that I don’t know whether those memories are buried deep, waiting to be snatched up by newly branching synapses, or if they were never even captured in the first place. Every doctor I’ve asked has evaded the question, so I’m guessing my last three and a half years are forever lost. As I walked out of her office yesterday, my boyfriend asked the infectious disease doctor if I would ever regain the ability to remember things again. “Once the valley fever is gone,” she assured us, “it should begin to normalize.”
Thinking back to the doctor who scolded me for my viscous, oxygen-deprived blood, I wonder whether the chronically low blood pressure has caused me to do the same things my grandfather is guilty of. When I don’t remember events, conversations, or names, do I try to hide it? Do I nod in agreement, omit names, and try my best to offer safe contributions as my heart pumps furiously in futile attempts to send a bit of extra oxygen north?
Have I become so caught up in collecting clues and breadcrumbs to use as easy talking points that I stop listening to the person in front of me? I haven’t personally noticed it, but perhaps my self-awareness isn’t functioning optimally and I truly have become a shell of the person I once was.
Perhaps it’s obvious from the outside that I’m not following the conversation but, since I don’t have dementia, it is interpreted as me simply not caring.
I’ve always prided myself on being a kind, loyal, and caring friend. All my friends have been busy with school and work, and I completely understand that. But I haven’t seen anyone in months and I wonder now whether they’ve prioritized other things over spending time with me because I haven’t been contributing to conversations in meaningful ways or remembering the key details of their lives. Maybe I haven’t been a good friend.
I feel so incredibly sad knowing that I have hurt the people I love. I don’t know what I can offer to make things right, and I don’t know whether the friends I’ve pushed away will give me the chance to repair the damage I’ve caused. What do you say when you need to apologize for things you did, but don’t remember? How do you move forward in a relationship when your last clear memory is nearly four-years-old?
The next step is to up the ante on my treatment since my symptoms have worsened in conjunction with medication. This includes a lumbar puncture, full body CT scan, brain MRA, and prescription reevaluation… and loads of extra rest. I’m hoping and praying that these tests rule out coccidioidal meningitis and carotid artery disease, which are currently my doctors’ biggest concerns. If it’s simply a stubborn and highly mutated strain, the doctors suspect I will make a full recovery within 18 to 24 months.
In conclusion, I would never wish this disease on my worst enemy. I am quite certain that in the thesaurus of life, coccidioidomycosis is synonymous with hell.
I hope you get on the path to recovery soon. If there’s anything — and I do mean anything — I can do for you to help you, just let me know.
Thanks! Maybe send some positive vibes my ways. I’m working with several of the best doctors in the country who are bending over backwards for me, so hopefully I won’t die. Ha! It will make a good story one of these days so I’m just trying to roll with the punches.