My Left Foot

CW: I have no idea if I can blur images but you’re going to see some allergic reactions in the following entry. Proceed at your own risk.

A black button with white text that states, “allergic to you.”

One would think Sunday would be a day off from medical issues. But the chronically ill never get a day off, it seems.

I had to visit urgent care a few weeks ago, on a Sunday morning, for multiple, inflamed bug bites, the worst of which were on my left foot. I was already trying oral diphenhydramine, spray of the same name, and prescription cortisone cream, in addition to NSAIDS. My left foot was burning with a 6/10 pain intensity.

More bites seemed to appear between Saturday morning and Sunday morning. We attended a performance at the outdoor Shakespeare festival the preceding Thursday and I had noticed a few random bug bites on my arm prior to that night.

The next day, I forgot what day it was when I was trying to ask the CT technician how his week was. I started thinking, and then in a horrified tone, said, “Is it Monday???” He replied, “As far as I’m aware.” In my defense, the day prior had turned into a work day between the urgent care visit and paperwork that had a strict deadline. So it wasn’t a day of rest but holy cats.

I also blame what is known as “brain fog” for my lack of awareness of what day it was. If I didn’t have alarms set I would forget all my appointments. And when to take my vitamins. And when to put my important eye drops in. I’m still getting it done. But there are a lot more lists involved. And I email myself quite a lot so that I don’t forget things.

Brain fog can be related to two of the three things I believe I will (eventually) have diagnoses for. One of them is known as Mast Cell Activation Syndrome (MCAS). It’s too complex for me to fully understand, but the types of symptoms I have experienced are definitely a match.

My more haywire types of allergic reactions have been going on since I unsuccessfully tried immunotherapy in 2013. Now, it appears the unpredictable reactions are back with a vengeance. I am trying to figure out how to blur photos in case you don’t want to see the types of allergic reactions I was having to things I was not allergic to when I tried allergy shots. Here goes nothing:

A picture of very red, flushed hands sitting on a pair of bright blue pants.
I did an experiment with one shot of vodka. Which I am not allergic to. Good times.

Yeah, sorry. I couldn’t figure it out. I can only do research on my phone and YouTube videos are not my friend right now. Apologies.

I woke up at 4am this morning, did the dishes, fed the cats. Now I’m trying to finish this entry for the umpteenth time before I try for more sleep.

From my readings on a Discord channel regarding certain conditions, I heard of something called a “3am histamine dump.” It seems our levels of histamine rise sometime before dawn. If you’re like me and you have severe allergies (or a potential mast cell issue), the rise in histamine can wake you up and cause all kinds of symptoms.

So the mystery of why I wake up consistently between 3 and 4:30am might finally be solved! I always thought it was insomnia due to a mood disorder.

Speaking of said mood disorder, I am working on actually being tested to confirm what mental conditions I have. I watched someone very close to me struggle with a misdiagnosis for almost three years. Then all of my health issues can glaringly into focus, and folks on the internet started asking me if I had a certain diagnosis because of our similar health histories.

It’s almost like all of these things are connected. Anyhow, I’m establishing with a behavioral health center via zoom next month to get to the bottom of some of this. Childhood developmental issues clearly indicate a diagnosis that wasn’t talked about much in the early 80s. Pair that with my present symptoms and a revised diagnosis makes a lot more sense.

My allergist also explained that just because I’m not technically allergic to some things doesn’t mean I can’t have a sensitivity to them. I explained my history of delayed, severe allergic reactions dating back to my short-lived immunotherapy days. It is expected that some patients will experience anaphylaxis after receiving an allergy shot. It is not as normal for that reaction to be delayed by 8 or 9 hours.

Which brings me back to the big bites. The only time I was outside and my feet were prone to bites was that fateful Thursday evening. The bites presented over 24 hours later. But the opportunity to see “Little Shop of Horrors” at the Idaho Shakespeare Festival? WORTH IT. And I would do it again.

A very pale foot with many inflamed bug bites, most prominently on the ankle.
Not the type of foot pic you were looking for. They got worse after this.

But next time I’ll cover my feet.


Today, in the “Whose job is it, anyway?”files…

My son’s secondary insurance was notified of his name change two months ago via an interface with SSA and a call from yours truly. I have the updated card in hand. Same number, only difference is the name.
His local pharmacy is citing a name mismatch on the secondary insurance. Even though I have the updated card in hand.
So either the secondary insurance issued a card without updating his profile or didn’t bother to communicate the update to their managing pharmacy. But I also wasn’t able to register him for a transportation benefit under his correct name. So something’s definitely wonky somewhere.

Worst case scenario: I have to have all of his medical organizations re-bill all of his claims for the last three months AFTER the secondary insurance folks fix the error. Like I don’t have enough medical paperwork and issues to deal with. It’s nothing that can’t be fixed, but there is absolutely no reason for it.

But wait, there’s more…

My insurance company switched my care manager to someone else. They notified my boyfriend instead of me even though they really should have my number on file by now.

A large orange and white tomcat yawns. He is sitting on a concrete surface with grass in the background.
I’m going to end up as salty as this gent right here.

So I spoke with two of my insurance folks for about 45 minutes this afternoon. They previously demanded my provider write a letter stating why I need to go out of network, out of state, and who specifically I need to go to. They told me this only after they gave me a list of various providers to call in Utah that were in-network. And guess what? No one treats what we think I have. Shocking.

So my migraine doc kindly obliged and wrote them a letter. But now they have a more formal preauthorization process that we had to instigate that takes 1-2 weeks. So they’re going to have to bother my poor migraine guy AGAIN about this in the more formal process.

The ENT suggested I see an allergist at University of Utah while I was down there. I knew of one who appeared to be in network with my primary insurance. I will still have to get a formal referral from a provider here and a preauthorization though my secondary insurance to see the allergist. I sent an email to my insurance company yesterday, to make sure the provider was in fact in-network. The web search said outside of Idaho for me, he was.

I didn’t have time or the capability of looking at the emailed response. So while I had the insurance folks on the phone, I asked the gent starting the formal preauthorization for the neurologist to double check my work. He verified the provider was in network.

I get off the phone, check the email from the insurance through the portal. The email says the allergist I inquired about is not in network.


I sent a screenshot of what I could see on my end and told the rep I needed clarification since I had JUST RECEIVED DIRECTLY CONFLICTING INFORMATION.

I’m dizzy, my eyes are blurry, the smoke trapped in the valley is wreaking havoc on every part of me. I wish so much that drinking (day or otherwise) didn’t make my symptoms worse.

The migraine gent couldn’t get a test he thought I might need scheduled locally. I had seen some improvement with sodium chloride supplements and a different type of magnesium than I had taken previously. He wanted me to discontinue the supplements so I could get a valid result on the test, but now says I can ask for the test at the University once I get down there.

Whenever that happens. If it happens that the insurance Gods smile upon me instead of their usual habit of smiting me regarding more complex care. I feel like I’m jumping through flaming hoops in the seventh circle of hell right now, and I am quite dizzy on the daily as it is, please and thank you.

It will take 1-2 weeks for the insurance to even authorize my visits to the out of network neurologist, and it took about a week and a half for me to get the helpful supplements out of my system and become a weebly, wobbly mess again.

Some might say I don’t need to be any saltier.

I disagree.

I’m stating my salt supplements again to regain some function while we figure the rest of this out. Keep in mind, the OBGYN and ENT will want to schedule surgery sometime. Follow up ultrasound for endometriosis is early November and sinus surgery won’t be scheduled until January at the earliest…

So in the meantime, I’m staying salty AF for as long as possible.

A salt shaker sits on a counter. The middle of the shaker is clear and you can see a person reflected in the metal top of the shaker.
I can see myself reflected in the salt shaker. It’s quite fitting. I am getting saltier by the day.

Setting the Record(s) Straight

CW: medical trauma, talk of mental health issues including suicide and such. Proceed with caution.

The rumors about my surgeries and mental maladies have been greatly exaggerated. So I thought I should clear the air.

I have never had any kind of implant. Unless aliens abducted me without my awareness, which is another distinct possibility the stranger my medical problems get.

But I jest. And digress.

My favorite X-Ray mistake to come out of this whole mess. I look like the Terminator Librarian.

In “The X-Files,” and other sci-fi shows, the aliens give you very different implants than the ones my doctors thought I had. They do not enhance the bosom (though I suspect there is probably an adult film or probably several on this subject that I am ignorant of).

I had an X-ray to determine what type and degree of scoliosis I had. There were some incidental findings. Namely, a cyst-like structure in the pelvis, and a calcified left breast implant.

See italicized statement above. My mammogram three weeks prior showed no abnormalities. I messaged my doctor saying well, I’m pretty sure that’s my spine, but I don’t have implants.

Before he saw the message, he kindly offered me a referral to a breast specialist. You know, to take care of that left implant I don’t have. And hopefully solve all that ailed me.

He then saw the message and clarified with the radiologist that the calcified mass is in my spleen. Likely from an injury I don’t remember having.

Like I said. Aliens.

I had to write a letter to social security explaining the misinterpretation by the radiologist. So now the government knows ALL of my secrets.

I corrected the record after the very nice rheumatologist saw me. He was ALSO hoping that the issue was the implant I didn’t have. I had to send a form in to set the record straight with my primary health care system, and then I realized it was wrong in TWO places.

So I sent in another form.

I also submitted another correction. I went to look on MyChart at prior visits. I hoped my former physician documented when I first complained of severe pain in the spleen area. Instead, I found an alarming reason for our first visit that was probably a clerical error, because no discussion of depression or a safety plan was included in the notes. It’s even says that my affect was normal and I am “pleasant.” Which is very odd considering they wrote “suicidal ideation” in the “reason for visit” section.

I was there to establish for troubling, complex medical issues. Including debilitating light sensitivity. This primary was nicer than the last one about telling me that she thought my issues were mental. But she persisted in doing so anyway.

So I get warned by ophthalmologists and legally blind folks that going on psychiatric meds with severe dry eye could result in total, legal blindness. But my primary doctors all want me to go back on psychiatric medication.

I somehow don’t think that going completely blind will make me less anxious. But what do I know?

I’ve printed out the email from my medication manager stating that our options are quite limited because of the physical issue of dry eye syndrome. In case anyone tries to bring this up again.

Speaking of my mental illnesses, I have only been hospitalized once for those. There were extremely stressful mitigating circumstances surrounding the hospitalization, for sure. But I would have been able to stay out of the hospital had I not been under-diagnosed and given the wrong medication for what hadn’t yet been diagnosed.

Antidepressants and anti-anxiety medications can work well for some people who have anxiety disorders. Throw a mood disorder in the mix, however, and it’s an entirely different ballgame.

The medication provider at the time eventually started clueing in that a mood disorder might be present in addition to the obsessive compulsive disorder. He even tried prescribing a mood stabilizer right before I went into the hospital.

But lucky, lucky me. I had an allergic reaction to that medication. In the ER, I was given an extremely painful shot in my stomach in the hopes of warding off anaphylaxis. They then prescribed prednisone to stay on the safe side.

My new favorite button that I’m hoping my allergist will laugh at. Found at Hot Topic.

But steroids apparently exacerbated my insomnia and anxiety. Into the hospital I went. I stayed on my psychiatric medications despite horrible and unusual side effects for years, so I would never have to be hospitalized again.

So one hospitalization for mental health, I’ve learned, is not nearly enough for you to be considered permanently disabled, no matter what diagnoses you have. But apparently those diagnoses are reason enough for primary providers to invalidate everything you say for the rest of your life. Despite piles of documented physical issues.

At my last visit I stated what I thought I needed to be evaluated for. I also said the ENT wanted to eliminate the possibility of mold allergies before treating me with antibiotics for 4-6 weeks. If the chronic sinusitis doesn’t resolve he may need to do surgery.

I was then asked if it was my anxiety that was making me dizzy.

No. Pretty sure that’s not part of the criteria listed in the DSM-5 for my mental disorders. I have been chasing my own tail and jumping through fiery hoops of red tape despite vestibular issues. Maybe that’s causing some of it…

My eyes hurt like hell at the moment but I am determined to set the record straight, and write my truth.

Because truth is stranger than fiction, and the truth is out there.

Way out there.

Call me Itis

Because something is always inflamed.

There is no God or Goddess named Itis that I know of. There is Iris, which aside from being an excellent GooGoo Dolls song, is a freaking awesome name. It seems in mythology she was a mail carrier for the Gods. There is also the Egyptian Goddess Isis, who I read has healing powers.

But on bad days. I can’t heal myself. In a crash, I can’t seem to resurrect myself from my bed.

Here is a list of some of the types of inflammation that have plagued me over the years. Bursitis, dermatitis, arthritis, tendinitis, costochronditis, sinusitis, keratitis, uveitis. That’s probably not all of them. I don’t know yet what’s causing the neuropathy in my hands and feet, but it wouldn’t surprise me at all if it was another type of inflammation.

Inflammation may also be part of why my eyes are so dry. They call that one sicca. It may not always make me feel sicca, but it can be difficult to manage. I also have a lovely ganglion cyst on my non-dominant hand and a cyst in an ankle. They think those are a result of inflammation, too.

The only place they can’t seem to find inflammation is where my former ophthalmologist suspected it: in my blood. He said “lupus” on three separate visits. Whatever this is looks like lupus, but isn’t lupus.

If I ever start performing again, I will name my band Looks Like Lupus.

After my cardiac stress test came out normal, I asked the cardiologist why I’m like this. He told me that post-viral inflammation can last for years. Shingles had me in bed, staring at the wall, nearly nonfunctional for at least a week. Then swelling started in my feet, along with episodes of extreme fatigue.

Even when I returned to work probably too soon after the shingles, I was falling asleep at my desk. If I didn’t show up, I didn’t get paid. I was unaware there could be long term consequences.

Uveitis that was apparently the only symptom of a virus set in summer of last year. Once it resolved, I started getting really dizzy with generalized headaches much of the time. I’ve had conversations with long-haul Covid patients, who have symptoms quite similar to mine. I now suspect the uveitis may have an otherwise asymptomatic Covid-19 infection.

The lady who came to evaluate me from low vision vocational rehabilitation said she thought I might have chronic fatigue syndrome. I read what I could about it online, and I checked a lot of the boxes as far as symptoms go. If I don’t meet the criteria for an autoimmune diagnosis, I feel I definitely meet the criteria for ME/CFS.

I’ve been trying to get into podcasting since, as evidenced by my lack of consistent posting here, I can’t always see well to read and write on a computer. My phone, with the brightness all the way turned down, is usually alright to look at. On the bad days, it does make me quite dizzy. But it’s the smallest screen I own.

The iPad I have less luck with. Fewer apps even offer dark mode and the screen is a bit too close and too big. Anthing with videos or large pictures is a no-no. TV screens are ok, if the brightness is adjusted to reflect the day’s level of light sensitivity. So I can watch TV and movies, but I’m having a heck of a time writing reviews of them.

The only thing that helps is really pacing or limiting myself. I’m used to knocking out tasks or blog entries all at once. Now I have to do them for small amounts of time. It can be very frustrating to completely adjust your way of doing things. But anything is preferable to crashing so hard you get that thought in your head—“Oh, so this is how it ends?”

I’ve also given up alcohol except for on special occasions. I’m trying to eliminate as much gluten and preservative-laden food as I can from my diet.

I have seen some improvement since I started implementing lifestyle changes for POTS (post orthostatic tachycardia syndrome). My dizziness starts not long after I’m upright. POTS is a type of dysautonomia, which can be a part of post-viral illness. I was told the closest place I can be evaluated for dysautonomia is the University of Utah. But even though four specialists have suggested I go there, I don’t have insurance coverage there.

I keep asking the dry eye specialist if it’s normal for my eyes to burn if I’m exposed to too much light. He assures me that it is. I wish he had a different answer for me. I’ll keep asking, because hope springs eternal.

So if you need me, I’ll be stuck (mostly) inside my house, fanning the flames of whatever inflammation vexes me on any given day.

No Worries? No. Worries.

CW: medical issues, some maybe more graphic than you’d prefer. Medical gaslighting and trauma.

My thumbs have been numb and I’ve been in the midst of making even more appointments for me and my son. I am not listing this time as a gap on my resume if I am ever diagnosed and treated and I can go back to work. I’m listing myself as a “freelance healthcare advocate.” I mean it’s a volunteer position technically. But very rewarding on very few occasions.

Instead of grabbing documentation to justify a very much needed referral, I was trying to distract myself by writing. I had to stop being on Twitter for a bit because I’ve reached peak frustration with the state of my state’s medical system. The main issue is I get a million recommendations and treatments for my symptoms, without receiving a diagnosis for what might be causing the more debilitating and unusual ones.

Vestibular therapist suggested a low histamine diet. Dry eye guy suggested a Whole Foods diet. Primary said cut out dairy and then cut out gluten. If that didn’t work try the FODMAP diet.

Are you all aware that food is expensive? Especially when you have income limitations because (though you are disabled), you are not receiving disability benefits? My kiddo only eats specific foods so I end up purchasing a lot of separate items as it is. I have been trying to figure out how to work very specific and often very expensive diets into my so-called budget.

And I’m trying to do this as much as I can without asking for money. The pandemic has been so merciless with so many folks. And I’m stubborn. I really do want to get better so I can go back to work. A job would be way less stressful than constantly trying to stay on top of symptoms, appointments, and paperwork.

Having a limited income also means though specialists really want me to go to University of Utah, I can’t realistically. I have very little insurance coverage there. I am having a lot of neurological issues and everything is a struggle. Even finding the right lighting conditions to file away medical paperwork on decent days is a challenge.

I’ve looked for health advocates for complex cases in Idaho. The only ones I have found are through my insurance company. I need to call the secondary insurance to see if I have any options at all.

But without being able to track what I’m supposed to do on a computer, things get put off or missed. I’m trying to get better so I can be a better advocate for my son, and I’m good at staying on top of his stuff. Just not my own.

So many people this week have suggested I make so many phone calls. I played “Who’s on First” with my primary physician’s office this week. An urgent care doc here said my lack of referrals was due to too few providers in the area and too many new patients. Reasonable, we have had a population boom. What wasn’t reasonable was for him to add that his “advice is not to present with anything hard to diagnose.”

I don’t have a choice in the matter. I absolutely would not wish my current state of health on my worst enemy. The level of discrimination I’ve had to deal with is ludicrous. I definitely don’t want another specialist. If I had a dollar for every time I had to be at an appointment I didn’t want to be at, I wouldn’t need to appeal my disability decision. I need to see doctors until I am diagnosed and treated. I don’t know why that’s so hard for non-disabled folks and primary providers to understand.

First primary doctor I saw here told me to “Take a chill pill and lie in a dark bath” during the onset of photophobia. I felt validated when the ophthalmologists almost immediately tried to hand me off to a neuro-ophthalmologist. But he didn’t treat photophobia.

Next primary doctor kept saying I seemed anxious. I was anxious. I still couldn’t see. I was twitching and drooling under florescent light. I was supposed to go back to school on a computer. That wasn’t going to happen unless someone fixed my eyes and/or brain. A vocational rehabilitation professional I was working with, who was blind, warned me that psychiatric medications could complicate my dry eye and make me go completely blind.

Yet the only thing my primary was suggesting was psychiatric medication. I kept having to explain that i didn’t want to lose my remaining vision. And besides, I have people for that. They are my medication manager and counselor. And even they backed off on the conversion disorder theory once the dry eye and the uveitis were documented.

The degree and length of the uveitis promoted the dry eye specialist to preauthorize amniotic bandages for my eyes. It didn’t come to that but when your immune system tries to eat your eyeballs yes. Yes it does make you anxious. Is that just because I have an anxiety disorder? Because I feel like that would make anyone anxious.

And the eyes are just the tip of the iceberg on my symptoms. I have documentation and pictures to back my symptoms up. and I am going to the ENT and dry eye specialist again next week. I am hoping to have their written recommendations for next steps on file so my other provider believes me.

So when I tell you I’m sick, it means I’m sick. And when you tell me I’m “fine,” it’s beyond dismissive.

My newest symptom, which I hope goes away, is spatial hearing loss. I wasn’t able to read much on it but it seems like another neurological issue. So my list of brain issues or potential brain issues is as follows: dry eye that isn’t a gland dysfunction, severe photophobia, vestibular issues with generalized headaches, full-on migraines, ocular migraines, brain fog/memory issues, neuropathy, tinnitus, some kind of autonomic dysfunction, and visual static. In addition to the spatial hearing loss which I’ve only experienced three times this week.

There are other issues I’m forgetting because (ha) that’s what I do. Like the difficulties with word finding and spelling. I am 44 years old. I graduated summa cum laude with a BA in performing arts. I often cannot spell the word “milk” on a grocery list. And I don’t know what “chicken sauce” is supposed to be, but I want no part of it. I battle nausea too much as it is.

I have a migraine specialist but the injection he prescribed made my headaches longer and more intense. When these different specialists try to address different symptoms, they often make things worse. And I’m probably going to end up getting called noncompliant at some point but really, I am just practicing self defense.

No worries? No. Worries.

My New “Normal”

My thumbs are numb already but I did want to post a quick PSA. Keep fighting and advocating for yourself if you know something isn’t right with your body. I had to inquire twice about a cyst and now, as it turns out, I need to have the cyst and an organ removed.

Since the specialist can’t confirm that the cyst is not cancerous until he takes it out, I’m going to have them investigate my infamous spleen cyst. The cyst they keep saying is a calcified breast implant even though I’ve never had implants. The one they caught on imaging two years ago, when I started getting really sick. And yet they didn’t even mention it to me. The one that is theorized to be from a spleen hematoma even though I can’t recall having an injury to that area. The one that hurts very intensely off and on with no rhyme or reason.

From what I’ve been able to search, complications from spleen cysts aren’t common. But I’ve had some rare symptoms and diagnoses lately. So when they say something is “normal” I keep in mind that three specialists have said “geneticist” and suggested referrals out of state. I can’t decide whether I’m an odd duck or a rare bird. Why not both?

So I don’t end on a grumpy note, here is my cat thinking really hard about causing some chaos. Happy Sunday, all.

A cat sits on a windowsill staring into a kitchen sink.
Starlight thinking really hard
A cat sits on a windowsill staring into a kitchen sink. There is a large pink orchid in the sink.
No orchids were harmed in the capturing of this image.

To Sleep, Perchance to Dream

I’ve always had a fascination with Morpheus from The Matrix films. So to finally have my bizarre childhood back scarring identified as “Morphea” was oddly fitting.

I knew Morpheus has a basis in mythology and from my search on this lovely dark browser, Wikipedia indicates that he is a “god associated with sleep and dreams.” I am trying to add the link but no guarantees as my thumbs are quite numb today.

As a person with high levels of anxiety, I have been plagued with nightmares since childhood. I have a history of insomnia allegedly stemming from bipolar disorder. Sleep and I are not always friends. I must be unaware of some off-again, on-again relationship I have with Morpheus.

Recurrent nightmares started about the age of 5. My mom and dad had a tapestry of a bullfighter hanging in the trailer hallway. After seeing Disney’s Peter Pan, I became terrified of Captain Hook. In my recurrent nightmare, the bullfighter came out of the tapestry in the form of Captain Hook, and slaughtered everyone at a party hosted by my parents with his hook hand.

If memory serves, we only saw Peter Pan because The Dark Crystal was sold out. Why I can remember these details from 1983 and not what I had for breakfast this morning remains a mystery.

Also in 1983, I saw Twilight Zone: The Movie. Spoiler alert:

there’s a green monster on an airplane wing in the concluding segment. That monster haunted my dreams for months. In my dream, my mother and I went to a hotel room. Everything in the room was very bright and white. There was a bench in the hotel closet, and a hole in the closet ceiling. I was compelled to sit on the bench EVERY TIME. And every time, that green monster popped out from the ceiling hole and grabbed me. And that’s when I woke up, after what my son would call the “jump scare.”

I will detail my experiences with sleep paralysis in a later entry. My eyes are tired and my thumbs are quite miffed at me.

I feel like many of my health problems also started around the age of five. Chicken pox brought on the Morphea. I missed my very first Valentine’s Day party in kindergarten because of the pox. That same year I started showing signs of obsessive-compulsive disorder.

I also had really short but incredibly intense migraines in the back of my head. I remember the first one clearly. I was standing on the little porch on our trailer looking at the red plastic chairs and our plastic table with a Mickey Mouse pattern all over it. The head pain was so sudden and severe that I started screaming. My mother rushed out to see what was wrong. These headaches persisted through high school and were usually a result of exerting myself (such as running on the playground).

Complicating sleep lately are my twisted spine and aching hip. And last night, severe neck pain. Physical therapist has a theory that I need some X-rays for my neck but after all the X-rays I’ve had done this year, I have a paranoid fear that I’ll become radioactive.

Maybe with the help one of the few medications I’m not having a bizarre reaction to, Morpheus and I can mend our relationship tonight.

I didn’t get a diagnosis from the dermatologist today but he thinks my primary doctor needs to send me to University of Utah or The Mayo Clinic. His theory is that they can present me at “grand rounds.” Being featured at these places was not on my bucket list.

But maybe if I get a diagnosis and treatment, I can go back to work. Both regular vocational rehabilitation and low vision vocational rehabilitation recently closed my cases because I am still too symptomatic to work. Without a diagnosis, treatment plan, or prognosis, I can’t work and I also can’t get help to get back to work.

I am currently managing care for myself and my son. I just want to feel better so I can at the very least have an improved quality of life. My goal is to be around a long time so I can help him more. And help my boyfriend more. And help my other family members more. I want to do so much.

Right now, the thought of recovery is a pipe dream. I can’t make it a reality without medical help.

Morpheus, hear my cry.

Sweet Dreams by Eurythmics, 1983

Slow and Unsteady

Hello folks. It’s been so long I don’t know where to begin. Forgive misspellings or misused words. My thumbs have been numb a lot the last two months so even typing on my phone is a challenge.

And the pain in the back of my head is starting. Doesn’t take long, some days. I’m taking care of my child and myself. But my new physical issues are posing obstacles depending on the day.

I may repeat myself. I have brain fog. Because of OCD, I have always been a broken record. But this is different. I don’t obsess, I’m just forgetful. Words are hard. I tried to say my cat Mona Lisa was in the litter box the other day. But it came out as “Mona is eating the laundry.”

My current theory is that aliens have abducted me. Or maybe the military gave me breast implants while I was asleep. I did live on many an Air Force Base. So either/or seems possible.

You see, they did a mammogram and my doc said my boobs looked good. Not those exact words (ha) but you get the drift. Everything was normal. Then the X-ray to confirm scoliosis, which I thought might be relevant, came around. And there is in fact scoliosis and spinal degeneration. More than they thought. I am consulting with a neurosurgeon in July.

The incidental finding was that I had a calcified left breast implant. And I thought, when did I get drunk and get implants? I messaged my doctor saying I think these are my X-rays, but when in the last month did a breast implant magically appear???

Cue the theme to The X-Files.

Before he saw my message, he very kindly offered me a referral to a breast specialist to get that implant looked at. Then he saw my message and apologized (he’s professional that way). He said he just got off the phone with radiology and the mass is not in my breast, but appeared to be a calcified mass in my spleen. They had seen it on prior imaging but since it’s usually from a hematoma (bruise) in the spleen, they usually don’t worry about those things.

But it was found 1-2 years ago, which is about the time my physical health really started to take a turn. So I don’t know if that’s what’s causing issues but I am concerned. I also don’t remember a spleen injury but I do have a history of easy bruising.

My new doctor is kind and helpful and not attributing things like organ damage to my eyes to anxiety and depression. He’s getting me to the right people after over a year of being dismissed and gaslighted by two other doctors. They’re starting to figure things out.

I always wondered why standing up straight didn’t feel right. Mystery solved. At least partially. Still have follow up with cardiologist about bizarre tachycardia. But I do have dangerous curves. It explains a lot.

The other element of this is post viral even if it’s not an identifiable autoimmune disorder. My migraine guy said something about mast cell problems and now the allergist is exploring that in addition to my regular allergies.

And I see a rheumatologist May 16th! The lady in charge of referrals even looked at my summary and said “I think I know what this is.” I would celebrate but I’m too tired. I didn’t realize getting a rheumatology appointment would be my Everest.

Allergy scratch tests were done Monday at 3pm. I’m still reacting to them despite several topical and internal doses of Benadryl. They say that’s not normal. But none of this has been.

Thank you to my son, my Jim, my mom, my grandma, and my sister, who have supported me so well through this bizarre health journey. Thank you social media friends. Thank you to the folks on disability Twitter. Let’s hope they treat at least part of this soon. Any expansion of my current limitations would be great.

And to my kitties—stop attacking my feet. You’re not hungry, Frank, your mouth is lonely and you’re bored. Thanks for giving me the cuddles on my worst days. Thank God you’re not on my list of prolonged allergens. Those aren’t real doggies, Mona, they are TV doggies. I know you’re hungry, Star, but stop climbing the curtains. You are not Hobbits. Second breakfast isn’t served here.

A black and white cat and a grey tabby cat lay on a blanket and a pillow in the corner of a couch.
Mona Lisa and Starlight. Ladies of leisure
A large orange and white cat sits on a drying machine. He looks irritated.
Frank the Tank

French Fried Eyeballs

Hi there.

I have elaborate plans for blog entries. But getting one done takes weeks. I can look at the computer in short bursts. Sometimes it makes me dizzy. Working on establishing an underlying cause for the vertigo. It is very frustrating.

My eyes developed a sensitivity to the special lubricant eye drops, I think. Dry eye guy saw inflammation on the outside and eyelids (as opposed to the inside) which is good. Discontinued those drops. Finding that some others also irritate my eyes. They are preservative-free. So. Am I allergic to the water in them??? Maybe I am becoming a vampire. Made a list comparing ingredients.

Started Restasis. Trying to reinvent myself and work off the computer, somehow. Fluorescent lights are still awful. Wish me luck.

The Eyes Have It

I know it’s inappropriate to refer to mentally ill folks as “crazy.”

That being said? News flash to my doctor: I know that I’m crazy.

But just because I have a history of mental illness, it does not mean that you can just dismiss my documented physical symptoms and insist that I “just need psychiatric medication.”

Psychiatric medication makes my eyes more painful, because they dry them out. This has been explained to you.

Also, if a “normal” person presented with these symptoms, would they be treated the same way? I sure hope not. I feel that I am being discriminated against because of my mental illness. I have been suffering physically for months. This is unacceptable.

When I first developed photophobia, and what was later diagnosed by the ophthalmologist as dry eye disease, my primary doctor noticed that I seemed quite anxious. She suggested that I needed psychiatric medication. The funny thing was, I had been taken off all of my psych meds because of the eye problem. And psychiatric meds would have made things worse.

The even funnier thing was, I was anxious because I COULDN’T SEE. I think that would make most people anxious. And my condition seemed to be deteriorating.

Since then, I have been diagnosed with uveitis. The underlying cause is undetermined. I had a lot of blood tests. They don’t show markers for inflammation, yet. But my eyes will not calm down. The burning abated when I was on topical steroid drops four times a day. Now the burning is back with a vengeance. I am on other prescription eye drops to help “calm my immune system down.”

I have been complaining of episodes of extreme fatigue since I was diagnosed with shingles. That was sixteen months ago. I remember being fatigued even before that, but I assumed it was stress. The fatigue is a bone tired exhaustion. It’s unlike anything I’ve ever felt before. Now I’m so fatigued that I can’t function well on a day-to-day basis. Added to that, I am having dizzy spells where I don’t feel comfortable even driving five minutes to the local grocery store.

I have been depressed many times. I have never been this physically ill.

I know that my blood tests don’t show inflammation yet. The fact of the matter is, my eyes have been inflamed for months now. The eye doctor still thinks it’s an immune system issue. So some sort of treatment would be helpful. I’m dumping prescription eye drops and $40 worth of OTC eye drops into my eyes per week just to keep the pain at bay. This would indicate that there is something physically wrong.

I haven’t been able to work in months. Because of my eyes being the way they are, normal lighting conditions are painful. Even applying for jobs has proved frustrating. There is fluorescent lighting everywhere, and “turn off all the lights in the company/store” would likely not be considered a reasonable accommodation.

I tried applying for an at-home transcription job. Even with the brightness turned down, I could not read the instructions. I have since discovered a dark browser, which has been helpful.

But the truth is, I am running out of money and I don’t know what to do.

My doctor doesn’t seem to care. At least not enough to try something. Do I want steroids during a pandemic? Nope. Am I willing to try anything at this point if it would help me feel better? Yup. Do I want an autoimmune condition? Absolutely not. Do I need help, physically? Yes. Yes, I do.

Instead, I get scoffed at and treated like I’m unbalanced and utterly unintelligent. It’s infuriating.

I wrote to my medication manager, who I saw six days ago. She seemed to think I need some sort of physical treatment at this point. If the med manager and my counselor don’t think it’s all in my head, and they acknowledge that I have physical symptoms, why won’t the doctor take me seriously?

I insisted on the phone call to my primary doctor that I was stable. But I admit that talking about the way I feel physically, I was almost crying. I am upset at being exhausted and in pain. I have every right to be. It does NOT mean I am unbalanced or delusional.

They can’t see inflammation in my blood. But the eyes have it.