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Brain School, 2023

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Having subjective symptoms is very isolating because there is no way for others to witness what you're going through. They just have to trust you and you have to trust them to believe you. I know everyone in my life believes it, but they don't get it. I expressed to my therapist that I feel that all of these symptoms begin rattling around in my head and it creates a barrier between me and others.

My world: hurting, trying not to show it, coping with pain, fearful, etc

Their world: normal, uneventful, happy evening

It's very difficult to have something happening to you that nobody else can see.

#disability #disabled #hearing impaired #chronic illness #meniere's disease #hard of hearing #chronically ill #invisible illness #chronic migraine #chronic disability #chronic pain #illness tw #illness mention #spoonie

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Wasn't a virus ~ 4-3-2024

Okay, so... I got a ~flare~

I didn't know this shit could flare. I figured the nerve pain had stagnated, apparently not. Honestly it's kindof scary, I'm trying to cope with the fear while waiting for the neurologist. I'm having a hard time. I cry almost every night. I'm really tired of dealing with this, I just want to be well. I'm okay-ish. I'm doing things I enjoy, spending time with my loved ones, etc. But at night it still hurts and that's really difficult. I'm very impatient to see the neurologist because I just want them to tell me I'm okay.

Four weeks ago when this started I had about a week of intense nerve pain and vomiting + other unsavory GI issues. Lack of appetite, malaise, brain fog, twitching, etc. It stagnated at a manageable mild-moderate discomfort via twitching and tingling. Then three days ago it ramped up again and last night I had an intense attack that echoed the first flare.

There was certainly some improvement from the first time though. The first time the burning sensation was nearly constant for 2-3 days with multiple bouts of vomiting. Last night after the peak of the flare it was manageable and I was able to get to sleep at the reasonable time. For reference, the first flare I was up until 6am.

I'm feeling worn out and poorly today with some unpleasant sensations in my face but otherwise it's still more manageable than the first flare. Hopefully this means the severity will keep decreasing until it goes away? It sounds weird but I'm a bit hopeful since this time is much easier than the first.

Me and my PCP suspect I have gadolinium deposition disease. The issues began within a week I received an MRI with contrast and my symptoms match it near perfectly. It's not an "official" disease, whatever that means, but if the shoe fits! I'm fighting to get a 24hr urine test so we can know for sure. I think it's kind of ridiculous that it's so difficult to get a test for a substance 15 million Americans receive every year.

My last therapy session is next Tuesday too, so I'll need to start looking for a long-term counselor soon. Another doctor to search for lol. Honestly the appointments make me feel better, like I have a witness and it gives me something to do. A goal. I miss having goals that weren't centered around my health.

I really appreciated my last therapy session, she helped me do mental exercises working through the death of my dog. She also helped me find some coping mechanisms to deal with the fear of having an undiagnosed illness. Her recommendation was to write down my symptoms, especially when they're making me feel isolated.

I'm feeling a lot of guilt about the stress this is putting on my parents. I was crying last night being held by my mom and said, "I'm so sorry, I never wanted to put you through this again."

She replied, "You're not putting me through anything. We're going through this together."

That made me feel a lot better. You can never completely silence the negative thoughts but that certainly lowered the volume. I love my mom.

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"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." - Matthew 6:34

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#disability #disabled #chronic illness #hearing impaired #hard of hearing #chronically ill #invisible illness #illness mention #illness tw #medical tw #blog #undiagnosed #invisible disability #chronic disability #chronic migraine #chronic pain #christianity #faith #spoonie #spoonie life #nerve pain

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Eurasian Treecreeper (Certhia familiaris), family Certhiidae, order Passeriformes, Czeck Republic

photograph by Martin Mecnarowski 

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Aquatic Kermit

Alligator Gar (Atractosteus spatula), family Lepisosteidae, order Lepisosteiformes, found in fresh and brackish water in or near the Mississippi River, and along the Gulf Coast of the U.S.

This large predatory fish can grow up to 8.5 ft. long.

photograph by Solomon David

#gar #lepisosteidae #atractosteus #fish #icthyology #animals #nature #jenna marbles #kermit

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Spanish Ribbed Newts (Pleurodeles waltl), family Salamandridae, found on the Iberian Peninsula and coastal NW Africa

photograph by Peter Halasz

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Every time I end my therapy sessions we feel so positive and hopeful with our little goals for the week and then I come in on Monday like,

"Yes, I have been journaling very well. Unfortunately The Horrors have gotten worse."

#disability #disabled #hearing impaired #chronic illness #chronically ill #chronic migraine #chronic disability #chronic pain #invisible illness #illness mention #illness tw #mental health #therapy #blurb #funny #invisible disability #spoonie

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My insurance just informed me I owe a total of $4,000 for a six hour ER visit. I guess next time I have an emergency I'll just die.

#fuck capitalism #fuck american healthcare #disability #disabled #chronic illness #chronically ill #hard of hearing #chronic migraine #chronic disability #chronic pain #invisible illness #illness mention #emergency tw #medical tw #medical bill tw #healthcare costs #invisible disability #disability rights

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#whyyy #looks so pretty on my laptop than I open my phone and it’s goof city #blog #blogging #funny #shitpost #meme

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Oh to be a little fuzzy bee in the soft ground

Ground-nesting bee time! (Well, all the warm months are, but I see them mostly first thing in the spring before everything grows in.)

Unequal Cellophane Bee female in her nest (Colletes inaequalis)

March 13, 2024

Southeastern Pennsylvania

#cute #reblog

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Day by day ~ 3-29-2024

Since my last blog I saw my optometrist and my eyes have gotten a clean bill of health! Nothing "wrong" with my eyes except some surface dryness.

I still haven't received a call from any neurologist and my bloodwork is delayed because the lab technician is on vacation. I'm pretty antsy for answers, obviously, because this shit has really been difficult. If I can at least find out why, even if it's not "cured", I won't be so scared. It's scary not knowing. I asked my PCP to test my urine for gadolinium because the sensory symptoms onset two days after my MRI in February and I found some reports of people with near-identical symptoms after being administered MRI contrast. PCP seemed skeptical, but I haven't had any other obvious solutions presented to me.

I feel like a conspiracy nut a lot. Is it this? What about that? Should I get this test? I'm desperate for answers. I accessed my own MRI to check for Chiari Malformation (didn't have it). My family is telling me to step away from searching but how can I? I feel awful and I'm expected to wait patiently for months to see doctors that don't help. Who's supposed to be looking for answers when doctors won't?

Doctors act like patients, especially women, are trying to scam them into diagnosis's, like we want to be ill. I don't want this to be happening. ~shocker~ I wish I felt "normal", whatever that means. If I had one wish, I'd wish for health. I'm tired. Tired of waking up everyday to a life of discomfort, to headaches, to feeling restless, to pain, to uncertainty.

I know I sound depressed, I guess I kindof am. I started this year with tinnitus, and I'm heading into April with a laundry list of physical challenges and no answers.

I don't think anyone that hasn't had these symptoms understand the mental toll it takes when your body is never at rest. Always twitching, burning, stinging, buzzing, cramping, aching, ringing--I haven't felt truly relaxed since Christmas 2023. I can't even sit on my phone and scroll mindlessly because my own eyes turn everything into a lightshow.

I'm not normally someone who likes to pity party, but get the balloons because that's how I feel today. I'm sure I'll perk up, do an activity, watch something, and I'll feel a bit better by tonight. But then the high will fade and I'll crawl into bed and begin shaking and hurting all over. I'll wake up and do it again tomorrow. And the next day. And the next day. I'll keep going, even if it's miserably.

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 "We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body." 2 Corinthians 4:8-10

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#disability #disabled #hearing impaired #meniere's disease #chronic illness #hard of hearing #chronically ill #chronic migraine #chronic disability #chronic pain #invisible illness #illness tw #illness mention #vestibular disfunction #vestibular disorder #vestibular migraine #nerve pain #nerve damage #migraine #spoonie #low spoons #vent #tw vent #vent blog #blog #personal vent #christianity #christian faith #faith

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Bear pancake revamp

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old assignment for school . prompt was "best friends"

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strawberries | raspberries | currants | cherries

— by Virginia Granberry (1831-1921)

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"this too shall pass" well can it fucking get on with it

#please #aint shit funny about how long this is taking to pass #spoonie

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Having an illness is feeling like nothing is going right in life and you live in hell until a doctor actually takes you seriously.

I've been so depressed and hopeless lately but my PCP actually took me seriously today and is committed to my health. Totally turned my mental state around. I wish all doctor's appreciated how much influence they have over their patient's mental wellbeing. It's not like anything miraculously changed during that appointment, I'm not cured or feeling better. But just knowing that someone actually wants to help made such a world of difference.

#disability #disabled #hearing impaired #meniere's disease #chronic illness #hard of hearing #chronically ill #vestibular disfunction #vestibular disorder #vestibular migraine #invisible illness #invisible disability #health #tw medical #medical gaslighting #chronic migraine #migraine