lithium-lossr

[lithium-lossr]

On day 2 of getting back on my meds and I’m so tired. I forgot how sleepy Risperidone makes me. I’ve been wicked light headed and have felt rather crappy but the more I remember how it was getting on heavier meds the more I remember this too shall pass.

I’ve been trying to drink more water and pedialyte but my mind is just fog. Matches the weather we are having honestly. I keep waking up to go to the bathroom at night and when I pass the window the hills are just gone. Engulfed into the stomachs of the clouds. I can see some of the dooryard but barely past the hill. That’s my attention span right now 😪

[lithium-lossr]

Daily

Water (1 gallon challenge everyday 🙏)

Pedialyte

Prenatal (for extra vitamin boost)

Salty snacks & meals

Zoloft

Lithium

Risperidone

Multi Vitamin

No caffeine.

Stand up slow.

Rest.

No soda, besides the occasional Canada Dry.

[lithium-lossr]

I have a heating pad and a weighted blanket coming in the mail, I’m so excited. I sleep with 5 blankets every single night and then a pillow on top of my chest with the pressure weighting on me.

Puts me right to sleep.

Issue is, every night I get up a million times to pee so my blankets get all messed up. Fingers crossed I can cut back to maybe two or three blankets, including the weighted.

I’m also super excited to have a heating pad on the way. My partner and I will be fighting over it for our sciatica 😂 I had to layer some bio freeze on but it don’t do anything. I think I have some tiger balm, I should try that. I just remember. Journaling can be beneficial I guess.

[lithium-lossr]

Got meds today 🙏

• 75mg of Zoloft

• 600mg Lithium Carbonate

• 0.5-1mg of Risperidone

All night intake

My Zoloft is in two prescriptions of 50mg and 25mg. I didn’t realize she did that until my bottle of 50s went down faster than they should. With my next appointment in may I just assumed I’d take it up with her then but thankfully I was able to get a hold of her via online health portal. We discussed getting my BP2 meds in when I brought up the Zoloft the prescription just hadn’t sent. Simple as that.

When I originally took my Lithium it was in capsules and now it’s tablets. I’m not sure if there’s any difference. I assume capsules are faster release and I hope the tremors are less with these if they’re slower release but it’s lithium so I assume there’s no missing them. I googled the difference but couldn’t find what I was looking for, or could understand. It’s been getting increasingly difficult to focus and function the longer I have gone without my meds in such a stressful environment. Hopefully this helps get me on track.

When I took Risperidone preciously it was flat 0.5mg daily, but my doctor suggest 0.5mg - 1mg as needed. I plan on starting the week with 1mg as I’ve been rather agitated for really no reason and my mood fluctuations are becoming more difficult to control. I’ve broken boundaries and mental health isn’t an excuse ever. I just haven’t gotten myself to a place when I can control myself in curtain situations. I need to practice more.

[lithium-lossr]

Finally after over two years I will be getting back on my Lithium & Risperidone 🙏 I can’t wait to start feeling normal again!

[lithium-lossr]

Tiktok is wild lmao

#hyperfixation is trending & it’s just filled with just, hobbies.

there isn’t anything wrong with hobbies!

But a hobby isn’t going to be the first thing you think of every time you open your eyes- even for a split second at night.

Typically you don’t spend every waking moment thinking, researching or compelled to do or research a hobby.

Typically hobbies don’t hinder relationships. You aren’t bursting at the brim to info dump or help someone with something you’re basically an dismissed expert at it. Typically a hobby isn’t criticized so bad because it’s not so obsessive.

I’m not trying to gatekeep a hashtag but after a lifetime of expressing my dire love for my hyperfixations and either being told it’s too weird, they don’t care, or ignoring me all together to talk about something else in response…. idk. Just kinda sucks to see. It’s the new “fun” medical term to throw around to be “cute”

Meanwhile I get called “school shooter” because I have always had an insane love for psychology and true crime. Plants helped it for a while until I started deeper research and started hyperfixating on composting. Now it’s weird again. Or that I love fungi. And not just mushrooms (even tho I do love them) but like mold.

These are are just some of the things I’ve dived so deep into that while I get up to pee at midnight I will think of their composition, terminology, patterns, sounds, ect ect until I go back to bed and wake up to do it all over.

It can be quite honestly debilitating at times. When I hyper focus on my hyperfixations I can lose hours. I can get mad at my surroundings for bothering me because I haven’t realized it’s been a few hours.

This goes for terms like manic, psychotic, suicidal etc, etc. Using these terms takes away from people actually suffering with these symptoms.

[lithium-lossr]

It’s so exhausting to think you have a support system bc they support you on the easy problems but as soon as you need help with some of your harder problems all of a sudden you’re “too much” and everyone can handle the same problem so “why can’t you??”

The people who are “always there for you!!” But when you need them it’s inconvenient every. single. time.

And when it results in masking until a meltdown YOU’RE in the wrong for not communicating somehow??? When you did so many times it lead you to this exact point?

Stop pretending like you care unless you actually care. And listen. And research yourself instead of just “acknowledging” the diagnosis.

[lithium-lossr]

I ate a cookie for lunch today.

I know. that’s not real food.

But they’re my favorite kind of cookies, strawberry shortcake. I never let myself have a treat until I’ve eaten REAL food. But I had no energy to go through all that. So I ate it.

I ate it because I knew I should eat. Because eating something is better than nothing.

My body needs the energy especially since it’s burning so much doing absolutely nothing.

Yesterday I didn’t eat until 630pm. And I felt like an absolute mess. I was dizzy and irritable. I had finally mustered enough energy to take care of myself and nothing was easily accessible which just made it so much worse trying to just make nuggets and fries.

This morning I saw the cookie. Day three of sitting on my shelf in its little bag, waiting for me to finally snack on it. And I just thought to myself, “why don’t I just eat them? Why do I force myself to wait until I basically forget about them because I’m incapacitated from eating a meal?”

Part of it's not remembering I need to eat since I'm not ever hungry, but a part of it is just blatant nonsense of not allowing myself to having something I love because the timing isn't right?

So I ate the cookie. It was getting stale, but still it was just as sweet & delicious. A nice glass of oat milk washed it down and that was it.

If you haven’t eaten today, eat something. Even if it’s just a cookie. Your body deserves the fuel to power itself, no matter how able you are.

And drink some damn water.

[lithium-lossr]

It’s been a while since I’ve posted but mostly because after the appointments I was exhausted for days on end and all energy accumulated was spent on my toddler. Finally though, after a long nap, I have mustered enough energy weeks later to update my little tag for myself before I forget anything.

So here’s an update for myself.

Last I posted was how anxious and frustrated I was with the American healthcare System since, without insurance, 15 years of my life was depending on 30 minutes.

When I went in for that appointment I ended up only having an EKG, not the orthostatic blood pressure I expected. Which is fine, just really shitty when travel time is north of three hours, but my doctor knew their EKG prices are FAR cheaper than my areas so no worries. This appointment was 12/31/19

The nurse on the other hand was rather condescending, I thought. Maybe it’s the autism not catching tones right but i dunno. Felt off. I expressed I knew the EKG procedure since I’ve had several in the past so she didn’t need to walk me through it. She broke terms down for me and I also explained she had no need since I have a strong history in human anatomy but also have had several friends & my own sister being nurses. TYPICALLY I have nurses feel relieved or kinda happy after explaining I don’t need them to baby step me. Normally allowing that knowledge be known opens to some great convos that don’t involved every single step they’re taking. I felt some of her finishing comments about me being a “good little ekg taker since I’ve had so many” basically felt invalidating. I’m sorry I didn’t have you explain the whole process out to me like I’m a newbie. That you didn’t have to remind me 100 times to stop moving or talking. Maybe THATS why you fucked up the wire order and put my calves on my arms & messed up the chest one with another. Because you didn’t talk yourself through it. But hey, who knows. I don’t.

Anyways,

My EKG came back and it showed enough for us to set up and orthostatic bp appointment.

I was unable to find the EKG Results on the portal but I’ve requested them and will be adding them to my tag to keep track of all this.

For my orthostatic bp appointment I thankfully had a much nicer nurse. She had me lay down and did me up with a cuff and finger pulse oximeter. My oxygen was 99% (not to brag or anything *debbie Ryan hair pushback meme* but it’s Rona SZN bb)

I just focused straight up & ahead. Throughout the whole lay, sit, stand transition she asked me questions on how I felt. Just like any day my symptoms were strong and immediately on sitting up my chest felt sharp and tight. Slightly light on my top half. More I had to support myself the worse I felt. Started to realize how much I support myself with walls, chairs, bars, anything to keep me from having to hold my own weight because this sucked. When I stood my heart kept hurting and my body felt light. My legs felt like they were literally draining. Like I honestly feel like I’m in some sort of Stephen King movie with how it felt the blood fall. Feet felt heavy.

The poor nurse sounded so concerned. Several times she asked if I was going to pass out and if I needed to sit then sit but I won’t lie. If it took me passing out I was prepared to because I’m SO TIRED of this debilitating BULLSHIT.

To give better context on results I’m about to drop (to anyone who actually might be reading this and care) on my orthostatic bp I am:

-24 years

-114 lbs (51.7kg)

- 5’7” (170cm)

My results (copy and pasted from the portal)

Orthostatic BP -

123 / 78 supine R arm adult cmchale1 01-12-2021

127 / 95 sitting R arm adult Abnormal cmchale1 01-12-2021

134 / 91 standing R arm adult Abnormal cmchale1 01-12-2021

Conclusion came to yes, it is POTS-

“Dr. R______ has reviewed your nurse visit and states: Her symptoms and vital signs are highly suggestive of POTS, or postural tachycardia syndrome. There are a variety of reasons this can happen, but the most common demographic is young, thin females. Often, nonpharmacologic treatments can be very effective. Specifically, high salt diet, aggressive fluids, and a daily exercise program with cardiovascular training (e.g. interval jogging - let me know if she needs more specifics). Also, doing things to increase venous return (squeezing the leg muscles a couple times) before standing up can be helpful. Sometimes, a beta-blocker like propranolol can be used as needed to help with high heart rates, but should only be used in the context of the behavioral strategies. I'm happy to send some in, if she doesn't get enough relief with the behavioral approaches! Let us know if you have further questions.”

Since dealing with this so long most of these things have already been in place. I’m a r/hydrohomie and even recently updated my bottle to a half gallon hydroJug since my quart was just useless. Always ALWAYS empty. I have a relatively salty diet but will be getting supplements to boost, I just don’t really know what to look at for SALT/sodium tablets. Like, the thought of them existing never crossed my mind until I read about sodium intake. As for working out I won’t lie, I chase a toddler (16m) around all day so I definitely TRY to get a nice workout in but I’m exhausted after them. In Maine we are below freezing temperatures and inside just don’t have much room so I try to hoop or do some palates or something to get my muscles working. I used to be such an avid walker when I lived in town. Even in the winter I’d just walk to the store. But now the closest store is 5 miles away on a busy road in tourist/farm land so needless today it’s isolating for someone who doesn’t drive. Even when the weather is nice I never NEVER HAD TO DEAL WITH T I C K S. Northern Maine doesn’t deal with that. I saw my first tick at 19 years old 50 miles from my hometown. So not even something I had to worry about hiking in the woods up north. But HERE. PEOPLE KEEP A COLLECTION TO SEE HOW MANY THE CATCH EXCUSE ME.

Ugh that’s a tangent and a half but 🤢🤮 ticks

Little fucking paracites.

As for the medication, I’m glad that wasn’t the first thing she pushed on me. I LOVE having a D.O. over an M.D. Idc. If I have a choice I will pick a D.O. EVEYTIME. My goal is to eventually be off all pharms, even if right now it’s only Zoloft. After I stop breastfeeding I’m to add lithium back at a low dose and that’s just so much maintenance. Labs, med management, MORE refills. Adjustments. Sigh.

Adding also for anyone who does actuall read. I KNOW a cardiologist is who can properly diagnose me and help me more effectively than a D.O PCP. My pcp is literally just worried about my heart and that it was ignored so long. She also knows I have no private insurance and her office doesn’t take state. She’s worked with me in the most amazing ways to get me the best care for the CHEAPEST.

Her original plan was to have a holter monitor for 24hrs & ekg and go from there. I wasn’t able to get a holter to rent so unfortunately we had to relay on my Fitbit but I also got an finger pulse oximeter to track my symptoms especially when I felt them. I was suggest to also get a BP cuff but baby steps. I plan on ordering an electric arm bp when I can.

I had my EKG which clearly showed a need for a Ortho BP.

My overall plan was at LEAST get it addressed and in my records for when I eventually DO have to change PCPs for what ever insurance I can scramble up. That way my new pcp can see and maybe I can get in with a real cardiologist.

I’m just so damn grateful that my doctor listen to me. I love receptive doctors. Thank you Dr. R for being a Queen and not ignoring how I have to live and feel based on the words “I pass out randomly.” You gave your thoughts, I CHALLENGED them and you listened. Thank you. Thank you for not having a fragile ego and working on this together.

[lithium-lossr]

The other day I had an appointment to have my blood taken.

As is I’m incredibly introverted but with the pandemic and our family quarantining to stay safe I’ve developed some rather stressful Agoraphobia.

Well, while going through the process of what is no todays norm of questioning, dealing with all the people, white bright walls and lights. Loud patients waiting etc. I had to walk down this excessively long hall to the lab. Immediately I started humming and shortly after I noticed I tried to suppress it out of shame but in just a matter of milliseconds I went from

calm

Ashamed

Angry

Upset

Calm

All while walking and humming.

Seems like nothing but this is a huge step at identifying my feelings and working past my internalized ableism and I’m proud. I let myself use a healthy coping mechanism while in an incredibly stressful situation. I didn’t cry. I didn’t have an anxiety attack. I didn’t go non-verbal so I couldn’t communicate with the staff. I made it though.

Appt date: 12/29/2020

Reflected on: ½/2021

[lithium-lossr]

You know what grinds my gears? The American healthcare system.

Since I was 10 (I’m 25 in March) I’ve suffered, from what now I’ve deducted to be PoTS attacks.

At 10, after my first fainting spell my pedestrian told me it was “hormones” and dismissed it. A nurse told me it was a vasovagal syncope as a teen after several spells. Several nurses did postural orthostatic vitals on me for two weeks by doctor's orders, acknowledge the problem but didn’t address it. My own cardiac nurse sister just told me to “drink more water.” And an OBGYN dismissed it for pregnancy hormones for the one time I passed out in my history of fainting.

And I mean I’ve passed out standing:

doing the dishes

in line to pay for my food at subway

in line waiting for my meds when I was impatient

in line waiting to cash out groceries while pregnant

while talking to a coworker

And those are just the rememberable ones.

I’ve almost passed out countless other times, but thanks to listening to my body because medical professionals have decided to dismiss my pleas for help I’ve learned that keeping my legs moving for circulation helps keep it at bay. So I bounce, walk, jump, jog in place- but lightly because too much makes me winded leading to me having to stand still & well, yeah.

And not every time, but I’d say just about 75% of the time when I stand the past few years I lose my vision. I feel my blood drain and I loose my balance. I’ve learned to brace myself for a fall and bend my knees just in case and when bad enough to just guide myself to the ground.

I have to keep a canteen on me at all times and always have to make sure it’s full because I always need a drink since I’m absolutely dehydrated every 45 or so minutes. So I sip every 10 (or as soon as I’m slightly thirsty which is about that time frame. Canteens with straws, FTW) but if I cannot get water in me I WILL PASS OUT If I’m standing. More than not if I am in this situation I will just sit down/lay down. I no longer have pride & I’m just in survival mode so I don’t fall over and have an ambulance I cannot afford show up.

But with drinking comes peeing & it’s like the water goes straight to my bladder because just about instantly after I feel I have to pee so bad I’ve become very accustomed to just going outside to pee behind the house. It’s so bad I can literally go pee before bed and have to instantly get back up to go again with literally another full bladders worth of pee. Then not drink at all, all night, and wake up every two-three hours and have to pee, again and again.

And then on top of that, very night I sweat so badly I have to change clothes at least three times, flip my blankets at least once and typically have to move to a completely different spot on my bed or cover where I’m laying with something dry.

I’m exhausted as soon as my eyes open and hold no energy to harness my motivation. My brain is a constant haze.

My chest hurts.

I have chronic digestive & gastrointestinal issues. Nausea. Diarrhea. Indigestion... I sound like a pepto commercial, ffs.

I’ve had to give up so many things I love because I’m now so intolerant.

But that’s not why I’m fucking pissed about America’s “Healthcare” System

I’m pissed because FINALLY by chance I’ve gotten a doctor to listen to me after disagreeing with her diagnosis & showing her what I have for symptoms, what my Fitbit has shown, along with my research. But of course it can’t just be simple as her doing her thing, me following what ever she needs and bada-bing bada-boom we know what’s going on.

Because I’m not rich enough for private insurance I cannot afford or get the heart monitor she needs me to wear for at least 24 hours for an accurate diagnosis

& state (free) insurance? Well if I get state insurance I can’t go to this doctor anymore because they do not accept it at their office.

So tomorrow I have to make a ~3 hour round trip for a 30 minute ekg appointment and hope and pray that during that half an hour I show symptoms.

I literally have 15 years depending on 30 minutes tomorrow

And after, even if I don’t get any help

I still have to pay.

Appt date: 12/31/2020

Rant date: 12/30/2020