#health struggles

[draftmare]

It has been a really rough four-five days. Head pain has been out of control, chest pain has also been out of control. Today was the first day that I woke up without chest pain, which was a huge relief. Yesterday I was curled into the fetal position on my bed by 1:30 pm just begging my chest to stop hurting it was so bad. I have been barely surviving on 4 hours a sleep per night for the last several nights. I’ve talked to my neurologist office multiple times. The first medication they gave me to try made me feel worse. They gave me a second medication to try, and honestly, I am scared to try it. The chest pain is finally gone, and I don’t want it to come back, but the head pain isn’t gone yet.

One of the steps I am going to take is trying to quit caffeine. Caffeine seems to help my head, but seems to trigger other side effects like my face going numb and I think might be a trigger of the chest pain, I don’t know. It’s the only hopeful thing I have right now to not spiral back to what happened over the last few days. I know that caffeine can give people anxiety attack like symptoms, and these symptoms are why I was put on an anxiety medication, despite most of my anxiety going away once I was no longer in an abusive relationship. Funny how that works. I have always used caffeine to self medicate for my migraines, and yes I had several highly caffeinated beverages during this most recent horrible episode. I don’t mind giving up soda, but I do love coffee, and peach Peace Tea is one my favorite road trip drinks. It has more caffeine in it than a can of Coke.

Anyway, so far today no chest pain, knock on wood. Between my shoulders and and across my chest the muscles are really sore, I am guessing from just clinching so hard? Hopefully that will dissipate over the next few days. 

[beaujagr]

venting about health stuff

this is long but I have barely been able to talk about how bad this is for me right now and I feel horrified all the time about how challenging and scary and confusing it all is. I need people to understand, even if it's just one or two people. I don't know what to do to deal with this and therapy is only doing so much, medication only does so much. I am in an existential terror because I don't have answers and I don't even know if I have the time to find them. I'm sorry I'm like this.

content warning: physical health, mental health, delayed & unreliable healthcare, confusing/scary symptoms, brief mention of breast dysphoria, brief mention of alcoholism, harm reduction, unplanned breast size change

I cannot find anything anywhere that says there can be a cause for lymph nodes swelling after having alcohol aside from Very Scary things and I am really just not feeling cool about having to wait literally fucking months to see a rheumatologist to address the repeated swollen lymph node issues while I'm ALSO trying to figure out why I have more lesions or something similar in my brain (next followup Monday). argh argh

how do I not freak out about this shit? I have spent the last SEVERAL years with multiple terrifying health crises, from the head injury & subsequent two years of PT, the pandemic itself & having COVID (with weird lymph side effects), effective malpractice that caused medication to almost kill me in 2020, the blood pressure/heart irregularities from August to last month, and now this shit. I am so fucking scared. :(

I keep having meltdowns because of ambiguity over tiny things (plans for the evening, scheduling, etc.) because I feel like I am in a quagmire of ambiguity, within the US healthcare system that is totally not dedicated to my care - I have some decent doctors, but it's a fucking mess financially, structurally, systemically - and about what the fuck is going on with my body and brain. I am struggling bad.

I want to do fun things! Enjoy my life! I'm 35 and I'm sitting here trying to figure out how I'm going to fill out an advance care directive because every time I've been supposed to do one I have fucking panics and can't do it because I don't want to have to yet again encounter whether I get to live or die as a daily fucking concern. It's hard enough being trans & disabled in the US, I don't know how much more I can take.

I've reached the point of pretty notable depression, my insomnia is probs the worst it's ever been (it's hard to get more than a few hours of sleep even with sleeping medicine or melatonin or any other method of getting better sleep I've tried), & the state I'm in is affecting every part of my life in a devastating way at this point. Even with insurance, I don't even know if we can afford treatment if I end up needing it.

I'm trying to survive all of this but it's so hard to live when I feel like every day is a wild card of whether it's going to be lifelong deteriorating illness, too rapid a death, or *spins wheel* unexplained symptoms & suffering for the foreseeable future? Every bitcosts money, & makes it less likely I'll ever be able to live somewhere safe & healthy for me with my partners.

So if I'm... not fun? not happy? This is why.

I'm sharing all this because I'm scared and hurting and I don't know if or when I'll have answers or what those answers will be. I don't think people understand why I am struggling so much & so messed up all the time. I feel like Shroedinger's cat. I'm dying but not dying but no one knows which or what they'll find when they open the box, least of all me, & I feel like I'm invisible while I'm experiencing it. I'm sorry.:( p.s. I really don't drink much - harm reduction has worked for me, I'm pretty careful, and I haven't been drunk since December 2015. For holidays & the occasional dinner or shower/bath time I'll have like, a drink or two? Today I had a single rum & coke, with John's approval on the rum measurement, and my arm has a swollen lymph node, I hurt everywhere, & my boobs are so swollen my bra barely fits. I like my boobs *at normal size*, but this sucks.

[praiseinchains]

SO SORRY!

I've been MIA for what feels like forever, but let me tell you why.

I take morning medication for my thyroid and my heart. My bed is positioned RIGHT next to my desk, that way I can just sit up, pop open my medicine container, chug down some water, and then go back to sleep for the hour until I'm able to eat. Unfortunately, things didn't go as planned one morning. I'd gotten out of bed and taken my medicine and then, out of the blue, my hand just loses its grip on my glass of water. This has never happened to me before (it was a result of my NMO - I've been feeling pretty weak lately, especially my legs). I wasn't all that tired, I wasn't readjusting the glass, I hadn't bumped into anything... I wasn't moving at all! My grip just loosened and I hadn't even realized it down it until everything was wet - INCLUDING MY LAPTOP!

I immediately shut my laptop off, ran to the bathroom to grab a towel and dried off the keyboard (which is where all the water went), dried the laptop off with my hair dryer, took out the battery, and then kept my laptop upside down for a full 24 hours. I was petrified the next day when turning it on. My parents and the computer repair guy we'd spoken to were all encouraged it would be fine since I took such quick action, but I was absolutely terrified it was going to be ruined. It took me 7 times to turn on my laptop. Once I plugged it in it booted up, then shut down again, then I was finally able to get it to stay on. All my files were still good. My keyboard on the other hand was another matter, which makes sense since it got most of the water. The keyboard worked, but none of the keys were what they should be, so there was no way for me to type unless I did it with the on-screen keyboard and I didn't want to pick through each key separately, so I just made a plan to take the laptop in and get the keyboard repaired.

Before I did that, I wanted to get an external hard drive just in case something happened when the repairman was working on it. I'd had another repairman completely DESTROY my hard drive when he was supposed to be taking it out for me so I could use it on another laptop, so I wasn't going to take any chances this time. We went to Walmart a few days later and got it and just as I was plugging it in to transfer everything, I automatically tried to rename it (I like to do that with my drives) before I remembered my keyboard wasn't working. Except it was. I opened up Microsoft Word and was amazed to find that my keyboard had fixed itself. I guess it just needed more time to dry. Since it was fixed, I didn't need to use the hard drive (I'm going to use it to store my videos on).

That was only one problem, however. I have a huge eBook library and I've been trying to organize it with the Calibre app. I wanted to be able to find a specific genre (like cozy mystery, thriller, etc.,) without having to look through every single one. Once I had all my books in Calibre I decided just to export a list of everything, so that it would take up less space. So, I did that and then got rid of Calibre. Somehow, and I honestly don't know how, my folder of 'books to read' was gone. I searched everywhere on my laptop for it until I realized that the entire folder had gotten moved to Calibre and that Calibre had deleted it when it uninstalled. I keep my books separated by series, title, etc., and no other folder was in there aside from the 'books to read'. I had my monthly books; books for October/Halloween; series I wanted to re-read/read... it was all just gone. I was able to pull most of it off my Kindle Paperwhite, but one series I couldn't get back.

If that wasn't enough, I was without Internet connection for the longest time. My parents both had it, and I had it on my phone, but my laptop just wasn't connecting. I'd tried turning it off and back on at least three times, which always works, but this time it didn't. Finally, after the last time, I decided to check for any problems and my laptop immediately found and fixed it and it was restored late last night.

(This is unedited. I've been dealing with so much inflammation lately that I don't have the energy (physical or emotional) to write a post and then edit it. Sorry for any mistakes, which I'm sure there are).

[ellaintrigue]

Sigh.

[dddemigirl]

I don’t feel complete.

🏥⚕️🩻🩺💊

[tears-that-heal]

Dear Lord! More health issues???

It’s like I’ve become a rag doll with my seams coming speedily, undone. Now l‘m greatly at risk to loose a limb, or even my head. What makes it more frustrating is that it’s not at all from lack of self-care. It’s just part of having an imperfect, dying human body. 😣

This time it appears I may have a tooth infection, which can easy compromise the body’s immune system and cause other health problems to surface. Like symptoms of a flue or cold to name a few. I’ve dealing with bad sinus headaches for days which basically includes my entire face. Jaw, teeth, eye sockets; everything at skull surface. Thank God, my hubby has strong pain meds. I wouldn’t be able to look at a screen rn. My eyes have been very sensitive to any bright lights. *sigh*



Despite all of this….I still have Hope. I know I’ll get through it cause Jesus will stitch me back up and set me upright once again. It is He who makes this life worth living. God our Father is always So Good! ❤️ His Love Endures Forever 💕

He’ll help me get seen by a good dentist, and He’ll provide me the means to receive what I need to be healed. He’s done it before; He’ll do it again. In Jesus name!

***

UPDATE:

Woke up this morning with my face not throbbing in pain. I got desperate yesterday and tried my some heavy duty pain killers that my hubby had. It completely turn things around for good. I’m relieved that I can function more normally again, and not suffer while I push myself to do my daily responsibilities. Of course, seeing a dentist is still top priority, but until I can get an appointment, I’m able to get things done. Thank you Jesus for those smaller victories!!! 💊🦷

[wisedreamerreview]

Survivors

While half listening to the radio playing I thought I heard the personality say that June is Cancer Survivors Month. Unsure if I heard correctly I did a quick web search. Guess what? It is actually cancer survivors month: https://www.nfcr.org/blog/celebrating-national-cancer-survivor-month/ Currently, I’m sitting here, in my chair, in front of my computer, one of my dogs close while I listen to…

[rcsvendsen]

All His Work is Done in Faithfulness

“For the word of the LORD is upright and all his work is done in faithfulness.” Psalm 33:4 Pregnancy has never been very fun for me. I suffer from extreme nausea during the first trimester which often lands me in bed for about two months straight. After that, I slowly pull myself back onto my feet only to get knocked down again by excessive fatigue. I struggle forward like I’m wading waist deep…

[bloggercookie]

Reflections on January 2024: Balancing Family, Health, and Career

Explore the highs and lows of January 2024 as family emergencies, health struggles, and work demands take center stage. Reflecting on challenges and seeking balance amidst chaos.

January 2024 was a month filled with scattered energy, exhaustion and emotional baggage carried forward from the previous year. As my mother returned home from a surgery and my sister recovered from a sleepless hospital trip, stress enveloped the first week. Our cook’s erratic behavior led to her quitting, prompting me to take on additional responsibilities like laundry and medication management…

[weirdocritter]

So recently my physical health has been getting way bad to the point i struggle to do the most basic day to day tasks like making myself food, using the bathroom or taking the dog for a walk

Which lead to me skipping my practical classes (basically just work) all of last week, because i'm just unable to get to work and then stand for 7 hours straight in a crowded loud place

And this morning my mom told me to just go see my doctor literally just so i can get a stamp on a piece of paper so i can have the absences excused

But im literally not able to do that im not able to even go there and i dont fucking know what to do anymore

[draftmare]

My neurologist gave me a new medication for “breakthrough migraines.” Trying it for the first time tonight. One of the side effects is…headaches. 😆 So, that seems pretty counterproductive.

Anyway, don’t think I’ll be taking it again. Making my body feel weird.

[ancient-reverie]

a moment of silence for all us disabled ones who had to watch each of their friends move on with their lives without you and get jobs, go to school, have partners come and go, get engaged and move house etc.

shout out to my fellow struggling people who are still sitting in the same bedroom they grew up in. the ones who can't get a job, can't make new friends, can't find a partner or partners, can't move house and can't go to school.

I hope one day we can all find someone to at least sit with us in our rooms. I see you and I understand... and I'm sorry we can't be that person for each other

[praiseinchains]

Mental Reset Day (8/11/24)

Despite having a horrible headache all day, today was very enjoyable :-) My day started off with writing a letter to myself about the past week and the upcoming week, which was nice and then later in the morning I made my bed. I knew it was going to drive me crazy if my bed was messy and I didn't want anything to disrupt my mental health day.

I think my favorite parts were writing and also listening to more of my audiobook, The Sun Down Motel. The speakers are a bit too slow for my liking, but thankfully I can speed it up when listening to it.

While I wouldn't say that any part of my day was disappointing, I have to say I'm sad that I didn't have the energy to watch videos on my YouTube playlists. I used that time to take a Tylenol for the worst of my headache and take a nap, which was definitely needed (I'm REALLY hoping we get the rain tomorrow so that my headache might get better).

I watched two movies today, one of which was on my 'movies to-watch list'. I watched The Clique (geared to a younger audience, but I've been wanting to watch it for a while and I have to say it was still enjoyable - I'd probably watch it probably one more time or something) and then I also watched Bride Wars, which I have on DVD. I've been seeing so many clips for it on Facebook that I decided to just watch the whole movie again, and it didn't disappoint :-)

I'd say the most challenging part of my day was just the looming thought of my check-up tomorrow. I've had problems with my vision since I was a kid and got glasses when I was 14. Even though no one ever mentioned anything, I always lived in fear of losing my vision, which I'm not sure is a normal fear to have unless you know that something is wrong. Now that I know it's an actual possibility, I just can't get it out of my head. When I was first diagnosed, I was scared to death of going to sleep because I feared I would wake up and suddenly be unable to see. I've gone through so many emotions since I was diagnosed, but I seem stuck between fear and anger: fear of losing my vision and anger at my birthmother for not helping the situation. She had a lot of issues and unfortunately chose to abuse drugs when she was pregnant with me. Thankfully, it's not left much of a lasting impression (I do have SOME issues), but it has left me incredibly sensitive to how my body metabolizes medication. When I was 15 I was hospitalized because the medication they gave me for my wisdom teeth removal made my blood pressure drop so low. With NMO, prompt treatment is necessary to avoid severe complications (like losing your vision) but because my body is so sensitive to medication, I've been unable to start anything. My heart problems are a major contributing factor and I'm just so angry that I not only HAVE this disease but that I can't even take the medication I need to avoid future complications.

However, as much as I'm afraid of losing my vision, I had to make myself realize it was very much a possibility (which is why I'm so afraid for tomorrow). Rather than ignoring it as I usually do, I decided to take action and try to come up with future plans for what I COULD do if that possibility ever becomes a reality. Like Dumbledore says: "It is the unknown we fear when we look upon death and darkness, nothing more."

By taking action and coming up with plans for the future, I'm doing my best to combat that fear. While I pray daily that it doesn't happen, I know it can, and I refuse to be unprepared. Other than tornadoes, losing my vision has always been my greatest fear, but despite what I've always thought, it wouldn't be the end of the world (even if it felt like it for a while). I can still have a very enjoyable life with certain modifications. I will fight my hardest to keep my vision intact (I truly believe the body can heal itself) but I will also try to accept the possibility of what could happen in the future.

[inkskinned]

love when men cry about body hair bc "it's hygiene" and yet 15% of cis men leave the bathroom without washing their hands at all and an additional 35% only just wet their hands without using soap. that is nearly half of all men. that means statistically you have probably shaken hands with or been in direct contact with one of these people.

love when men say that women "only want money" when it turns out that even in equal-earning homes, women are actually adding caregiver burdens and housework from previous years, whereas men have been expanding leisure time and hobbies. in equal-earning households, men spend an average of 3.5 hours extra in leisure time per week, which is 182 hours per year - a little over a week of paid vacation time that the other partner does not receive. kinda sounds like he wants her money.

love that men have decided women are frail and weak and annoying when we scream in surprise but it turns out it's actually women who are more reliable in an emergency because men need to be convinced to actually take action and respond to the threat. like, actually, for-real: men experience such a strong sense of pride about their pre-supposed abilities that it gets them and their families killed. they are so used to dismissing women that it literally kills them.

love it. told my father this and he said there's lies, damned lies, and statistics. a year ago i tried to get him to evacuate the house during a flash flood. he ignored me and got injured. he has told me, laughing, that he never washes his hands. he has said in the last week that women are just happier when we're cooking or cleaning.

maybe i'm overly nostalgic. but it didn't used to feel so fucking bleak. it used to feel like at least a little shameful to consider women to be sheep. it just feels like the earth is round and we are still having conversations about it being flat - except these conversations are about the most obvious forms of patriarchy. like, we know about this stuff. we've known since well before the 50's.

recently andrew tate tried to justify cheating on his partner as being the "male prerogative." i don't know what the prerogative for the rest of us would be. just sitting at home, watching the slow erosion of our humanity.

[kindnessoverperfection]

Please, if you can, take a moment to read and share this because I feel like I'm screaming underwater.

NPD (Narcissistic Personality Disorder) stigma is rampant right now, and seems to be getting progressively worse. Everyone is using it as a buzzword in the worst ways possible, spreading misinformation and hatred against a real disorder.

I could go on a long time about how this happened, why it's factually incorrect (and what the disorder actually IS), why it's harmful, and the changes I'd like to see. But to keep this concise, I'll simply link to a few posts under the cut for further reading.

The point of this post is a plea. Please help stop the spread of stigma. Even in mental health communities, even around others with personality disorders, in neurodivergent "safe" spaces, other communities I thought people would be supportive in (e.g. trans support groups, progressive spaces in general), it keeps coming up. So I'm willing to bet that a lot of people on this site need to see this.

Because it's so hard to exist in this world.

My disorder already makes me feel as if I'm worthless and unlovable, like there's something inherently wrong and damaged about me. And it's so much harder to fight that and heal when my daily life consists of:

Laughing and spending time with my friends, doing my utmost best to connect and stay present and focused on them, trying to let my guards down and be real and believe I'm lovable- when suddenly they throw out the word "narcissist" to describe horrible people or someone they hate, or the conversation turns to how evil "people with narcissistic personality disorder" are. (Seriously, you don't know which of your friends might have NPD and feels like shit when you say those things & now knows that you'd hate them if you knew.)

Trying to look up "mental health positivity for people with npd", "mental health positivity cluster bs", only to find a) none of that, and b) more of the same old vile shit that makes me feel terrible about myself.

Having a hard time (which is constant at this point) and trying to look up resources for myself, only to again, find the same stigma. And no resources.

Not having any clue how to help myself, because even the mental health field is spitting so much vitriol at people with DISORDERS (who they're supposed to be helping!) that there's no solid research or therapy programs for people like me.

Losing close friends when they find out, despite us having had a good relationship before, and them KNOWING me and knowing that I'm not like the trending image of pwNPD. Because now they only see me through the lens of stigma and misinformation.

Hearing the same stigma come up literally wherever I go. Clubs. Meetings. Any online space. At the bus stop. At the mall. At a restaurant. At work. Buzzword of the year that everyone loooves loudly throwing around with their friends or over the phone. Feels awesome for me, makes my day so much better/s

I could go on for a long time, but I'm scared no one will read/rb this if it gets too much longer.

So please. Stop using the word "narcissist" as a synonym for "abusive".

Stop bringing up people you hate who you believe to have NPD because of a stigmatizing article full of misinformation whenever someone with actual NPD opens their mouth. (Imagine if people did that with any other disorder! "Hey, I'm autistic." "Oh... my old roommate screamed at me whenever I made noise around him, and didn't understand my needs, which seems like sensory overload and difficulty with social cues. He was definitely autistic. But as long as you're self-aware and always restraining your innate desire to be an abusive asshole, you're okay I guess, maybe." ...See how offensive and ignorant that is?)

Stop preventing healthcare for people with a disorder just because it's trendy to use us as a scapegoat.

If you got this far, thank you for reading, and please share this if you can. Further reading is under the cut.

NPD Criteria, re-written by someone who actually has NPD

Stigma in the DSM

Common perception of the DSM criteria vs how someone may actually experience them (Keep in mind that this is the way I personally experience these symptoms, and that presentation can vary a lot between individuals)

"Idk, the stigma is right though, because I've known a lot of people with NPD who are jerks, so I'm going to continue to support the blockage of treatment for this condition."

(All of these were written by me, because I didn't want to link to other folks' posts without permission, but if you want to add your own links in reblogs or replies please feel free <3)

[realstrap]

07/20/2024

Time sensitive!

Our landlord is coming with the electrical company on the 23rd to finally fix our energy issues, and we need to get this house clean

We're short on money and out of supplies and we need to get it done b4 then

$90 needed

CA: $lezsalt/$sleepyhen

Vm: wildwotko

Dm 4 PP