waitwiah

[waitwiah]

No really, what is actually happening?

\Post05\: Be so f*cking for real right now.

**TRIGGER WARNING: Talks of illness and terrible language. I’m so sorry.

I DID NOT WANT THIS TO BE A POST BUT HERE WE ARE.

So – this is going to be a short long story time and rant session because I need it right now (so apologies in advance).

Hello everyone,

I hope you’re all doing as well as you can be right now, considering… you know.

It’s Alia again, still trying to figure out what is actually happening. I am going to preface this by saying I have already been to therapy this week, but needed something else to help me get through this spicy situation right now – writing it all down.

I have not worked since Tuesday, January 7th. Yes, that is over 3 weeks ago. So the funny thing about this is, I was hospitalized for about 2 of those weeks for two separate things at two separate hospitals. The first hospital stay was local to me at a research hospital for my always inconvenient blood sugar swings. Essentially the care team explained I was producing too much insulin in certain situations, causing swings in my blood sugar levels. I did not even have time to celebrate this breakthrough! 😩

However, the physicians did not understand why this was happening and wanted to experiment with a medication to test its effects on my insulin levels. In short, they gave me meds for something I don’t have but it is a similar disease process so they hope it will work. Funny story, the medication side effects mimic the symptoms I experience when my blood sugars take rapid swings (lethargy, slurred speech, blurry vision, confusion, etc). Because of that fun situation, it was suggested that I live under supervision (full-time was their suggestion, however that is not feasible for my current work/health situation) while we see if the medication is effective. So instead of going home after being discharged from the hospital, I went to stay with my mom almost against my will. I did not have my car and I would be over 3 hours away from my place of work and apartment. Oh – did I mention that due to a situation I could not control, my boss revoked my work from home privileges? And even after providing proof to both HR (HR agreed I was not at fault) and my boss that it was beyond my control and did everything I could to remedy the situation this privilege was never reinstated? You know what that means, right? I will receive no pay, because it’s less than a month into the year and I used all my sick time and vacation time BY BEING IN THE HOSPITAL, for the time I need to be under supervision, which my care team agreed should be around 2 weeks. So, I went to live with my mom for that time so I could “recover” from my hospital stay.

SPOILER ALERT: THERE WAS NO RECOVERY

My mother, who I was staying with, bless her heart, had a total knee replacement 36 hours after we arrived at my childhood home. And you know what that means? Taking care of someone with limited mobility while I’m trying to stay on top of a new medication schedule and managing crazy symptoms – sounds fun, right? So instead of focusing on recovery and mitigating medication symptoms, I’m focused on making sure my mom gets to the bathroom okay, not sleeping because I need to make sure she gets her medication on a proper schedule, refilling ice machines, warming up food, making sure she’s actually eating and drinking, and trying to keep her from having unrealistic expectations about healing after such a big procedure. Did I mention that I also could not work from home during this time? Guess what happened. I’m being so serious. Guess. What. Happened.

Funny story again, I lasted 4 days. FOUR F*CKING DAYS before I was in the hospital again. From “doing too much” I guess, my feeding tube decided to become folded and twisted in my intestines and stop functioning. This means: my medication schedule – f*cked. My mental health – f*cked. My road to recovery – f*cked. Oh and my blood sugar – totally f*cked as well, yes.

We’re going to skip the ER doctors being completely confused about how I have hypoglycemia without a tumor or diabetes and how my blood sugars don’t seem to ever stabilize for long. Fast forward to my admission. The absolutely kind and wonderful ER doc said they would do everything possible to acquire the correct feeding tube to replace mine (did I mention it was just replaced 6 days before?). Loved him; I would totally recommend this man as a physician and trust him with my life. The day after I was admitted, my care team came to my room and said, “hey girl, we got your tube. Everything is going to be great. We’re going to try to fix your tube first, and if it that doesn’t work we’ll just replace it, don’t even worry about it.” I’m of course like hell yeah, thank you Luke Wilson (my hospitalist looked just like Luke Wilson and he was also the kindest, most understanding person and took all of my concerns seriously).

Surprise! Guess who did not have the right tube? Guess who refused to look at the note in my medical record detailing the proper tube size and length for my body? Guess who placed a comparable tube in my hand, had me sign a consent form saying this was the tube to be placed and then DID NOT place it? Guess who said it was “impossible” to guarantee my NJ tube would actually be an NJ instead of an NG despite every other physician being able to do it for the last 2+ years? Guess who left the same tube inside of me even though they could not advance it, and was aware that is was UNUSABLE because it was in the wrong position? Ope, guess who also said I was not throwing up blood after the procedure, despite the nurse and my family witnessing it, and the nurse taking pictures of the blood explaining that it was in fact blood? You’ve guessed right – the GI doctor on staff!

When she came into my room, I was on the phone with my partner and placed my phone on the bedside table. THIS WOMAN PUSHED THE TABLE WITH MY PHONE OUT OF REACH FROM ME (AND MY PARTNER OUT OF EAR SHOT), AS IF SHE WERE GOING TO EXAMINE ME FROM THAT SIDE OF THE BED, AND WALKED TO THE FURTHEST PART OF THE ROOM ON THE OPPOSITE SIDE OF THE TABLE AND PROCEEDED TO HAVE A CONVERSATION WITH ME. Now, I’m not going to say it was intentional, but it seemed intentional to me…

Now, this woman, tone dripping with snark and disdain from the moment we met, not only insisted I just “try eating by mouth” like I hadn’t been trying to do so without passing out for the last 3 years, prescribed tylenol for my level 8 pain due to the tube being in the incorrect position, continued to fight me about the position of my tube (it was not in the right place, everyone on staff agreed it was incorrectly placed besides her)… but this woman had the gall to say she did not feel comfortable advancing the current tube and refused to remove the tube despite it continuing to cause pain and discomfort to the point where I had not slept in days and it brought me to tears just to urinate (TMI, I’m so sorry). Then she confessed to not having enough experience with NJ tubes and would see if a colleague of hers could advance it (they did not even try to advance it because the colleague said no, and did not give a reason for the refusal, and then they also refused to remove the now extremely painful tube despite there no longer being a plan to advance it).

You know what is worse than the GI doc eventually saying, “I actually don’t do these often, so I just did what I felt was best”? This woman told me, and I quote, “NEXT TIME YOU SHOULD GO TO YOUR HOME HOSPITAL TO HAVE YOUR TUBE REPLACED THE WAY YOU WANT IT AND BRING EXTRA FEEDING TUBES WITH YOU TO THE HOSPITAL.” She then accused me of telling my family that she “took out my current feeding tube, rubbed feces on it, and shoved it back down into [me].” Obviously, I never said that, because how would I even know she did that if I were asleep for the procedure? What was explained to me was that she removed the tube, cleaned it, tried to remove the bend, and put it back in.

Now when I say it took the strength of my entire family line to hold me back after she accused me of lying on her and feeling emboldened to talk to me any kind of way, especially after the table incident…

So, in a very demure, very calm way I explained a few things:

I called the hospital ahead of time asking if they performed this specific type of procedure.

I was admitted through the EMERGENCY ROOM. Meaning EMERGENCY situation. I came to this specific hospital out of necessity, not want.

My “home hospital” was an additional 90 minutes away in rush hour traffic.

My regular physician who would have performed this procedure was ON VACATION until the following week.

Last but certainly not least, I cannot just have feeding tubes on my person at all times because I am not a medical supplier or physician – I cannot have this equipment with me???? Like wtf???? How would that even work????

This woman then proceeded to tell me it was impossible for the hospital to order the correct tube, despite my “home hospital”, which is in the same system, just downtown, replacing my tube with the correct model routinely. I also attempted to explain (she had stopped listening to me at this point and said we just weren’t going to continue this conversation and that she was going to document that I refused treatment without explaining that I needed this specific tube for a reason and refused to document our conversation at all…) that it is common that my tube is overlooked because it is not the standard size and often causes some confusion to physicians because it looks different from the smaller, traditional NJ tube. She refused to listen any longer and left my bedside.

But hey, guess what? While she was putting the tube in the wrong place and refusing to remove it, she found that my nasal septum had eroded so badly from continuous bridling (tying a silicone, wire reinforced tube around by nose to make sure my feeding tube does not become dislodged) that my nose was on the verge of collapse and I could not have my tube secured in that way ever again. And because of this, I needed a more permanent tube, a surgically placed tube directly through my abdomen into my intestine. She also said I would be ugly with a collapsed nose. So that was fun information to have.

We will talk about the surgical feeding tube placement in a different post because the way people think I’m an idiot and that I don’t care about my health is beyond me.

So, the following day the same GI provider came back to my room, fresh faced, wearing lipstick and dangly earrings, to explain that the tube was actually available for order, and they just needed to communicate with my “home hospital” to see what the model was! SHOCKER! She said she “prayed all night about me” (I’m an atheist, but I do not look down upon people who are religious because that is stupid to do. However, I was not impressed by this confession because of how horrible she had been to me at every interaction.) and would do her best to have someone who was more familiar with NJ tubes place my tube and try to have the right tube on-site within 24 hours. I was of course gracious and thanked her – I will mention that “Luke Wilson” was in the room at this time and she was acting like a completely different person.

In the end, a different GI physician who could guarantee my feeding tube would be in the right spot, changed my feeding tube and had me back in my room (without any bleeding, complications, or ridiculous pain) in less. Than. One. Hour. You read that correctly; less than an hour to replace my tube and send me on my way. Don’t even get me started on how they had my proper feeding tube on site for almost 48 hours but didn’t perform the procedure…

In summary, I was in the hospital for 7 days this time, without any source of nutrition besides sugar water through an IV, experiencing blood sugar issues, being in extreme amounts of pain, not getting a moment to be by myself to process everything, and ended up with a bill totaling well over $40,000.

Now let’s get to the good part: because I was in the hospital for nearly 2 weeks and have been out of office recovering and restarting that terrible (hopefully will work eventually) medication, I have not worked in over 3 weeks. You know what that means? I have no money. That’s right – I cannot pay my bills or even afford to use extra gas to see my partner let alone get him a gift for his birthday that’s in a few days or valentines day in a couple weeks. This month I made less than the cost of my rent. Horrendous – I know.

So you know what I do? Empty my little savings into my checking account. Then, I ask my father for help. My father, who pays other people’s rent and other expenses because he is all about helping his children, would not hesitate to help me. So I did what any child would do: I asked him if there was anything I could help him out with to make his life easier and he pay me half of my month’s salary or just the cost of my rent for doing so. I do not feel right about taking money from family and friends for nothing – I want to be able to provide something in return until I can pay back the money in full. Sounds reasonable, I think. My father says okay, cool, don’t worry about it. So I have been not worrying about it for a little over a week now and my rent was due today. The payment plan I’m on for having $1400 worth of maintenance service on my car is due soon. My water bill, gas and electric bill are due soon.

I preemptively applied for emergency government assistance a week ago just in case things don’t pan out with my father.

I applied to be a shopper for Instacart but can’t do it because my car insurance doesn’t cover “commercial use”.

I’m looking for things in my house to sell, which might have to be all the books I haven’t read yet or sentimental gifts I received over the holidays.

I asked my boss if I could work from home, and she ignored me.

I’m just so confused as to why, by no choice of my own, I spend time out from work due to a really sh*tty health condition that I am in this situation? I would spend my last bit of energy trying to work so I can pay these expensive ass hospital bills, even though I know it would render me non-functional for days. I would at least have a more robust savings account if I didn’t have these random health emergencies so frequently.

Oh – another amazing thing about this fabulous time off, it has only been extended by this extra week because the doctor who can sign off on my ability to go back to work is on vacation and has not been able to submit the paperwork to HR yet. Fun.

Lastly, if I’m out of the office for the length of one calendar month I lose my health insurance. That means that the full brunt of both hospital stays will be on my head, totaling nearly $100,000. This does not even include the cost of each specialist visit I have.

I was told to apply for long term disability, but those payments barely cover my rent (not even my bills) and would not even cover half of my moving costs if I were to “downsize”. My rent is extremely cheap for where I live. Most people pay almost double for a studio apartment just a few minutes down the road. And if I’m going to be spending an extended period of time somewhere, I need to be in a good space. Not a super fancy, high-end space, but a space that allows me to function well with this very annoying disability.

Anyway, enough of that.

After being continuously surrounded by people for 20 days, I’m now getting a moment to finally catch my breath just to have it knocked right back out of my lungs. No, I’m not okay. No, I don’t want to talk about it (any more than with this post).

I will end by saying – check on your people. PLEASE. There is a lot going on in the world right now.

If you need to, put your phone on “do not disturb” for a day. Take a moment. Breathe. Dissociate. Go for a walk. Meditate. Scream. Cry. Throw something; because, in the words of the wise prophet GloRilla, “at the end of the day, the day gotta end.” And you’ll be able to try something different tomorrow.

Love you all.

Alia xx

[waitwiah]

"It was his hat Mr. Krabs; he was number 1!"

\Post04\: What is going on waitwiah fam!

Ope – First let me put a lil’ disclaimer: this is not a motivational post (not for everyone at least).

**TRIGGER WARNING: Talks of *llness (not sure if this counts as a trigger but just in case)

You know that feeling when the vibe is just not right? Like everything feels kind of off, but in a weird way? That is kind of how I’m feeling right now. I’m rummaging through the confines of my mind trying to figure out why I’m receiving rejection after rejection from doctors held in such high esteem. These are top tier doctors from top tier research hospitals. Allegedly.

I find it so very odd that physicians with PhDs in research or those who currently run research studies are not jumping at the chance to solve Ms. Mystery over here. There are so many underdiagnosed diseases (and over diagnosed) that do not have known cures. So. Many. There are people researching the cure to a cancer that affects less than 20 people per year; people researching diseases that only exist in remote populations in one corner of the world. So I know these clinicians exist – the clinicians willing to go the extra mile for their patients, who do not care about riches or fame, those that just want to put good into the world.

However, let me appeal to the money-hungry clinicians for a second: why would you not want the chance to say that you were the person who solved the “unsolvable”? The “too mysterious” condition? To actually find the etiology of the disease of “unknown etiology”? To be the one who publishes that paper, who does those major interviews, the one on the news enjoying the perks that come with making a novel discovery – wouldn’t that be nice? What a dream it would be to find that one person willing to go all Buzz Lightyear for me just to make sure I live past the age of 30… Well – I did find that person.

I found the one group of clinicians (2 to 4) willing to not turn me away or claim that I am merely a lost cause. A waste of hospital funds. A waste of grant money. A waste of time – time that could be spent helping patients with “real diseases”. The doctor I met said he would not stop until he was able to provide me with at least some answers if not a cure or treatment. But something. Something tangible to say, “look! I’m not making this up! I’m in excruciating pain every day of my existence and it's hard to live because of this! See! 120lbs didn’t just disappear for no reason! My intestines don’t work due to this!” But there I go again asking for a little too much. I do have to travel from coast to coast just to see these physicians, but beggars can’t be choosers. In my case, I can never be a chooser of my own clinicians anyway (that’s a story for another time I think).

But is asking for answers too much? Am I going too far? Well, the easiest way to answer this question if you find yourself in a similar predicament is to ask yourself this instead – “Has anyone with a rare disease ever been told they have a rare disease and given its name?” – and if the answer is “fuck yes” (that is the only correct answer actually, sorry), you’re not asking for too damn much. Research for the benefit of a patient is the bare minimum in my opinion. Reading a book to search for answers should come as second nature for a clinician! Maybe that’s a little too motivational…

Before anyone says ANYTHING, I work in the healthcare setting so I see this firsthand – yes, we do have to take into consideration how healthcare in the U.S. is a complete joke, how clinicians are extremely overwhelmed/understaffed/underfunded/underappreciated (amongst other things) and there are some people who really should not be practicing medicine of any kind… The thing is: patients should not have to carry more weight than their own. That right there is actually asking to much. Having a patient wait, like a pot of water on the stove you keep checking on to see if it’s boiling, in a waiting room while you (the clinician, not you beautiful readers of course) are over 90 minutes late to an appointment scheduled months in advance is wild work! Let a patient even think about being 15 minutes late and the whole appointment needs to be rescheduled. This just happened to me last week. Annnnnnd guess what the result was! I bet you didn’t see this coming: the physician was only able to spend 15 brief minutes with me to do a complete body check. This highly sought after physician that schedules out 5 months at a time was only able to spend a little time with me and answer a few of my questions. Then it was on to the next patient who had been waiting close to 2 hours for their appointment to start… That’s not good healthcare. That’s not quality healthcare. That’s rushed, imprecise medicine. That’s not cool.

Ugh – okay, okaaayyyy. I think I have to sprinkle some positivity in here.

Let’s circle back to the “why do physicians keep turning me away?” question.

For me I think it is language used in my medical record that got me and a misdiagnosis that the original physician refuses to change (even after being proved wrong by several tests). I’m a “difficult patient” because I come with my questions prepared or mention an article published in JAMA or something. I “refused treatment” because I could not afford it (group therapy 8 hours per day, 5 days per week) that would force me to QUIT MY JOB, costs $60k USD for the program alone and nearly $10k USD in room and board. And oh yeah – NOT COVERED BY INSURANCE. It took 3 months for Miracle Whip Clinic  (it ain’t safe out here, y’all know that) to amend my medical record to make sure it stated that I did not refuse treatment, but it was that I could not afford it and no payment plans or alternative payment methods were available when asked. But at that point the damage was done.

We will talk about the misdiagnosis thing another time, as that is a long one.

How about I attempt to end this with more positivity: If something is not right in your medical record, or if something just isn’t adding up in that clinic note or your After Visit Summary, ask questions. Speak to your patient advocate. Ask for an amendment to be made or an addendum to be added to your record to correct false information. It’s okay to let a clinician know that certain language can be damaging, or even detrimental to your healthcare and future health. These are the things that are missed by patients because no one takes the time to inform people about their options. Their rights as a patient. Patients are really made to feel like a burden the second a concern is raised and that needs to stop. If only facilities took the time to educate patients about their rights instead of having them sign a 5 page, single-spaced, 8pt font document that reads “YOUR RIGHTS AS A PATIENT” 5 minutes before their appointment starts… I digress.

Remember that you have options. You have the right to raise concerns, even when the clinician rolls their eyes or lets out an exasperated sigh. Your future healthcare team will be using these records to make informed (seemingly so at least) decisions about your care and they will follow you for the rest of your life so they need to be accurate and unbiased. YOU MUST LOOK OUT FOR YOU. Be your #1 advocate. Believe me, there will come a time when that works in your favor exponentially.

As always, you deserve the entire world and then some. ✨❤️

[waitwiah]

Do I open a bakery?

\Post03\: **TW: Talks of d*ath**

So … I’ve been lacking for real haha. Well I’m back. And I’m still sick unfortunately. People keep making a point to tell me, “you’re so strong” and it is honestly pissing me off. I know that when friends or family say this phrase there is no harm meant by it. But sometimes I don’t want to have to be strong. Sometimes I just want things to come easy since they’ve been coming with the intent to take my head off for the last year and some change.

I know – this sounds absurd. Who wants to be weak? Well, I am weak. I may not be weak willed, but my body is nothing but a fall away from falling completely apart. How does that one Fall Out Boy song go? “I’m a stitch away from making it, and a scar away from falling apart”, that is exactly how I would describe my current state of being. I am so close to having a diagnosis I can taste it (the stitch). But then another symptom arises (the scar) and it kind of makes any providers previous thoughts about a diagnosis void.

Anyway, I have told the majority of my family about my decision to pursue hospice in December. There are only a few more people to tell and I’m TERRIFIED. I cannot fathom telling my grandfather that I’m thinking about hospice! He’s 87 years old for crying out loud. I can’t do that to him…

SO, instead of facing my problems I’ve been baking furiously. I have probably made hundreds of cookies, I’ve made home made sauces, pizzas, breads, donuts; you name it. I have been tiring myself out the best way I know how: being of use to others.  All I seem to do are things for other people. My parents – crushed (rightly so). They believe I’m being unreasonable, so I bake. My aunts and uncles – “you haven’t tried everything yet”. I bake some more. My job – “your opinions actually don’t matter”. So I bake more and take a day off because I fucking deserve it. Right now, my job = hell, my life = tragic, my “rElAtIOnsHip” = feels non-existent, my relationship with my family = in jeopardy.

Bottom line: I’m trying to make the most of the time I have left and not give into the monotonous bullshit that is my life right now. You should do the same. Take that much needed break. Schedule that therapy session you’ve been putting off. Go to that restaurant you’ve been dying to try! Even hang out or call that friend you’ve been meaning to talk to for months. Honestly, life is too damn short to not do what you feel you need to do. If you’ve thought about it, and if it still seems rational in a few days – do it! It’s so hard to please everyone (I’ve found out quite recently), so I have given up on trying to do that. Oh how I am such a people pleaser at heart; my therapist says I bleed out for everyone but never take the time to see if someone is bleeding out for me. Does someone have to bleed out for me? Do I deserve that? Is it worth for someone to go through pain just to care about me????? AM I WORTH IT??? If you are asking yourself this question: YOU ARE.

This is a short one y’all. I don’t have much to say except: I might actually have a diagnosis in the works… 😏 I’ll post an update when I know more! For now, just remember that you are worth it. You’re the reason why someone goes to work/school every day, why someone wakes up every morning, and the last thing on someone’s mind before they go to sleep. You can do this (even if you don’t believe it, I do).

[waitwiah]

What do you do when it all gets too heavy?

\Post02\:Y’all! I have been M.I.A. and I’m sorry. Kind of. So this is going to be a long one. Sit down, grab a snack and a beverage (maybe of the adult variety) and let’s catch up.

*TW talks of w*ightloss & d*ath*

To say I have been going through it would be a massive understatement. I’ve been so up and down, I’m not even sure what’s next anymore. My health is worse than it was before and it really has me feeling some type of way. I leaned on my boyfriend for support a few times, not nearly enough because I’d hate to be a burden – but me being sick was taking an emotional toll on him… Let’s just say he may not be my boyfriend anymore. Who knows. I don’t know much about anything anymore. This sucks of course because he says, “I love you and I hope you get better. I want you to be healthy”.  Then, he beats himself up for “NoT BEinG tHe MaN I deSErve". I HATE THAT. Don’t beat yourself up because I’m sick and it’s hard. If anything, he deserves a healthy, happy partner. Not whatever I am. I’m not the woman he deserves. Who deserves stress and uncertainty tainting a budding partnership? I know the answer to this one: nobody.

The things you fear deep in your mind actually becoming reality is such a strange feeling. Is everything secretly a premonition? Did I manifest this subconsciously? I really thought, “If I can’t be healthy, I can at least be happy”, but the universe threw that back in my face 10-fold. And I’m proven right, for once in my life, that no one can actually stomach (pun intended) being a sick person’s partner. Obviously, this doesn’t apply to everyone, but I sure as hell believe it applies to me. Outside of familial deaths, I’m not sure if I’ve ever been this sad in my entire life. This broken and beaten down. This… hollow. This sad and sick. This sick and tired. This done.

As I was on my way to work one morning, I managed to leave my feeding tube bag uncapped, so my formula spilled all over me, my car, my feeding pump, and my work bag. That was the last straw. After the special kind of hell I had been through the last few months, this is what happens? I had to turn around to go back home and change, clean up my car with a quickness, and make my way to work. I couldn’t do it. “There is no way I’m going to get through this day”, I thought to myself. I immediately called my therapist – she was unavailable. I called my mother – she was in a meeting of course; I asked if she could step away because it was important, but she didn’t understand. What could possibly be more important than her meeting? (Side note: she called me about an hour later, saying she stepped out of her meeting and couldn’t go back in because someone else was doing her presentation. I of course said everything was fine, it obviously wasn’t, so then she began giving me a speech about how I should be more rational and not so emotional. Just what I needed of course.) My friend who I would call was on vacation and my sister that I confide in was at work. The only person left to call was my father. THIS WAS A MISTAKE, AND I FEEL HORRIBLE.

My father asked me what was wrong and all I could say was, “EVERYTHING”.

My father actually called the police that day to do a wellness check on me because he was so scared by the sobs coming from deep within the pit of my pancaked, dysfunctional stomach. Oh, how I cried. I sobbed at what my life had become. On the floor, body shaking, eyes burning, feeding tube moving around my nose. The. Whole. Nine.

Over the last 6 to 8 months I’ve developed new symptoms, began having longer pain flares (sometimes for more than 10 hours straight), lost my prescription for my feeding tube, gained it back again, been turned away by doctors and picked up by them again. I was even told I should’ve gained at least 60lbs by now (I’ve only gained 2 or 3lbs in the last 2 years) and to do more exercise and add more calories. How am I expected to do all of that?

 And the worst thing of all: I MET WITH PALLIATIVE CARE. I know what you’re thinking – I’m basically a child (in my mind at least), how can I take that step so soon? Well, I’ll put it like this: I have been fighting for so long, fighting my own demons, fighting the medical demons at the hospital otherwise known as Administration, trying to figure out my diagnosis, and dealing with several unexplained, non-specific findings on tests. There is no cure in sight. Hell, there’s barely any symptom management. The amount of pain I’m in and the weakness and the fatigue is enough to make anyone throw in the towel. SO, that’s what I kind of did. I set up a game plan for if (maybe when – I’m trying to be optimistic but realistic here) things don’t end up getting better in a timely fashion. I haven’t told my family yet, but if there’s no cure, no game-plan to fix whatever this is or lessening of this pain in the next 6 months, I’m stopping all my treatment. I’m going to just let whatever happens happen; I don’t have to tell y’all what’s going to happen. You know. I’ll be hanging out with Casper and them.

After that appointment I went down a rabbit hole. And if I’m being 100% honest (and I will keep it 100 here, that’s what this is for), I have made dissociating from my reality a daily task. It is necessary sometimes, especially when the weight of an illness/disorder/situation/disease starts to become a bit too heavy. Sometimes it is imperative you take a moment to distract yourself from your own reality – to take a break from things crumbling beneath your feet and imagine you’re standing on solid ground again. Even if it’s for a single moment or a few moments a day, a week, a month, etc.

But here I am, repeatedly fighting with doctors, nurses, administrators, insurance companies to say, “Hey! I deserve healthcare – good quality healthcare!” and for them to essentially say, “No, you actually don’t”.  I let my (microscopic) social media following know that I actually wasn’t okay, and that I needed time to myself so I wouldn’t be answering any attempts to reach out for a while.

So if you’re my family or friends reading this – I’m still not answering communications right now. I just need time to process everything. I’m probably watching the entire John Wick or Mission Impossible movie franchise or escaping in a sappy book. And no. I’m not okay. Please try to ask me that less often.

To my readers: PLEASE DON’T GIVE UP YET. Keep trying to find answers. Keep arguing with whoever you need to in order to receive quality care, quality help, quality pain management, etc. You deserve to be here. You deserve the chance to be happy and healthy. I haven’t given up yet, though I may be close, neither should you. As always I’m here if y’all ever need to talk.

Anywaaayyyy. I’m going to do my best to be more consistent on here. And I may have given up on TikTok lol. We'll see.

Remember: you deserve the world and then some.

Take care xx

[waitwiah]

Advocating for yourself?

\Post01\: The very first step to advocating for yourself is to believe yourself. Yes – believe yourself. Do not think for one second what you’re experiencing is all in your head. Tell your doctors how you’re really feeling because that one symptom can lead to the correct diagnosis. Besides, how is your physician supposed to know how you’re feeling if you won’t tell them? In talking to patient advocates on numerous occasions the one thing they each said is to always tell your doctor what’s wrong. No matter how little or insignificant a symptom may seem, every little bit helps.

How do I advocate for myself? Basically, being sick makes me mad. Like crying, screaming, throwing things mad.  I use that energy to make sure my point gets across to doctors who aren’t willing to listen. Here’s a list of things I do/recommend doing when starting on this journey:

1.       Make a list of symptoms. My rule of thumb is if something persists for more than 7 days, it’s officially a symptom and I write it down.

2.       Make a list of questions, related to those symptoms and otherwise. Never be afraid to ask questions. How can you understand your medical care without knowing about it?

3.       Write down what you would like to accomplish at each appointment. This is a big one. This step makes sure that you and your physician are on the same page. If you’re coming into the appointment with one idea and the physician comes into the appointment with another idea there will  be a disconnect which makes for an unproductive appointment.

4.       Keep track of how you’re feeling – if one day you feel like all you can do lay down because you’re extremely fatigued – keep track of that. Everything is important, especially when you’re undiagnosed.

5.       Get mad. Get angry. This is not okay and everything isn’t fine, no matter how many times you tell people that you’re fine. Process those emotions. Go throw some heavy weights around. Talk to a therapist. Lean on friends and family during this time. Do not let your feelings build up until they overflow. (I am terrible at this and of course all my emotions come out at once. No bueno.)

6.       DO SOME RESEARCH. Yes – I know. This sounds weird because a lot of us aren’t doctors and do not have a medical background. However, do research on what your doctors tell you about so that you’re able to ask informed questions. I wouldn’t recommend late night googling your symptoms, even if it is tempting sometimes.

7.       Please don’t let your doctors belittle you or how you’re feeling.  You feel like shit – let them know this is not acceptable and you need their help to get back to normal.

8.       FINALLY: keep going. No matter how many times you feel like this fight is hopeless or you feel like there is no end in sight. Take a break, sure. Take the time you need. But once that break is over, pick up right where you left off.

Are these things easy to do? Absolutely not. Will you learn to do them despite it being challenging? YES. Go easy on yourself. This is likely something you never thought you would experience, so take your time.

Take care 💕

[waitwiah]

Who am I?

\post00\ My name is Alia and motherf***** I’m ill. Like actually though. I’m twenty something and enjoy reading, watching movies, cooking & baking, singing, and watching anime. I’m on my diagnosis journey where I just have a bunch of symptoms that make my life a little difficult. I’ve always wanted to start a blog to share this journey with people who are going through similar things or just a way to share in general. My own personal therapy in lieu of a therapist I guess (while I’m trying to find one). I am trying out this blog thing to see how it goes. So – Welcome to my life. Back to the subject at hand.

What are those symptoms you ask? I’ll name the top five most annoying things:

1. I’m always so damn tired and cannot sleep. The fatigue is one of the worst things I’ve experienced in a long time. I fall asleep standing up, walking, talking, working, etc.

2. *TW talks of medications*: THE PAIN. Oh my goodness gracious the pain. Lay down – pain. Wake up – pain. There is always pain. I have abdominal pain that is officially chronic. I have abdominal pain with movement, rest, touch, and it is even unresponsive to pain medication which is fun. I have tried dilaudid, morphine, fentanyl, hydrocodone, bentyl, mirtazapine, olanzapine, nortriptyline – all of the pain medications and antidepressants out there. I lived an active thick girl life style. Traveling, working out 4 to 5 times a week, eating healthy, and weighed around 220lbs at 5’7”. I know that sounds very heavy. But keep in mind I was deadlifting and squatting 400lbs at one point and had just hit a bench press PR right before all of this happened. Ugh. Anyway.

3. *TW talks of sharp objects and w*ightloss & d*ath*:  THE PAIN part 2. I have what is called “postprandial” abdominal pain. Every time I eat or drink anything I get what I like to call “the stabbies”. What are the stabbies you may ask? The stabbies are the sensation I feel whenever I eat or drink; like a million tiny razorblades slicing and stabbing my insides. SO I DO NOT EAT OR DRINK. I know, I know. It sounds crazy. “Just suck it up” one may say (just like most of my doctors say). But imagine being in the worst pain of your life because you opened your eyes or performed some other basic bodily function – it’s not so easy to suck it up. Because my intake had decreased so dramatically I was dying; skin mottled, lost 80lbs, bones sticking out, breasts deflated, ASS DONE FELL OFF. Not a single one of my clothing items fit me and I had to spend a bunch of money on new clothes that only temporarily fit because I continue to lose weight. Now I have a feeding tube that goes directly into my intestine so it completely bypasses my stomach. This has quintupled my caloric intake, but I still continue to lose weight…

4. Gastroparesis – kind of.  According to Mayo Clinic, gastroparesis is a condition that affects the normal spontaneous movement of the muscles (motility) in your stomach. I have delayed stomach emptying and a slow intestine. This could be contributing to the pain that I experience but a lot of my docs don’t seem to think this is related and I’m not sure why. Because everything moves so slow and releases into the intestine spontaneously, my blood sugar takes random swings downwards causing me to have altered mental status. And because my intestines move slowly I’m prone to TMI fecal impactions (stool back ups).

5. THE SEIZURES. I have seizures whenever my blood sugar drops quickly that present as altered mental status or focal aware seizures where parts of my face jump or droop. Because of state laws, you cannot drive until 6 months of no seizures or altered mental status episodes. So that takes away a lot of freedom.

 There are plenty more but these are the ones that make my life the most difficult. I’m always open to connect with others with similar symptoms or those who just wanna chat about things. I will try to blog about different topics once per week and do a little vlog action over on tiktok (@ro_lamperouge) weekly as well. Thanks for reading 💕

[waitwiah]

What is, “wait, what is actually happening”?

Essentially, I wanted to blog about my journey through the healthcare system,  getting diagnosed, and everything in between. Welcome 💕