waitwiah

[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 💕