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[anonymous-journal]

I just want to feel loved and accepted.

And I felt that from you.

Until now.

[anonymous-journal]

If I’m that much of a problem, just say so. I’ll kill myself if that’s what you want.

[anonymous-journal]

maria luiza

[anonymous-journal]

source

[anonymous-journal]

[anonymous-journal]

Monday, March 28th, 2022

I have been really sad lately. I haven't been able to find a job. It's been a headache.

But this week is a new week and I will not let myself be upset. I am going to do everything I can to make myself happy. To do this I set myself goals.

I want to paint more.

Become fluent in ASL and spoken French. Eventually I would like to learn LSF.

Clean the house more so my boyfriend doesn't have to take care of me as much.

Watch more movies.

Read more books.

Blog more.

Do ballet/yoga exercises.

I set a to-do list in my reminders on my phone for every day of the week. It's a lose to-do list and I have room in my day to be lazy too.

I have been looking for work from home jobs lately. It would match me the best.

We have 4 bedrooms and to help break up my day the rooms are all important (thank god I have no kids).

My boyfriend has his office/guest room. I have no reason to go in there much.

I have my own office/guest room. I intend to work in there when I get a job.

The primary bedroom of course.

Then there is the basement and basement bedroom.

The basement is like a second living room - great for the summer months! So cold down there! We keep the video games and workout stuff down there. Then there is a room off of the basement. That is going to be the library. We want to get bean bags and blow up furniture to add to the futon down there. There is where I will be reading and painting on hot days.

This way I wont feel like I am trapped in the house. Every room gets used and has a purpose.

I also put in to give my dog a walk every few days (she's small and gets tired fast so every few days is okay). We have a backyard for her to go crazy in and I already go out with her for 30 minutes at a time.

Monday's I go to physical therapy. Subject to change when I get a job...

I hope I get a job.

[anonymous-journal]

I know that your situation is so hard and I can't even beggin to understand how you feel. But I read your posts. There's people listening. And I truly wish that you have a good day today

Thank you so much! I really needed that. It's been a tough few days... Same goes for you! I am always here!

[anonymous-journal]

You will never find the same person twice, not even in the same person.

[anonymous-journal]

“I am so sorry to all the people I hurt while I was hurting.”

—

[anonymous-journal]

Jane Austen - "Sense and Sensibility"

[anonymous-journal]

[anonymous-journal]

Positivity posts: You can do anything you set your mind to! Go out there and do it!!

My disabled ass: Can't relate

[anonymous-journal]

March 5, 2022

Multiple posts in one day.

The last one was more of an introductory. If you have a myopathy you can relate, type of post.

Anyways, because of my disease it's very hard to brush my long hair. Today is my hair appointment with my favorite person ever, my hairstylist.

I found her online and she was the first person I met when moving to this state. She's so sweet and cares so much about me and vice versa.

I texted her after my second hospital visit asking her to chop off my hair. It's too hard to take care of and short hair is much easier.

I cried making the appointment because she was so sweet about it and I just know I'm going to cry today.

Hell, I'm crying right now.

-A

[anonymous-journal]

March 5, 2022

Hello,

This is my first ever post on this blog. In this blog I am going to be vulnerable. Because if I die due to my disease then well maybe someone will read this someday. Maybe someone else out there can relate to what I am going through.

So, I am going to start from the very beginning.

When I was a kid I loved sports and P.E. However, it always caused me so much pain. I thought, because of the phrase "no pain, no gain," that everyone felt it. So I didn't complain.

I pushed myself and did ballet, cheerleading, and swim team. It hurt, but I loved it!

Fast forward to being 22 and living on my own with my boyfriend. Walking malls progressively got harder and harder. I just thought it was my asthma.

Fast forward to being 24. Moving into a new home and getting in fights with my boyfriend because it's too hard for me to lift furniture. But we have to get it done. Through agonizing pain and tears it gets done. I think, "I'm just weak."

Now every morning I am throwing up, even if I have nothing in my stomach foamy bile comes out. I can't pick myself up, I can't keep anything down. Finally one November morning in 2021 I call out of work. That evening I go to the hospital. I was out of it all day.

I can't keep myself upright. We get to the ER and sign in. A security guard saw me swaying and asked if I needed a wheelchair. I nod yes and he runs and gets one. I sit down and black out.

I wake up in the ER hooked to things. The nurse is begging me to stay awake. The doctor asks my name. I tell him, I think. He asks if I was to be resuscitated. I say yes, I think.

I pass out again.

When I come to, my boyfriend is crying begging for me to wake up. If I wake up he'll get us a dog. I have never seen him more broken. I just remember smiling but I couldn't stay awake.

Visiting hours pass and he has to leave. I cannot imagine the heart break he felt leaving me there alone. Not knowing what is wrong with me.

The hospital I was at had no rooms (thanks COVID, not like I'm dying here or anything) so I had to be transported to another hospital that had rooms.

I was transferred overnight around 1AM. I got a room and texted my boyfriend the room number.

I'll skip details, mainly because I was so groggy I couldn't remember. But after some scans and tests they found out I have a pulmonary embolism, a nodule on my lung, a large cyst on my ovaries, and hypoglycemic. That explains be being out of breath all the time but not the vomiting. Maybe I'm puking from the pain, we thought.

I was discharged and need to follow up with a lung nodule specialist and a hematologist. We enjoyed Thanksgiving and then I was back at work.

Still puking every morning. I get my blood drawn. 10 vials. The next day I am weak. So weak I cannot lift myself off the toilet. My boyfriend helps and my arms felt like wet spaghetti noodles slipping out of his hands. I start to panic. "Call 911". I cannot get myself downstairs to the car to get to the hospital.

We somehow get myself to the ground and when the medics get here they put me on a chair and carry me downstairs.

We go back to the same hospital. They cannot figure it out. They say I am weak because I have been laying down so much. Makes sense. They tell me to follow up with an endocrinologist.

I get discharged and do my follow ups. Nothing.

I get tested for EVERYTHING. I'm fine.

Am I making this up? I am in so much pain why can't I get any answers. A month and a half pass. I get weaker and weaker by the day. I call out of work and go to a different hospital. One with a better track record. We get to the ER, and I'm in a hospital wheelchair again. I can't walk long distances and used a cane since my second hospital visit.

Once I get a doctor in the ER and explain everything he immediately wants to admit me. He says, "I understand and can appreciate how disabling this is."

I just start crying. I am finally being listened to.

A muscular neurologist comes in. Why? I don't have anything wrong with my brain (except for the stroke I had at 17 in 2014... long story).

He wants to take a biopsy of my muscle and an MRI. Okay. So I do the MRI, the next day I go into surgery.

We find out 2 days later, I have a very rare disease. A lipid storage myopathy. There's 12 different kinds and even to this day we don't know what kind yet.

So basically, you need lipids in your cells to build muscle. But, my cells aren't letting the lipids into the cells. So they're just building up around the cell. So when my muscles contract (anytime I move) it causes agonizing pain.

There's vitamins to help me feel better. But I still can't stand for a long time and walking is super hard.

I am out of the hospital now. I got fired for going to the hospital too much so I am dealing with that. I have 6 doctors to be following up with plus physical therapy. I need a walker (mine is so cool, it has a chair in it) or a cane depending on how much I need to move. I am in the process of getting a mobility dog. I am also looking for work from home jobs but applying for disability in the meantime.

I been looking everywhere for someone with the same condition as me. But, it's rare and usually happens to you in the first few years of living.

I used to be able bodied, now I am not. Having your freedom ripped away is awful. Not trying to say everyone who is disabled has not freedom. But when you have your walking ability ripped away, it's exactly what that feels like.

I went from dancing at a wedding in July 2021 to barely being able to walk by the end of the year.

I am heartbroken.

-A