#Spoonie: Youcaring / Health Update

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YouCaring Update: I still need donations to help with paying for my surgery. I am at $50 so far. I am super grateful and appreciative of everything. I still haven't got hold of the lady in Financials. I don't know if I could just waltz up to the building to talk with her. But since the school year has ended I feel very tempted to do this.

General Health: I am having to modify my food once more. I've been eating as little as possible to prevent stomach issues. But the last few weeks have been lazy and just eating what's been cooked here. Which is generally spicy and meats I'm not supposed to have. 

Last night my pain levels were terrible that they'd incorporate themselves in my dreams. We had another night storm the room became hellish for me but couldn't do much about it. 

#Spoonies: Surgery Progress...so far.. if it can be called that.

So...

Yesterday's surgery phone calls started optimistic and quickly crumbled within an hour.

Didn't get voicemail but actual people for financials and appointment setter. Except voice mail again for the person who is supposedly the one to tell me how much the surgery is going to cost when everything is said and done.

Found somewhere that I can email. Suggested for billing and other but finding out the cost of my surgery is technically...billing , right? I decided it was. Hopefully, someone somewhere answers my question.

I looked up the cost of the surgery and I've completely underestimated what it will be where I'm at. I don't understand why the estimate for our capitol seems lower than where I'm at. I've increased the donation amount on my youcaring account. I appreciate any and all shares of it.

Every school year I make between 2k-3k and I'm just frustrated at how the heck am I going to get this done and over. So, any shares of it would be amazing because this is at the moment the only thing that I can think of. Unless I can sell a body part.






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#Spoonie Update: #WTF is this week?

This is about April 22nd-28th but everything that's gone on still will melt into this week.

My week I've started dealing with stronger symptoms due to my gallbladder not working. If you can please donate to help me make an appointment as fast as possible. Here. Or use the cash app both work. I am a substitute teacher so I'll no longer have work at the end of June.

We're trying to save up for it but I also have to pay for medicine and my other medical visits. Ugh.

Anyway, that's normal stressing and needing assistance with medical. That's been my life since I was around twenty-three. At least now my problems have a name and a solution for the most part.
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Monday, learned my boyfriend's grandpa is in an induced coma. He went into the ER 16 days ago because of intestine's twisted...but it doesn't look like he's going to get out of there alive. It's hard to fully grasp because before he went in...we were talking with him in the living room??

My Dad broke his foot due to him not securing the scaffolding he was on. My dad is the safety monitor on a job site...he knows 100% more than anyone else what he needs to do before operating things.

So, he's semi-off work sending things back and forth to his job. He works construction so a working foot is needed to continue to work. 

Wednesday I was panicking so intensely that I caused a flare up. I woke Thursday unable to go up to go to my sister's house so she could drop me off at the job fair at 3 PM. My boyfriend said he can do it so long as he doesn't get off work late.

I get to the fair and well, most of the elementary principals were already gone. So, I was able to speak with a few of the principals left and left my name, stating interest at two schools that weren't there.

It went well with the principals I was able to speak with.

My boyfriend had received a phone call from his friend from work at 12:30 AM. So, when we woke up at 5 AM, he sent his friend a text asking him why he was up so late.

He received a text back that his friend had passed away. So, boyfriend called asking what did they mean by that. He thought it was his friend pulling a joke or a typo. But no, his sister answered his phone explaining that he had died on the way to the hospital at 11 PM, Thursday. She tried to call an hour after to let him know but couldn't get a hold of him.

We received this information on the way to work. To listen to his sister talk, the tone in her voice. .. was hollow in autopilot and it hurt to hear. I could not imagine.

So, my boyfriend had to break the news to his job that he had died. His boss didn't believe him. Which is understandable and having to listen to him process the information.

His friend was leaving the job -- he planned on catching a new job and wait for the police academy to open. He's been prepping for years going to night school to become a police officer.

It was a long hard day for me. I've experienced death in my family a lot. But these deaths usually are known to be happening soon due to illness.

The last sudden death was my Sunday school teacher, her husband murdered her around 2010? I think. I'm not sure. I just remember the loud sob coming from the back room from my mom.

3 AM Saturday I began vomiting and didn't stop until 8:30 ish.  Today, my ribs and stomach are hurting. I'm struggling with the basics like breathing or moving properly. I work tomorrow and I have a job interview on Tuesday... I can't afford for health problems to get in the way dammit!

Friday is his funeral and... everything still wow.

#Spoonie Doctor Visit Wed & Fri Woo!

My primary care doctor I can schedule appointments and do a payment arrangement. Unlike the surgery I'm trying to schedule for. I still need help paying for my first appointment with the surgeon.

Since my state was in the middle of a Teacher Walkout it allowed me a lot of time. So, was able to schedule a doctor appointment for my bladder infection. I get one every few months not sure if it's because I'm a teacher and rarely have bathroom breaks or what.

 I meant to talk about my medication with him during this appointment. But we started talking about the teacher walkout and got distracted.

 For over a week I was having painful bladder pain and wasn't sleeping well. I would use an ice pack that would kind of work with the problem. The pain was intense enough that it cut through my sleep medication. I wasn't sleeping without sleep meant pain level increase.

Asked about allergy shots and if they did them. Scheduled for Friday.

Excited for Friday to roll around it is the day we get to see the ultrasound of our soon to be nephew/niece..or nibling if you will. Arrive at the clinic exhausted and sore to find out they didn't know she was scheduled for an appointment today!

Another thing, an ultrasound to see the baby wasn't going to happen, either! Why? She was supposed to have scheduled with another place specific for ultrasounds. But the place that her doctor sent her information to never got back to her. So, she thought it was going to happen with this visit -- they were supposed to have the ultrasound available by Friday at her clinic..but anyway.

She calls the other place to set up an appointment. The woman she called says she doesn't know anything about ultrasounds & would need to research this. She's mad and so is her doctor because they sent all that to that facility a week ago.

But she got to hear the babies heart beat! And, the facility called back with an apology & that they'd be able to get her in May 16th! A month away! So, her appointment didn't go as planned

Midday mom and I went to Wal-Mart so she could get her medication. She was filling almost all of hers so it was going to be an hour until she could get them. Instead, we went shopped then went home. Hopefully, she went and picked them up over the weekend.

My appointment: I remembered to mention my medication! So proud! No distractions!

Takes twenty minutes to see the doctor. Get all my meds. My pharmacy claims that they have nothing indicating that I have script for Vitamin D -- urghghghg so glad I found that out before I went to the doctors. Got that filled and got Plaquenil filled.

Weirdly the plaquenil that I have looks nicer than this pill in the image. Even the generic version that I just got looks nicer than this.

Prescription Vitamin D







But! I did forget to ask about higher the dose of my sleep medication. But all in all I got what I needed medication wise.

Now, Friday came along and it was a nice day. I wanted to wear my pretty red dress that I've only got to wear once.

I am here for an allergy shot. I am excited because allergies are of the devil. To prevent the evil taking over I get an allergy shot once every year ... or when I feel it wearing out.

SO!!! After talking about medication and updating my scripts. Several minutes later the nicest medical asst person comes in. She's all, "It's in the hip!" and I'm dying.

Went from excitement to wanting to magically disappear out of the room.









That morning while getting ready I had put my underwear on inside out. When I told my boyfriend this later he was, "Yeah, I saw that but I thought you knew." ????

Me: I forgot allergy shot in hip wore a dress and my underwear are inside out. So my favorite med asst lady saw me in unfortunate situation.... So need to find a new doctor. Boyfriend: ....

TL;DR 

Went to the doctor. Fixed bladder, medication prescribed due to pharmacy losing script.

Embarrassed due to clothing choices for my Friday doctor visit.

Didn't get to see my nibling in a sonogram because medical person at clinic couldn't get her shit together.




Thanks for reading :)

You Don't Have to if You Don't Want To - Chronic Life

My boyfriend said these words as I struggled to stand up to get dressed. It was Easter morning. His side of the family were all gathered in the front of the house. I was surging through the pain scale where a pain level 10 was no longer accurate.

"You don't have to if you don't want to" was a knife to every part of me that was hurting that morning. Overall, that was every part of me except, weirdly, my elbows.

When I went for the HIDA scan was my last day of manageable pain. After that it was a major flare up where it felt as if my flare up was having a flare up. Yesterday my pain level was down to a 7-8 which was relief.

I sat next to my boyfriend and was "I'm no longer at a suicidal level of pain." he goes, "What? Don't make me have to remove all the guns and knives from this house." I explained that it felt as if death would the best pain reliever because that is how high my pain levels were the past week.

It wasn't that I didn't want to do any of the social things for the holidays. I could not. I could barely hold a thin plastic plate and the fork to eat the food. He put small amounts of food on the plate and it physically felt too heavy.

I ate what I could but I struggled to even walk to the bathroom and back. He's been with me for the most of my pain adventure. So, this sentence stung and it's still bouncing around in my head I can't get it to stop.

By the end of Sunday I told him, "Well, I'm not going to be able to go up to my sisters tomorrow." He seemed surprised about all of this as if he's new to this.

Sometimes I forget that those in my life who don't experience pain every day forget that it does remove the fun things I can do. I worked two days last week and did my exercises like I normally do and my body is not happy.

I am on medication for my RA, muscle spasms and to manage my pain levels. I don't have health insurance so I haven't been able to sit down and talk with my RA doctor to switch my medications. 

I feel very stuck in my health situation at the moment. I don't want to not be able to do the things that I enjoy such as family get together's, holiday celebrations and just doing normal every day things. 

In conclusion, just please pick better word choices when you're frustrated with someone in your life that has physical ailments and it can't be helped. 

HIDA Scan & Other Spoonie Things

What is a HIDA Scan?

What is a Spoonie?

What's *wrong* with you?

FAQ (if you're reading from something other than blogger this goes to my blogger)

I did one of those follow trains on Twitter so I figured I'd link to information. Yesterday I had a 10 AM appointment for the HIDA scan. I set my alarm and get a phone call saying that her 8AM was a no show and if I'd want to come in an hour early. So, did that.

I've had another similar test but for my stomach. I'm fairly certain it was the same exact test but they didn't call it a HIDA scan but was the same thing.. fast after midnight, get injected with a radioactive tracer, camera.

Basically, they inject you with a radioactive tracer then stick you on a flat plastic board then you get placed under a camera thing.

This is the closest I could find to the one I was in yesterday. All the ones I've found before this seem newer and you're not lifted in the air. But you're on a very thin plastic bed thing and raise up and meet the camera.

From Mayo says the extremes are 30 minutes or 4 hour. Average 1-2 hours. I was really hoping some how some way I'd magically be done within 30 minutes. Mine was two hours.

For most of the first hour she had me put my hands behind my head. Except I have RA and was told not to take any pain medication after midnight. So, this extended time with my arms over my head began to hurt.

My movement and wiggling around to try to get comfortable I believe signaled to come over to change up the position. She brought add-ons, trays for me to lay my arms at my side. Ten times more comfortable than above my head but still hurt.

So, for the rest of the adventure I had my hands crammed to my sides. At the end she helped me out of the thin plastic bed-thing which I was grateful. My arms and legs had fallen asleep/gone numb and the movement of mine was limited. Not many people during test help you when it's finished.

I step down cautiously and she goes, "everyone thinks that is a step but you can just walk normally across it." she said that at the beginning, too...but I try over the stupidest things so I make certain I make it over things.

The rest of my day was fine. Today? I woke with bruise-like feeling up and down my arms. My left shoulder is in pain if I extend out my arm above or reach out/forward. My right has pain but less than the left which is a relief.

I had to get the IV in my hand, which is bruised and sore. It's currently fucking painful typing this but whatever. I'll know the results of this test on Monday. That's if my doctor's office actually calls me. 

My boyfriend wanted me to go ride on his motorcycle today. Hooo-boy no thank you. I don't think I'd have been able to sit comfortably even for half a mile.

But the pain medication would have prevented her from seeing my gallbladder on the scan. So, I understand the necessity of not using pain meds..I'm still hurting and ughh.

Hope y'alls weekend is going better.

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