BreatheDucky - Stories from a Spoonie

Hi, I'm Ducky. I'm 29. This is my health related blog. I'm a heart & chronic pain patient. I'm all about raising awareness for Congenital Heart Defects (CHD), Cystic Fibrosis (CF) & Organ Donation

[breatheducky]

A few years ago I posted about my friend Amber who needed funds to be listed for a double lung transplant. She managed to fight and fight hard to get her health stable enough where she didnt need one anymore. Unfortunately as someone with Cystic Fibrosis, a lung transplant is inevitable. She is now back to the point of needing one. As of yesterday, she is officially on the list for new lungs! Congrats Amber. I LOVE YOU. <3

[breatheducky]

Time for some (more) brutal honesty. (I did this last night on FB, but this is a more detailed update) My illnesses are invisible. Sometimes, even to me. Sometimes, I shove my knowledge of their existence deep into the back of my brain and forget about them. I get used to functioning at a level that an abled person would never even dream of. Some might think it grounds for hospitalization. On a good day my pain levels never stay below a five, shortness of breath, dizziness, arrhythmias, neck and back stiffness, wobbly legs, daily nausea, not being able to tolerate heat or cold, and being unable to hold things because my nerves are stupid. To name a few. Sometimes I remember: HEY, THIS ISN'T NORMAL. Just because I have adjusted, doesnt make it suck any less. Still, every once in a while, I'm knocked on my ass with something like what I'm dealing with now. A massive flare. I've been having SEVERE symptoms for the past 3 weeks. Beyond even MY "normal". Recently: In addition to my regular list of symptoms I've also added: Increased arrhythmias, constantly feeling like I can't catch my breath, and low o2 episodes to go with it. I've had fevers, ranging from low grade 99.9, through 102.2. Joint and body pain are at an all time high, I have had bad flares of both endometriosis and PCOS. I have been doubled over in pain daily. I can NEVER get enough sleep, I'm passing out from exhaustion and arrhythmias and even pain. I've aspirated a few times. I fall a lot. My temperature intolerance is way worse. I'm either shivering or sweating, or sometimes both at the same time. I throw up regularly. I'm randomly shaking, twitching and spasming. I am disoriented and cant focus on anything. I am miserable. I have to keep reminding myself that it isn't forever. At least I hope it isn't. When I feel like this, it feels like forever. I'm so grateful to have my amazing boyfriend who helps out & comforts me and my amazing mom who always makes me feel better. Anyway, I'm not trying to be rude, I don't mean to ignore people. I'm just trying to do everything I can to feel better. To get back to my baseline, and to live my life. I love you all, thanks for the support. https://www.instagram.com/p/Bs-3lxJH509/?utm_source=ig_tumblr_share&igshid=vi86gpkyd6vs

[breatheducky]

I feel like giving up sometimes.

My body hates me. I cant go 24hrs without falling or passing out. I'm dependent on other people to get things done. My rollator arrives next week and while I REALLY dont want one...it cant come soon enough. I argued over it for weeks because I didn't want to admit I needed the help. But it's at the point now where I cant leave the house on my own because standing is a problem. My legs give out for no reason. Or even worse, I go into arrhythmias and pass out. I'm having issues with my o2 sats overnight and I'm just tired all the time. I hate feeling like a burden and an inconvenience. All. The. Time.

I'm just fed up and ex and I dont want to do this anymore.

[breatheducky]

Update

So yeah. Life is okay. Ish.

As of several months ago, my GI system has been having temper tantrums. Long story short, I lost over 10lbs (not a good thing) and I'm now on a paleo diet. I'm not super strict about it, I'll still have a few bites of rice/pasta/yogurt. But the majority of my diet is fruits, veggies, meats and nuts. I cut out processed foods almost entirely. And I have to admit, it IS helping. But I'm STILL losing weight. Which makes me really uncomfortable. I was advised to snack at least once an hour, but I honestly cant afford to do that.

Anyway, I'm currently living in Kentucky with the boyfriend and my doodlebug, that's pretty awesome.

That's about it.

[breatheducky]

I’m gonna take a moment to talk about this guy right here. He is one of my best friends, and now, my boyfriend. We’ve known each other for about 8yrs and just recently realized that we both wanted more. Well, we want everything. I can talk to him about anything and he’s always there. He isn’t scared away by my health problems. A few nights ago I was sick and in pain and sleeping on the floor (helps my back) what did he do? Aside from literally everything he could to help? He slept on the floor with me. He makes me feel beautiful, when I'm feeling gross. And yeah. He’s pretty damn awesome.

[breatheducky]

[breatheducky]

Tw v word, So hey, it’s been a long time. I feel like a lot has happened but since I can’t really remember we’ll skip that.

Anyway, I’ve been on Cymbalta for 12+ years. I’m now weaning off it. I have been for months. I was not prepared for such a lengthy withdrawl process since I weaned properly. And yet, I’m having literally every side effect mentioned. It’s been 8 days since I officially stopped it and it’s been literal hell. I’ve passed out from heat exhaustion induced by withdrawls. I’m extremely light and sound sensitive. My mood swings are off the chart. I can literally laugh and cry at the same time. I can’t read or watch the news without sobbing. I’m constantly sweating and shivering at the same time. It’s not normal shivering either, it turns in to full body spasms. It’s painful and effects my breathing. I haven’t been able to eat much of anything in 4 days because nothing stays down. I take a Zofran, choke down a piece of toast and a few sips of Ensure and take my 3 pills that I CANNOT skip, everything else has taken a side line. I did have to skip required meds twice because I just couldn’t keep anything down. I was puking straight stomach acid. The headaches are beyond debilitating and nothing helps them. I’m miserable. I want it to be over. I hope it’s worth it in the end!

[breatheducky]

Everything you’ve ever wanted to know about disability.

Let's talk about Disability (SSI/SSDI)

The general population assumes many things about it.  They assume you're in a wheelchair, for starters.  They assume it's as simple as signing a few forms and POOF you have income.  Most of all, the assume that if you get disability, you're set.  All of these assumptions are wrong.  Very, very wrong.

Many people on disability have an Invisible illness.  Meaning they're not permanently in a wheelchair, although they may use one from time to time.  Disabilities can be physical or mental and are different for every individual.  

Applying for disability takes a long, long time!  Weeks of paperwork, phone calls and appointments.  Followed by months of waiting.  Then after all of that, you will most likely be denied.  Almost everyone is denied on their first application.  So then you start the process over in an appeal.  Months later, you may be denied again.  This is when you have to bring in an attorney of disability advocate.  You may even have to go to court.  All so a bunch of strangers can decide if you're really "sick enough".

Disability income is the worst of it all.  The general public likes to say that people on disability are "milking the system".  That we're just using the government's dime to go on lavish vacations.  We really don't "need" it, we just "want free money".  Really?  Let me explain something to you.  When I was able to work full time, I made $1,400/month.  On disability I receive $700/month.  I lived in Northern New Jersey.  A bare-bones studio apartment in a dangerous neighborhood went for about $900/month, maybe $800/month if you got lucky.  So $700/month income for a $900/month, seedy apartment?  That math doesn't add up.  That doesn't even include, food, gas, electricity, medications, copays, internet, phone service....etc..  Well, okay, I guess I'll just die?

I am incredibly fortunate to have my family and to be able to stay on my mother's health plan.  Without them, I'd be homeless, or dead.  I will be forever thankful for that.  

My advice to anyone applying:

Do not be discouraged if you get denied the first time. Especially if you're young.

Make sure you don't leave a single thing out when submitting your application.

If you get denied, get an advocate or attorney before filing your appeal.

Have a support system in place.

I also want to talk about the judgement people on disability receive and the hardships we face.

A lot of people who know me often wonder why I'm on disability.  They know I go to the gym and exercise.  So why am I on disability?  This may apply to all of you as well.

First and foremost, it's honestly, none of anyone's business but my own.  That said, I'll explain a bit.  

Yes, I go to the gym.  Yes, I can exercise in a controlled environment.  I need to, or I'll become even sicker.  But here's the thing, I am always able to stop in those situations.  I cannot stand for long periods (more than 10 minuets at a time), I cannot walk in environments above 73 degrees for more than 15 minuets, I cannot sit in one position for more than an hour or two at most and I cannot lift more than 5 pounds.  I cannot handle social situations well, I cannot handle excessive stimulation (lights, sounds) and I cannot grip things well.  Now, say I managed to get a job despite all of that.  I still attend physical therapy 3 days a week, I still have multiple appointments throughout the week, I will still have to call out frequently when I have bad pain day or catch something (and I won't know when that will be until it happens) and I will become overwhelmed and break down.  These are things most employers won't tolerate.  You may say, "well you can't get fired for medical things", and officially, you'd be right.  But an employer will just claim you're being fired for another reason.  So yes, there are some days where I'd be able to work, but I don't know when they'll be, so I cannot schedule ahead.  

Being disabled does not mean spending all day, everyday, in bed.  It means you're unable to hold down a job, long-term.

Other hardships we face are more personal.  Most people on disability cannot get married or we'll lose our income.  Most of us will never be able to own our own home.  Many of us feel like a burden to our families.  Many of us have more doctors than friends.  Most of us want to work!  Some of us used to work and miss our jobs terribly.  Most of us do contribute to society.  All of us deserve respect, but we rarely get it.

[breatheducky]

Thanks Publix

Pain is not always invisible, you just have to know what to look for.

Today at the grocery store and employee came up to me and said "are you okay? You look really tired, or sick?"

I said "oh, yes, I'm okay. I just have a cyst" I left out the fact that it's currently rupturing.

She immediately understood, turns out her sister also has PCOS. She then proceeded to help me put things in the car.

Thank you, nice person.

[breatheducky]

I don't have a bedside table here, so I have a bedside pouch. It holds sooooo much. Currently it has: My Inhaler, 3 pill bottles, Lidocaine cream, Remote, A pen, Colored pencils, My journal/coloring book, Laptop and a 28oz waterbottle And there's still 5 empty pockets!!!!

[breatheducky]

Ceramics

Over the past few days I've:

Painted, glazed, cleaned glaze, swept, mopped, filed, loaded the kiln, unloaded the kiln, gone to the storage unit, carried boxes, stocked shelves, photographed, answered phones, done the register, broken down boxes, gone to the recycling center and helped at a party with 17 screaming 5 & 6yr olds.

My back, neck and shoulders are at a constant 7-8 on the pain scale, my legs are swollen and I'm exhausted.

Yes, I still want to open my own studio.

[breatheducky]

From forever ago when @saltyameb was at my house and we surprised my mom.

[breatheducky]

Totally stressing!!

My appointment went well, until I was getting checked out and 2 doctors (one of whom didn't even talk to me) starting trying to change my medication regimen. As well as trying to force me onto lyrica. They kept saying "we think there are better options for you" and "what about your quality of life?"

SHUT UP! You've known me for an hour, it took me 10 years to get on a pain management plan that works for me. I'm not about to change it because you're not happy. As far as my quality of life?... it's acceptable.

When I'm not in a pain flare, I'm almost "normal".

She also filled out a form for me to get back into my PT and said she sent in my refills of the meds she could fill. (More on that later)

Well, I went to the pharmacy. Nope.

Went to the PT place, to find out the doc didn't finish the paperwork. I'm also getting frustrated that it's impossible to find a place that does everything (PT, massage, chiropractic, acu, cupping, decompression...) under one roof, like at home in NJ.

As far as the meds she "cant" fill.

I need to find a shrink. FAST. I'm almost out of Ritalin. And speaking of Ritalin, pretty much no doc will prescribe it here. I've been on it for like 20yrs. I can't just stop it. I also need my Cymbalta and Ativan filled.

Sighhh. Can I come back to NJ now please? I miss my ceramics, I miss my docs, my pharmacy, my friends and my spine clinic!!

*sobs*

[breatheducky]

Someone please come get me. I don't want to live like this. I can't do this. I want to go HOME. I don't want this. I can't handle it. It's just not fair.

[breatheducky]

That nerve damage feel when you have severely painful pins and needles in both legs for literally no reason whatsoever.

That's fine, it's not 2am and I'm not trying to sleep.

[breatheducky]

Insomnia

I am a regular sleeper. I sleep from roughly 11pm until 7 or 8am. But the anxiety related insomnia is out of control. I have been sleeping an average of 2-4hrs per night. It's gotten so bad I'm falling and seeing things. I don't know what else to do. I've taken literally everything I have. I give up. :'(

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in defense of the “fake” service dogs

there’s a lot of posts on here and other social media about fake service dogs, how to spot them and what not, and it pisses me off.

when you see a service dog, IGNORE THEM. don’t scrutinize, try to figure out if they’re “real” or anything of the like. turn your head away and act like it’s not there. because your staring is still RUDE no matter your goal.

and if, by some chance they do something outside of service dog etiquette that does NOT make them fake. you can’t know the tasks they are needed for by looking at them, so DON’T judge.

“but the handler is letting people pet it!!” maybe it’s an allergen detection dog and it doesn’t affect their job to let people pet them outside of meals. again, you can’t know by looking at them, so IGNORE IT. you don’t get to decide how other teams operate.

a lot of service dog etiquette is about making the dog invisible, and as unobtrusive as possible. that’s all well and good, but let me make this very clear: disabled people do not need to take up as little space as an able person to be allowed in public. service dog doesn’t have a perfect heel position?? handler still deserves to walk through stores. service dog doesn’t tuck properly?? handler still deserves to sit. just as oxygen tanks, crutches, or any other accommodation can take up space, so can a service dog.

and i’d like to bring up the legal definition of a service dog((in the us)): Under the ADA, a service animal is defined as a dog that has been individually trained to do work or perform tasks for an individual with a disability. The task(s) performed by the dog must be directly related to the person’s disability. The ADA requires the animal to be under the control of the handler.  This can occur using a harness, leash, or other tether.  However, in cases where either the handler is unable to hold a tether because of a disability or its use would interfere with the service animal’s safe, effective performance of work or tasks, the service animal must be under the handler’s control by some other means, such as voice control. The animal must be housebroken. The ADA does not require covered entities to provide for the care or supervision of a service animal, including cleaning up after the animal. The animal should be vaccinated in accordance with state and local laws.

that’s it. as long as a service dog hits all these, the handler has the legal right to be in public with it.

dogs that are not task trained, are out of control or otherwise outside of the definition are not allowed in public, but it’s the responsibility of the establishment to remove them, not yours. tell an employee if you’re concerned, but do not take the situation into your own hands. there’s a time and place for sd education, and the middle of walmart sure as hell isn’t it.

is it frustrating dealing with the general public and their lack of respect for your service dog?? absolutely. but don’t blame it on other teams. blaming disabled people for ableism helps no one.

above all else, ignore service dogs. please.