Disability


Well, I got in the tube thing for my pulmonary function test. I will find out what’s causing my shortness of breath at the beginning of January.1 I watched as the chart filled in and the numbers popped up. I assumed that black numbers were normal and red were abnormal. There were quite a few red ones, which isn’t that weird since I have asthma. What was weird was that my breathing got worse after they gave me a nebulizer treatment. They give patients a bronchodilator to see if it improves the breathing, which is the expected result for anyone who takes a bronchodilator. Hell, even being ineffective but not worsening it is an expected result. Paradoxical responses are, well, paradoxical. They aren’t expected because they’re the opposite of what is supposed to happen. It’s kind of like if a mug of pens fell and the pens floated to the ceiling. Okay, well, not really because that might mean that the universe is broken, but it’s freakish. There is one instance where the reaction makes sense: if the test was done with theophylline. It used to work fine for easing my breathing issues, but, as my caffeine allergy worsened, my tolerance threshold for theophylline got worse and worse. Theophylline and caffeine are both types of xanthines. Theophylline doesn’t always cause the allergic angina, but it does cause a headache, paresthesia/buzzing, and some other unpleasantness. Today’s treatment caused all of the non-angina unpleasantness, so I guess that’s what they used. If it is, that was pretty shitty of them. I mean, seriously. It’s like if I told them that I definitely had a penicillin allergy and they injected me with penicillin without telling me what it was.2 And the results could have been just as severe. It only worsened my breathing, caused a headache, and caused neurological symptoms. It could have killed me. When I say it was pretty shitty, I mean it was fucking dangerous as hell. Eventually, I’ll find out the results or my doctor’s office will kill me. Fingers crossed, right? Unless I find out sooner. ↩I have had doctors prescribe penicillin even after I told them I was allergic, but no secret injections. ↩

Who Needs to Breathe?


I have what feels like a sinus infection, which is quite lovely1 and definitely didn’t happen on a week where I need to be at my best.2 It’s not like I have a pulmonary function test in around twelve hours.3 A month ago, I definitely didn’t schedule my road test for my driver license4 for this coming Thursday.5 So it’s not like this is an inconvenience of the grandest kind.6 Yeah, this definitely isn’t pleasant.7 I would have rescheduled my pulmonary function test, but I’m actually hoping that my inability to breathe through my nose8 will be helped during the test. There’s also the hope that the inability to breathe properly in general will be helped by doing this test.9 If I hadn’t waited until last Thursday to get my driver permit, I wouldn’t worry so much about this impacting the road test.10 It still might be okay, unless I’m unable to practice tomorrow. If that happens, it sort of fucks with any plans that I made for driving myself around after the 15th.11  Keep your fingers crossed for me. I’m determined to do this, even if it is the fucking worst idea I’ve ever had.12 It’s not like I can go to the doctor to get something to treat this.13 So I shall suffer in silence.14 Think happy thoughts for me, and maybe my suffering15 won’t last that long.   Not. ↩Oh, it so totally did. ↩Yep. ↩That thing that I put off getting for almost 17 years. ↩Oh, but I did. ↩If you haven’t noticed, this post is dripping with sarcasm–kind of like how my sinuses are dripping with…Sorry for the imagery. ↩Understatement of the year. ↩Not an understatement. ↩I’ve got high hopes… ↩But I thought that giving myself a week in between would give me plenty of time. ↩Dammit. ↩Surely, it can’t be. ↩Thanks, immune system. ↩I’m going to whine a fuck-ton, so you better get used to it. ↩And yours. ↩

That I Shall Never Breathe Again



I was told tonight that the reason that people don’t donate to my GoFundMe is that I’m a douche. My douchiness is an apparent result of my defense of Twitter friend who was being attacked for his lack of tweets after that friend had challenged this other dude over his hostile attitude over a Teen Vogue article that said Trump was gaslighting America and was endangering American democracy. BREAKING: Dude with 20k tweets thinks he’s hot shit for having 20k tweets, so he lashes out at a teen magazine. Seriously, bro? https://t.co/mWtZ69XfTo — Janet Morris (@janersm) December 11, 2016 In response to my tweet, he decided to call me “Super Girl”12 and to follow that up with mocking of my GoFundMe fundraiser. At first, it didn’t seem like he was making fun of me, but it became obvious rather quickly. BREAKING: Dude with 20k tweets responds to 257 Tweeter because no one @ ed him and Super Girl arrives. https://t.co/W8qRSAdVKd — James Brooks (@hannibalsbuffet) December 11, 2016 JUST IN: Super Girl needs help with her house. Go fund her? https://t.co/LGVJp7sC41 — James Brooks (@hannibalsbuffet) December 11, 2016 JUST IN: Super Girl is human. And flawed af. But eager to spread the news of her house needing repairs. More at 6. @janersm pic.twitter.com/iKv6Ywubfu — James Brooks (@hannibalsbuffet) December 11, 2016 He decided that I don’t understand how he feels about Trump, because apparently no one suffers like he does. He decided that I was acting like a child because I was defending my friend. He had nonsensical retorts that only contained insults and attempts at gaslighting. He continued his wrath against the crowdfunding campaign because it upset him that much. Again, attacking people on the Internet while pleasing for their help is counter productive. https://t.co/1kGEm9mKy9 — James Brooks (@hannibalsbuffet) December 11, 2016 Janet, if you want help … this ain’t the way. https://t.co/BBkuXuHRU7 — James Brooks (@hannibalsbuffet) December 11, 2016 What sounds like gas lighting is you interjecting yourself and then liking your gofund me tweets. Tbh. But you do you, boo. https://t.co/Zxco6ba6CB — James Brooks (@hannibalsbuffet) December 11, 2016 And better fund raising platforms, tbh. @janersm — James Brooks (@hannibalsbuffet) December 11, 2016 And he just went to 100% bizarro: Blocked. Auto Insurance scam. https://t.co/aFiddzYlB1 — James Brooks (@hannibalsbuffet) December 11, 2016 In my first tweet, I was snarky, just like he had been to my friend.3 In subsequent responses, I was trying to be understanding about why a middle-aged man might be raging out against a teen magazine for running an article. That was what I was doing as he decided to disparage me and my GoFundMe campaign. When I tried to explain why I was doing the campaign, he just kept acting like an asshole. I would but I’m on a fixed income because I’m disabled, which is why I needed help repairing my house. You know that think you mock me over? https://t.co/IHzu3DrEvC — Janet Morris (@janersm) December 11, 2016 Of course in his performance tweeting, he didn’t tweet things that might make me look like a marginalized individual. It was obvious that his tweets were meant to get him attention or sympathy from his followers. It seemed ridiculous to me that he made the insinuation that any person who wants to raise money so that they can have roof over their head that doesn’t leak or a floor that isn’t the actual foundation of their house has to play this Susie Sunshine character. I’m not allowed to express my opinion or defend my friends because I’m poor & need help. That’s a lovely message to share. Maybe he’s right. Maybe that’s why I’ve literally only raised $20 for the repairs.4 I mean, I know he only said it because he was being bitchy and an asshole, but there’s that little part of me that thinks that maybe he’s right. Maybe if I weren’t me, people would actually help out. I followed all of the advice websites gave for making the campaign successful and it still wasn’t, so maybe it is just me. Maybe I deserve this, but it’s still pretty fucked up that someone tells another person that.5 Why do people suck so much? He doesn’t realize that calling a person a superhero’s name isn’t an insult. ↩He also doesn’t realize that Supergirl is one word. ↩A person who had been following him, which he would have known if he looked at my friend’s bio. ↩The biggest chunk of money came from the selling of Nana’s house. ↩Not quite as fucked up as the two death threats in the last 3 days that I’ve gotten from Trump supporters, but close. ↩

In Case of Extreme Bitchiness (of Another Party)


If you’re looking for a charity to donate to, I’ve included links to the donation pages of the charities listed under each category. Most of these originally were posted as part of my 2016 holiday wishlist. Abuse and Sexual Assault 1in6 National Coalition Against Domestic Violence RAINN Animal Rights ASPCA Antisemitism ADL Capital Punishment National Coalition to Abolish the Death Penalty Civil Liberties ACLU Disability Disability Rights Education and Defense Fund Environment/Science Clinton Foundation EarthJustice GreenPeace NRDC Union of Concerned Scientists Human Rights Human Rights Watch USA for UNHCR Women’s Refugee Commission Islamophobia CAIR Journalism ProPublica RSF LGBTQ Human Rights Campaign Lambda Legal SPLC Trevor Project Poverty Alabama Arise Clinton Foundation Racism Black Lives Matter Mexican American Legal Defense Fund NAACP and its Legal Defense Fund SPLC Reproductive Rights/Feminism Center for Reproductive Rights Clinton Foundation EMILY’s List Guttmacher NARAL National Abortion Federation National Organization for Women Planned Parenthood She Should Run Women’s Refugee Commission If you have any suggestions for this list, please let me know.

Charitable Shortcuts



1
This is a meme that I participate in every year on LiveJournal. Even if you get nothing, it’s still a fun meme because it allows us to be kids again and make Christmas lists. Let’s face it, that kind of dreaming and hope is fun. So here’s my wishlist this year. If you want to make one, leave me a link and I’ll post it here. THE ORIGINAL MEME: STEP ONE Make a post (public, friends-locked, filtered… whatever you’re comfortable with) to your LJ. The post should contain your list of ten holiday wishes. The wishes can be anything at all, from simple and fandom-related (“I’d love a Snape/Hermione icon that’s just for me”) to medium (“I wish for _____ on DVD”) to really big (“All I want for Christmas is a new car/computer/house/TV”). The important thing is to make sure these wishes are things you really, truly want. If you wish for real life things (not fics or icons), make sure you include some sort of contact info in your post, whether it’s your address or just your email address where Santa (or one of his elves) can get in touch with you. Your home address is not required! Make sure you post some version of these guidelines in your LJ so that the holiday joy will spread. STEP TWO Surf around your friends list (or friendsfriends, or just random journals) to see who has posted their list. And now, here’s the important part… You needn’t spend money on these wishes unless you want to. The point isn’t to put people out, it’s to provide everyone a chance to be someone else’s holiday elf – to spread the joy. Gifts can be made anonymously or not – it’s your call. There are no guarantees with this project, and no strings attached. Just… wish, and it might come true. Give and you might receive. You’ll have the joy of knowing you made someone’s holiday special. THE LIST I have listed more than 10 things. My list this year is a little different from past ones. I have always requested chocolate, but I developed an allergy to peanuts this last year, so I thought it might not be the best idea to request food anymore. I know it’s weird for me to mention this here. 1. Donate to any of these organizations: 1in6 ACLU, ADL, Alabama Arise, ASPCA, Black Lives Matter, CAIR, Center for Reproductive Rights, Disability Rights Education and Defense Fund, EarthJustice, EMILY’s List, GreenPeace, Guttmacher, Human Rights Campaign, Human Rights Watch, Lambda Legal, Mexican American Legal Defense Fund, NAACP and its Legal Defense Fund, NARAL, National Abortion Federation, National Coalition to Abolish the Death Penalty, National Coalition Against Domestic Violence, National Organization for Women, NRDC, Planned Parenthood, ProPublica, RAINN, RSF, She Should Run, SPLC, Trevor Project, Union of Concerned Scientists, USA for UNHCR, Women’s Refugee Commission I think that, given the current political/social climate, they’re going to need all of the support they can get. If you want to donate in your name, that’s fine. If you want to donate in my name, that’s fine. 2. A plush-style throw/blanket. I don’t really have any specific color or fandom requests on this.1 3. A subscription to a service like OwlCrate, InfinityCrate, or LootCrate. I have friends who subscribe to these services, and I’m always envious of them. 4. A Barkbox or LootCrate Pet subscription for Amy Pond (my dachshund/boss) because she’s my bestie. She’s not a miniature; she’s about 20 pounds. 5. Funko products featuring any of my fandoms. I have some Pop!, mugs, and a plush, and I think all of their stuff is awesome, so I’m not going to be picky about this. 6. Shot glasses. I don’t drink, I just collect them. 7. Tea pots. I also collect these. 8. Coffee Mugs. Yep, these too. I do drink coffee, though. 9. Makeup. Specifically NYX lip gloss. I’ve run out of some and broken the containers of others. I like all sorts of colors, but the browns don’t look very good on me. 10. Accessories. Hats, socks, scarves, headbands, purses, barettes, necklaces, bracelets. I absolutely need a wallet. Belts if they’re made for plus-size women. 11. Crafting and sewing stuff. Knitting, crocheting, embroidery, quilting, sewing, jewelry making stuff, adult coloring books, colored pencils, markers, beads, fabric, safety pins. 12. Obligatory teddy bear/stuffed animal request. 13. Paypal/Square donations (email for that is personal[dot]janet[at]fuzzypinkslippers[dot]com) or donations to my GoFundMe, which will help for repairs needed on my house. There’s also my Patreon, where I’m always looking for patrons. 14. Gift cards from iTunes, Lane Bryant, Starbucks, Target, Torrid, & Zenni. 15. Anything from Amazon.com wishlist. It’s fine if it’s something that’s used or that you find somewhere else. Fandoms 2 Broke Girls, Angel/Buffy the Vampire Slayer, Arrowverse, Auburn, The Big Bang Theory, The Blacklist, Charmed, Dakota Johnson, Disney, Doctor Who, Friends, Game of Thrones, Glee, Gilmore Girls, Harry Potter (esp. “my house” Hufflepuff), Hello Kitty, How to Get Away with Murder, Hunger Games, iZombie, Jamie Dornan, Jane the Virgin, Kate Winslet, Leonardo DiCaprio, Marvel, Once Upon a Time, Orphan Black, Outlander, Peanuts, Pretty Little Liars, Project Runway, Scream Queens, Star Trek, Star Wars, Stranger Things, Supernatural, Taylor Swift, True Blood, Twilight, UNC, Westworld Interests Crafts, fashion, reading, listening to music, singing, walking, cooking, hair, makeup, politics (progressive/liberal/left-wing), feminism, green living, cute stuff, photography Favorite colors pink, purple, baby blue, silver, red Contact If you need my address, email me at janet.main@fuzzypinkslippers.com There are two at Walmart that I adore. One is a stock image of London that’s black & white except for a red phone box. The other is a stock picture of Paris. But I would be just as happy with a solid color one. ↩

Holiday Wishlist Meme 2016


Today was my last daily injection of Vitamin B-12. Now I’m going to weekly injections. Eight weeks from tonight, I’ll be back on monthly injections. So far I can’t tell that the shots have done anything. I only know that every time I give myself a shot, I feel more exhausted. It’s a paradoxical effect, but it’s one I’ve always had with B-12. My breathing is still crappy. My heart rate is through the roof. My dizziness and tendency toward disorientation has gotten worse. I was dizzy for about 3 hours last night after hearing a cowbell effect on a Mississippi State sports story; I wasn’t dizzy before the effect played. Sounds have often thrown me off a bit, but never quite that bad. I still have a couple of weeks before I’m supposed to go to the pulmonologist. Keep your fingers crossed that it won’t get worse. Speaking of appointments, tomorrow is dad’s appointment for the neurologist. Since his MRI, EEG, Doppler, and standard memory tests all came back normal, he’s convinced that he’s not got dementia. He thinks it is all just regular age-related memory loss. I’m afraid the doctor will feed into that. I don’t think he’s told him how dizzy he gets or about his headaches. I don’t know if he’s told him just how bad his memory loss has been. I don’t know if he’s told him how angry he’s gotten. I know that there is something wrong with him and I don’t know what it is. And I have this horrible feeling that it’s only going to get worse.  

A Bruising Hiatus



1
If you’ve been following me on Twitter, you know that I am currently rather pissed at the Huntsville CBS affiliate, WHNT, for their planned special tonight called the Dark Side of All Hallows’ Eve. In the ads for their story talk about Huntsville’s police department once having a special occult crime division. The ads also feature images of Jeffrey Franklin and comments about the crimes he committed on March 10, 1998. Jeffrey killed his parents before trying to kill three of his four siblings on that night. He also attacked the best friend of his 14-year old sister. I can tell you a lot about the night. More than a lot of people can. His sister was my friend. His sister’s friend was also my friend and on Yearbook staff with me; she talked about that night in class. My mom was the person who carried the medical records of his sister to the hospital. She stayed there until my friend was in the ICU. We went back to the hospital on a regular basis until it was time for them to leave town. From the start, Jeffrey was painted as evil by the media. Even when the evidence came to light that he had 10 times the normal dose of Ritalin in his blood twelve days after the crime.1 Even when people started mentioning that he was mentally ill. Even when the state of Alabama thought he was mentally incompetent from 1999 until 2001, and even though the state of Alabama has had him in the mental healthcare unit of the prison since his sentencing began, instead of in general population, he has been portrayed as this supernatural killer. That kind of stigmatizing attitude is damaging to the whole community and it needs to stop. Personally, I’m tired of reliving that night. It’s been almost twenty years and local news outlets are still pushing it. They keep trying to make a buck off of the suffering of my friend’s family. They keep trying to profit on the suffering of the people I grew up with, of the choir that we were in together, of me, of my mom. This has to stop at some point. I know that the story was shocking and gruesome and that it sticks with people. It’s stuck with me, too. At a certain point, enough is enough. I wish he hadn’t made the choices he did that night. I wish that a lot of things were different about that whole situation. But forcing us to go through it over and over is cruel. He had been in jail since the night it occurred. ↩

And then I fell down yelling, “Make it go away!”


After I nearly fainted after getting out of the pool, I quit exercising. It’s not a permanent thing. I will start back after I get cleared by my doctor. That will probably be after an infusion or two. Between the wooziness that day and the constant shortness of breath, I just can’t justify the risk right now. And somehow I feel like I’m a failure for not being physically able to do this one little thing. What’s that about? I know my body has limitations, but I don’t like what those limitations mean. I don’t like that my body seems to be fragile compared to most. I know, I know. Being disabled means that there are things that are more challenging to me than to able-bodied people, but knowing that doesn’t mean it’s any easier to deal with.

I Haven’t Been Exercising Lately



My veins suck. They have all kinds of structural issues and when combined with my chronic dehydration and other chronic health issues, they don’t like to play well with needles. I don’t expect blood draws to go smoothly. I’ve learned over the years that most phlebotomists (and some other medical professionals) aren’t going to believe me about just how bad they are. I’ve also learned that if they stay calm, it takes a shorter time, so instead of chewing them out about what’s going on, I smile and reassure them. But if I could tell them a few things, I would tell them: Stop hitting me. You may classify it as tapping or slapping, but it’s painful and it won’t help you. Slapping does not make it easier to find the veins. It doesn’t make them pop up. For me, it seems to make them “hide” because the stimuli is so painful; also, I have a connective tissue condition called Ehlers-Danlos Syndrome, so I’m prone to bruising, which make it even harder to spot the veins. The tapping/slapping/hitting also can damage the blood that you’re attempting to draw and mess with the results. I know I’m in my thirties, but my veins still roll. Every time I specifically tell one that my veins roll, they say that I’m too young for that to happen. Veins rolling is mainly associated with the elderly, but it is also associated with people who have connective tissue disorders. This is why you don’t continue a saline drip into an already blown vein. (Twitter) If I tell you my vein is blowing, then you need to listen to me. I know my veins better than anyone else, and I should since I’ve had them my whole life. I know what a blowing vein feels like, and I know what it feels like once one has already blown. For me, if I get a really cold burning sensation right where the needle is, I know that that needle better get out of my arm. I once told a nurse that the vein was blowing and she ignored me. She continued to work with the vein and even tried flushing it to start an IV. If you’ve never experienced the joy of saline flushing through an infiltrated (blown) vein, then consider yourself to be extremely lucky. I already drank the water. I am aware that being dehydrated impacts whether or not your veins are visible. Before scheduled lab tests, I make sure to drink even more water than I normally do. It doesn’t help. Stop being cocky and trust your patient. I know that some of these people are really good at their jobs, but the cockier they are the more likely they are to have problems finding my veins. And I’ve talked to other people with bad veins who have noticed this to be a common trait. Like I mentioned with blown veins, I know my veins better than anyone else. If I tell you that my veins suck, then I’m probably telling the truth. Even if the patient doesn’t actually have bad veins, the phlebotomist needs to behave like the patient does. What is the worst that will happen? Be confident. Yes, I want people who aren’t cocky, but if you’re nervous, you will miss the vein. Just be calm and respectful. Forget the gadgets. The only thing that was ever learned about my veins with a vein-finder was that they had more branches than most…and that they have are super-deep and really small. Using heating packs might help a little, but a warm towel or blanket works just as well. Oddly, a blood pressure cuff works better than a tourniquet. Tourniquets should die a painful death. Okay, back to the connective tissue disorder and its complications. If you’ve watched many episodes Law and Order or CSI:, then you may have heard of petechiae. It happens when the capillaries (really little blood vessels) explode and spew their bloody guts into the tissue that makes up the skin. Petechiae isn’t painful, but tourniquets are. (Blood pressure cuffs also cause petechiae and pain, but veins pop up quicker with them than with tourniquets.) Ask me about my allergies before you stick me. I know that it’s the patient’s responsibility to tell the phlebotomist and I try to get across that medical adhesive and latex are a no-go, but if they aren’t listening or they forget, it helps if they ask again just to make sure. Again, this is one of those what’s the worst that will happen things. Prepare your needle and equipment before you go hunting for a vein. A lot of people like to hunt for my vein before they have the needle ready to go in, which means they find one, walk away, grab their stuff, wipe me down, and then go to stick me. Veins that roll are not veins that you can just walk away from and expect to still be there when you get back. My veins have other plans. Stop digging. It hurts and it typically leads to a nerve being hit. That is pretty unpleasant. And by “pretty unpleasant” I mean that I would rather walk barefoot for 5 minutes down in Antarctica than have a needle hit a nerve. Sharp pointy things do not play well with nerves. Oh, so now you think they’re too hard to find? No shit, Sherlock. The exclamation of “these are hard to find” is always one of those things that makes me want to roll my eyes. I know that some people might lie about the difficulty, but I don’t. I don’t need your affirmation that they are hard to find. I know that they are. I’m the one who has been stuck in the palm of the hand and the top of the foot when safer/better areas were not found. I’m the one who has had to wait for the charge nurse to come do the stick or for the anesthesiologist […]

Stop Hitting Me


I was going to call the hematologist today & chickened out. I think I may be putting it off because I’m afraid of moving up the infusions. They actually do kinda scare me—well, the killer headache aspect. But I know I need to go through with them.  I also need to get my hip checked out, which I’ve been saying for months. I don’t know if that would involve going to just the family doctor or the family doctor plus physical therapy and/or an orthopedist. I don’t even know if I would be seeing the same orthopedist. And I don’t know if anything could really be done. It’s either a subluxation or tendinitis. Treatment for either would probably suck, and, until I get the anemia situation under control, I don’t really have the energy to deal with it.  Dad got a letter from the neurologist saying his MRI was normal. To him, that means nothing is wrong and this is all normal age-related stuff.1 But he doesn’t understand that a person can have a 100% normal MRI & still have dementia—even though he and I have gone over that. This week. I don’t know if he has forgotten it or is in denial. I know he doesn’t want the diagnosis to be real, none of us do, but the family doctor and the psychiatrist have both said all signs point to dementia. But we have to accept it because there is nothing that can change that fact.  And since it’s October I’ve started worrying about other things. Ridiculous things. Like that now that Nana is no longer living on her own, and is in the nursing home, do my parents & I have a place to go on Thanksgiving & Christmas? Or do those become just another day for us. I mean technically Christmas has been that way for years—when you don’t have presents & don’t put up decorations, holidays kinda lose their magic. But I don’t know what will happen this year, if my aunt will host, if we’re invited if she does, if we’re going to the nursing home that day, if I try to get everyone in my house to stay awake long enough to watch parades or anything. I just don’t know.  And it’s stupid that I cry about that a lot lately. But I just want one or two good, non-stressful days. I want life to make some kind of sense again.  I just feel lost.  His EEG and Doppler were yesterday and may take a few more days to get results. ↩

Chicken Janet