Disability


A couple of weeks ago, I had to see my rheumatologist. I was past due for my annual visit where he would normally tell me how I was a waste of time for him. He didn’t say that this time. Instead, he was focused on my lab results from last year.  These were results that had “positive”1 results for scleroderma-70, ANA, and SSA-Ro, or as the rheumatologist called them, “the lupus test.” No, I don’t have lupus…yet. He said I may never develop it or several other autoimmune diseases. He did say that I definitely have Sjögren’s syndrome. It’s not the first time he has said that, but it has been a while since he last diagnosed me with that.  Part of me knows not to trust that that’s the diagnosis, since he’s changed his mind before, but it’s still kinda scary. When you’re the grandchild of someone who died from complications of a disease, it’s hard to deal with getting that diagnosis. Mamama had 2 children, 3 grandchildren, and 4 great grandchildren, but I’m the one who drew the short straw in getting this problem. I want to ask why, and I want to scream and say it isn’t fair, but I don’t want another relative to have it. I don’t want them to suffer, but I feel selfish because I don’t want to have it either.  I want to cry.  I want to scream.  I want to know why I’m the one who gets the potentially fatal diseases.  Does being angry & sad make me a bad person? Does it mean I’m too whiny? Do I have a right to be upset? Any result that indicates someone could have a life-threatening or life-changing disease should not be considered positive. ↩

Eyes So Dry


This Thursday was my first day of post-op physical therapy. So far there’s not much I’m allowed to do. I’m not allowed to bend past 90°. I’m not allowed turn my leg out to the side for long. I physically can’t do straight leg lifts with my left leg yet.1 The therapist was a bit exasperated because I’m not allowed to do most of the early exercises in the hip & knee program. She literally had to rip the first page of exercises off because all six are not safe for me to do yet. She’s having to do most of my PT for me; moving my leg around to stretch the muscles in a way that shouldn’t injure me.2 It’s weird.  The program that my orthopedist wants me to go through is a six month rehab meant for athletes. That’s kind of funny because he told me at my first appointment that he thought my issue was due to not being active. The labral tear made it obvious that I’m not the stereotypical lazy fat chick.  The tendon that was released was the one that helps the body do those lifts. ↩I worry that she doesn’t seem to understand what Ehlers-Danlos is and why my “amazing” flexibility in some joints is not a good thing. ↩

A New Kind of Hipster



Alive and apparently allergic to morphine #selfie. I was given some post-op and, as with most other opioids in its class, had a reaction. This time it wasn’t just dizziness & chest pain from bronchospasm; there were also hives. I’ve taken two doses of Benadryl, including some at the Surgery Center, and albuterol. Still have some welts & trouble breathing. As for my hand/wrist, it hurts like an enculé. #wristsurgery #handsurgery #dequervainstenosynovitis #dequervain #dequervains #surgery #pain #wristpain #handpain #ginger #redhead #redhair #morphine #allergies #asthma #huntsvilleal #huntsville #alabama A post shared by Janet Morris (@msjanersm) on May 30, 2017 at 11:03am PDT On May 30th, I had surgery for De Quervain’s Tenosynovitis. The orthopedist went in and snipped the tendon sheath to relieve the pressure & swelling in an injury caused by my father during an argument over a leaking air conditioner last summer. The surgery went well, but there was a bit of recovery room drama. After a shot of morphine, I quickly developed hives. That led to a dose of Benadryl, which was apparently a higher one than is usually needed at the Surgery Center for that sort of reaction. I was given a prescription from my orthopedist for Tylenol 3 and an ice pack and sent home within an hour after the surgery. That led to a little more drama. Tylenol 3 also led to hives, as well as overly talkative and feisty behavior. So after more Benadryl, I realized I needed to recover without pain medication. The dressing is off. It doesn’t look too terribly bad. It feels worse than it looks. Now, I get to put smaller bandages on it. Fun. #dequervainstenosynovitis #dequervain #dequervains #tendinitis #wristsurgery #thumbsurgery A post shared by Janet Morris (@msjanersm) on Jun 1, 2017 at 10:13am PDT Besides using my hand too much and occasionally putting too much weight on my hand, my recovery went rather well. The bruises faded quickly and I didn’t have as much trouble with my incision this time as I did for my trigger thumb surgery in 2014. Slowly getting better. I’ve got another week before the stitches come out. #wristsurgery #dequervainstenosynovitis #dequervain #handsurgery #spoonie A post shared by Janet Morris (@msjanersm) on Jun 6, 2017 at 4:13pm PDT Last week the stitches came out and my scar is very tiny. I swear my orthopedist could be a plastic surgeon. My mom and I have talked about that a few times. The incision is healing rather well. #wristsurgery #handsurgery #dequervain #dequervains #tendinitis #tendonitis A post shared by Janet Morris (@msjanersm) on Jun 14, 2017 at 6:53pm PDT I’ve gotten back to driving since then, which isn’t very painful. Cooking, especially flipping, stirring, and breaking up ground beef, hurts like hell, but I try to keep going. The nurse practitioner said I’ll have pain & swelling for up to six months, so I guess that I just have to keep on trying until it stops giving me trouble. Pain is hard to work against. My shot for my hip is scheduled for June 26th and I’ll have to undergo general anesthesia. If my hip feels better after the shot, the orthopedist said he’ll be doing arthroscopic surgery on it. If it doesn’t, then he says the problem is not in my hip—he never listened when I told him my hip subluxates, so he doesn’t understand that I know my hip issue is a hip issue. I don’t want surgery, but I’d like to have a doctor who would listen when I talk. Maybe that’s expecting too much. I hope any fathers out there are having a Happy Father’s Day. I get the feeling that this holiday is going to always be extra depressing after my dad’s dementia has stripped him of his memories of being a dad and of being himself. Some days it seems like that outcome is approaching more quickly than others. I already feel like he’s sort of a stranger to me & that he’s not exactly someone I can ever feel safe around. I definitely hold back around him now. I can’t really be myself anymore, so this disease isn’t just making my dad “not my dad”, it’s morphing me into someone else. Someone who is even more quiet, scared, and sad than I was before…if that’s possible.

I Survived, So Does That Make Me a Survivor?


1
Well, that was fun. The entry posted before I had written anything. Oops. I guess that’s what happens when you write a blog entry at 2:30 AM.  Let’s see…what’s been going on lately?  I’ve completed 4 weeks of physical therapy. That’s all that will officially be done until after my next orthopedist visit. I’m supposed to work on weights & stuff at the Wellness Center. At my evaluation on Friday, my left hip had strengthened, but my right hip & my right knee had weakened.12 I also learned that my ankles are definitely weak.34 My left hip still has bursitis & weakness in the piriformis, and it’s still showing that there’s something wrong in the joint itself when they do the torturous impingement/labral tear test. And it just keeps on hurting & popping.5 I don’t know how the hip orthopedist will handle this news.  I got my hand/wrist checked out by the hand orthopedist6 almost two weeks ago. I have De Quervain’s Syndrome, which is basically tendinitis and tenosynovitis of the thumb/inner wrist. Typically it’s an overuse injury that moms and gamers get. Mine is from my dad’s anger outburst almost a year ago.78 The doctor put a steroid injection in the joint, which was especially unpleasant since the lidocaine shot was useless9 and he put the steroid injection through the nerve. So anytime I move my hand a certain way, I scream or flinch from the burning pain that shoots out my hand. If the tendinitis doesn’t respond to the steroid, I may have to have surgery on my wrist.  Oh, and I started a store on Etsy. Right now it just has barrettes, headbands, and hair elastics/ponytail holders. I’m planning on adding bracelets, necklaces, earrings, lanyards, and pacifier clips next. Eventually I want to add purses and my mom wants me to branch into doll clothes. I hope the stuff sells & eventually gives me a way to maintain an income off of SSDI/SSI. Fingers crossed, right? I also need it to succeed to prove my dad wrong. Twice in the last week he’s told my mom that he thinks it’ll fail. He’s hinted at the same to me multiple times. Of course he’s been on an anti-Janet rant for several weeks now.10 Anyways… It would really help if you bought something. If you can’t buy anything, I understand. Please considering sharing the link. Maybe someone will see something that they want. I guess that’s all for now.  I’ll try to not stay away as long next time.  My right knee started acting up during the warm ups for my hip’s physical therapy sessions. ↩I hope that this doesn’t mean that I will need surgery on my right knee. ↩This wasn’t really news to me. They hadn’t been checked since the 90s, but I never completed the strengthening exercises for them back then, so if they’d gotten stronger, it would be the result of a miracle. ↩I hope I don’t end up with an ankle orthopedist, too. ↩Part of the popping is because my SI joint is extremely unstable. ↩There are so many cooks in this fucking kitchen. ↩As the orthopedist put it as he dictated his notes, “The injury is a result of her deranged father” and his early onset dementia. ↩Did you know only 5-10% of dementia patients become violent? Dadada and dad have defied the odds. ↩Many Ehlers-Danlos patients don’t respond appropriately—or at all—to the drug. ↩If I cook, it’s the wrong thing. If I drive my car, I’m being selfish with his car; he doesn’t understand Nana gave it to me. If I don’t clean up the kitchen or living room on PT days or ask him to clean or move anything, I’m lazy. If I take my mom to a doctor visit or the grocery store, I’m stepping into his territory. Everything I do is wrong. ↩

Giving It All She’s Got



Oddly enough, I was reminded of Rachel of Nottingham last week when I was awaiting a referral to an orthopedist for my five-year-long hip issue and for my year-old dad-inflicted (unintentionally) wrist injury. Dottie is still “working” at UAB, so I’m on week three (technically) of the waiting game. She delayed on a post-respiratory failure referral to a lung specialist for my mom for six weeks. Dottie should retire, but she’s never going to leave. I kinda wonder how many people will die or have permanent ailments (that should have only been temporary issues) because of her laziness.  My hip feels like someone is slamming a hammer into the joint. Occasionally it has a sharp twinge that lasts an hour or two; that can be breath-taking1 and frightening. It can also be nausea-inducing.  My wrist doesn’t hurt much. I just can’t hold things well since the incident; I drop almost everything I hold for more than a couple of minutes. It also pops every time that I move it.  But enough about those issues that everyone knows I’m lying about, what’s new with you?  In a bad way. ↩

Just Whinge-Ing It


Apparently Nottingham is a boring place at night because my number one stalker felt the need to comment on my blog again. As you can see, one of its residents, who claims to be named Roslin, is so bored that she felt the need to tell me: I will say something. All you do is take, take, take – you want money, you want people to come and do repairs for free. You and your parents do nothing but take and expect and whinge and moan. You are home all day, every day, do some repair work yourself because we all know you are not really sick! Interesting. It’s amazing that someone who lives across the globe from me knows not only my health status, but that of my parents. Apparently she missed a few weeks back when my mom was in the hospital with respiratory failure and kidney failure, or that her kidney failure has gotten worse; something I posted about rather regularly on Instagram. And she must have missed all the posts I’ve made on Twitter about my father having dementia and going through all the fun that that entails. A post shared by Janet Morris (@msjanersm) on Jan 21, 2017 at 4:38pm PST A post shared by Janet Morris (@msjanersm) on Jan 23, 2017 at 10:15am PST A post shared by Janet Morris (@msjanersm) on Jan 25, 2017 at 11:26am PST Almost. A post shared by Janet Morris (@msjanersm) on Jan 27, 2017 at 9:55am PST Signs at the hospital are confusing. A post shared by Janet Morris (@msjanersm) on Jan 27, 2017 at 9:57am PST Apparently dad had a panic attack at the grocery store with mom, when she went to get something w/o tell him, today. #dementia — Janet Morris (@janersm) August 3, 2016 Now he thinks his phone is trying to keep him from saving appointments on it. #dementia — Janet Morris (@janersm) October 4, 2016 Dad’s EEG & Doppler are tomorrow/later today. #dementia — Janet Morris (@janersm) October 20, 2016 Anyone know if this also can involve anger & threats of violence? https://t.co/Aa1xviG2AY #dementia — Janet Morris (@janersm) January 16, 2017 The GP/FP said with his memory & behavioral issues and his family history (at least 4 blood relatives with #dementia) that it was needed. — Janet Morris (@janersm) March 7, 2017 Yeah, parents who have organ failure and parents who are put on dementia medication are so healthy. I really hope that Roslin is never responsible for the healthcare of anyone. Maybe she isn’t a doctor. If she is, then I bet her patients will all die very painful deaths because she’s clearly not good at this kind of thing. I know that Roslin has missed out on my health issues, which have also been discussed on various social media outlets and in private entries on here, but that’s not new. In fact, that’s kind of her shtick. She’s always wrong about my health. I know that Roslin of Nottingham once went by the name of Rachel Cooper. That time she was so wrong that she, in her rush to judgment, didn’t realize that I actually had something wrong with my knee that would require surgery and months of rehabilitation. In fact, bringing up Rachel’s failure at diagnosing me became a bit of an ongoing joke. I tend to laugh at pathetic little trolls like Roslin/Rachel. That’s all you really can do with them. Well, that and pity them. Poor little sociopathic babies. I think that she may also go by “Rachel Clarkson”, the person from the United Kingdom who decided to send me a snarky tweet last week within a day or so of my posting the link to GoFundMe. Who knows what her real name is? I bet that her internet provider does. In fact, I’m hoping that they get back to me on my inquiry into it. I hope Roslin/Rachel realizes that people who are chronically ill and who are caregivers of people who are chronically ill have a tendency to whine and moan about their lives because having health issues sucks. Not only does it make your life painful and stressful, it drains your finances and any little bit of energy that you might have. People like me complain because life is not something anywhere near pleasant, and part of that is because I have to regularly deal with people like her. Roslin/Rachel isn’t the only person who acts like this. People that I know offline do it. Distant cousins have done it, including the ones who submitted my name and video to a comedy show so that I could be mocked. Total strangers, ones who aren’t sick enough to stalk my blog for two years so that they can harass me, do it on Twitter; at least 3 times a week lately, I get an unkind message from someone. Their favorite thing to tell me is that I’m selfish or spoiled or that I suck somehow. Oh, or that I need to get a job or that I deserve to die or that my grandmother deserves to die. There are a lot of little variants of deplorable messages that people send. And you know what? I have a right to complain about that part of my life, too. I don’t have to keep it all bottled up because some random asshole on the internet can’t deal with the things I say. If they’re that chickenshit, then they need to find a hobby or get some therapy because clearly they have too much time on their hands and have something going on that’s ‘causing them to be inhuman assholes. I pity them and their fucked up existences. I may be poor and disabled, and I may end up going to jail and being homeless for having a dilapidated house, but at least I’m not a horrible human being who gets off on trying to make other people as miserable as them.

And I’d Be Like, “Why Are You So Obsessed With ...



I’m not sure how many posts this will take, but I thought it was worth documenting. @brettwestny @DonnaVishio “Uneducated dicks with guns” is practically the slogan of the state of Mississippi. Perhaps we should disarm MS. — Janet Morris (@janersm) February 23, 2017 @brettwestny @DonnaVishio I’m not. Have you ever looked at how Mississippi ranks in education? Plenty of people in “the hood” are educated. — Janet Morris (@janersm) February 24, 2017 @brettwestny @DonnaVishio Being impoverished doesn’t mean you are less intelligent. It just means you’re poor. — Janet Morris (@janersm) February 24, 2017 @brettwestny @Olivianuzzi I’m disabled, bro. If Trump wants to improve my circumstances he could give SSI recipients more than $750/month. — Janet Morris (@janersm) February 24, 2017 @brettwestny @Olivianuzzi There isn’t a damn thing wrong with my attitude. Yours needs work. — Janet Morris (@janersm) February 24, 2017 @brettwestny @DonnaVishio Right. Anything that can disprove your claim that people “in the hood” are uneducated isn’t worth sharing. — Janet Morris (@janersm) February 24, 2017 @brettwestny @DonnaVishio It’s not unfair to expect all children receive the same quality education. In fact, that’s the opposite of unfair. — Janet Morris (@janersm) February 24, 2017

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)