health


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   Recently updated!


Have I mentioned on here before that I’m allergic to raw onions? I think I have. It’s something I discovered about five years ago when I ate something with raw onion on it & broke out in hives across my face. I confirmed it a few times after that to make sure; usually I had Benadryl on hand.1  Since then, I’ve been extremely careful about not consuming raw onions. I try to make sure to only order onions that I’m sure have been thoroughly cooked. And before you ask: Yes, it is absolutely possible to be allergic to raw onions and not to cooked ones.2  Today, I went to Quizno’s and had a sandwich that had “sautéed onions” on it. I took a bite & found they had the taste & texture of raw onions. I spent minutes taking apart my sandwich. My dad talked to the manager/franchise owner who said the onions were “sautéed” in the microwave. I know you can do that to a certain degree in a microwave, but the onions on my sandwich were either raw or barely cooked. Either way, they were a danger to me & a lesson learned.  I should just skip all onions & mention I’m allergic to them when I’m at restaurants—advice that was given to me a few years back by Anna. She’s a smart lady.  Because I’m me. ↩The theory is that the things that cause the allergy are broken down by the heat of cooking it. ↩

Locked Me Out and Threw a Feast



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


I think I mentioned that I had hip surgery last week. My recovery has been going pretty well. I’ve has a few mishaps. Last week, for example, I accidentally pulled on one of my sutures & it loosened. The next day1 I found out that it was barely staying in when went with my mom to physical therapy & asked Erin2 to check it out for me.3 While she went to find a band-aid, it worked its way the rest of the way out. Since then, that incision has had a little yellow discharge, which I’ve told the orthopedist’s team, but has done well otherwise. Everything has been goin well. The only hard part is a hard spot in my left arm.  Calling it a spot is a misnomer. It’s a hard, raised area stretching from my wrist to my elbow. It runs right along the vein that my IV from surgery was put in. Somehow they inflamed that entire segment of my vein. It’s a bit sore, red, and warm, but the family doctor thinks it’s just a little phlebitis.4 I should be okay.  It’s just a little bizarre for me to know exactly where the vein is now.  Thursday ↩A physical therapist who has worked with me for 3 or 4 years. ↩She’d once told me that they could check or even remove stitches. ↩Phlebitis is literally the inflammation of a vein. ↩

Baby, Now We’ve Got Hard Blood (Vessels)



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?


I’m still annoyed about the appointment with the orthopedist. My mom was, too; so much so that she tried calling her orthopedist to see if he’d let me switch to his service. Since I’d already seen today’s doctor, mom’s doctor won’t see me. Now I’m worried about reprisals.  I’m also concerned that this doctor will continue this same standard of care. It’s incredibly disheartening to think that my hip could go untreated because he thinks less of me over my weight. And how does a doctor expect a person to lose weight if their movement is limited by an untreated joint problem? It doesn’t make sense. 

Hip to be Square



My hip has been bothering me for a while now—it’s been subluxating for five years and in pretty bad pain for about six months. I finally worked up the courage to talk to a doctor about it & I got referred to the orthopedist. The orthopedist spent less than five minutes in the room.  During that time he would ask me questions, then interrupt my answers with other questions. He told me that my joints look normal & that he thinks that I might have muscle, tendon, or ligament problems because…fat people don’t exercise enough to keep their muscles & joints from being lax.  Yep.  My hip hurts during exercise because fat people don’t exercise. Also, all that hypermobility stuff1 is because I’m fat and don’t exercise. It has nothing to do with genetics. I’m just some dumbass fat girl who is in pain because she sits on her ass all day eating bon bons and watching soap operas. I don’t really exercise. I haven’t been working on my strength at all.  I have to go through six weeks of physical therapy before he will even consider an MRI. The referral for the physical therapy said I needed help with my right hip instead of my left. Apparently I’m so fat that I’m too stupid to know the difference between my left & right sides. He wants me to have a greater range of motion in my hip, which is laughable for a person with hypermobility. Six weeks of physical therapy will be twelve visits. Medicare only allows for twenty visits.2 I have six more weeks of intense pain without knowing what’s going on, and if it’s something that needs a different kind of rehab, I am screwed.  He also got cantankerous about how I filled out my allergy section. Well, if I don’t call NSAIDs an allergy, doctors there prescribe them for me & tell me that I’m imagining any adverse reaction. He was also mad that he couldn’t put me on narcotics.3 Basically, I’m still in pain & will be for the next month or two, and there’s nothing I can do about it. If I weighed less, I might have more answers or I might have a concrete plan to get those answers & the orthopedist would have actually listened to me about the pain. It’s bad enough that being fat makes me feel like I’m unlovable and unattractive & that it encourages assholes to harass me regularly, but when it keeps doctors from providing adequate care, I just feel lost & pissed off & like nothing will ever get better.  Joint laxity. ↩Oops. I guess Hollie will get pissed because I’m ranting about something government-related again. ↩That’s not my fault. ↩

Designated Fatty


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 ...



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?


This afternoon before I went to my pulmonary function test, I had a notification pop-up on Facebook saying that Tom Steele had responded to the Metro story about the screenshot. I was a little alarmed, but not completely surprised. That seemed to be his style: to pop back into my notifications weeks after we interacted. So I responded, because I’m me and I couldn’t stand that he was still spewing crap about what happened. Then I went to my appointment. When I came back, I saw a notification that the story had appeared on George Takei’s Facebook page,  which made me feel a little less creeped out by Tom. (There’s a first time for everything.) Since I noticed that the article that was linked didn’t mention the Metro story, I backtracked to the Huffington Post Australia story, which did. Like before, I feel a little guilty that Tom is getting flack, but glad that the issue itself is being talked about. I do worry that he’s going to attempt to try to defame me like he had when the first rush of people started sending him a few tweets. (I’m pretty sure that if we stacked up how many tweets & notifications he’s gotten on the issue, he’s gotten significantly fewer than I have.) Of course, I did have polls, so that caused a few notifications. Anyway, I doubt this has truly up-ended his life, or he would just ignore it. Whatever. Speaking of the polls…. #period #periods #livetweetyourperiod #feminism #reprohealth (please RT) During your period do/did you typically go through: — Janet Morris (@janersm) November 30, 2016 By popular demand: “Weapon of choice” when you’re on your #period? — Janet Morris (@janersm) December 1, 2016 Have you ever had to take birth control for your #period? — Janet Morris (@janersm) December 1, 2016 Have you ever had or considered having surgery because of issues related to your #period? — Janet Morris (@janersm) December 1, 2016 Obviously none of the polls are scientific, but it’s pretty obvious that most people who menstruate use more than 11 pads in a cycle. Since more than 11 pads/tampons got 86% of the vote, I feel a bit less freakish than I did when I didn’t think I’d get more than 20 votes in the poll,1  wrote about my wonky periods, and when I first responded to his Medium post. I mean, I know that my period is super-bad, but I wasn’t totally sure how it compared to normal. While you’re here, please consider donating pads and tampons to A Woman’s Worth Inc.’s Prison Project, which sends feminine hygiene products to inmates. Also, please take some time to research the issue of people not having adequate access to these products while in jail or prison, or when they are impoverished and/or homeless. This is a major problem in the United States, and I’ve noticed, from some of the responses, that it’s also a bit of a problem in other countries. That’s something that we as a society need to work on. Got 17,338. ↩

Out of Nowhere, Oh My.