Pain


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!


On late Tuesday night/early Wednesday morning, I fell on the kitchen floor. I didn’t hurt my left hip, but I banged up my right knee and both arms & wrists. My left wrist is still swollen and hurts like crazy. I’m probably going to get it checked this next week if it’s still hurting on Monday and if I can get an appointment. I hope it clears up before I have to do that.  Between pain from falling, spotty internet & phone access, my iPod getting crankier and crankier, Facebook’s Messenger app acting antisocial, and other “fun”, this week has been rather unpleasant. Hopefully, the next one will be better. It has to be, right?

I Keep On Falling



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)



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



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 ...



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