Passive-Aggressive Medical Personnel

I talked about part of this in another blog but I’ll just reiterate so it’s all here.

So the cardiologist had me do the ultrasound, and wear a holter monitor for 24 hours to record what my heart is doing, yadda yadda.

So my mom calls them to schedule a follow-up so the doctor can explain to me what my results are. The staff that answered the phone insisted that my results are normal and that no further appointments would be necessary. She also didn’t really speak English. For one thing, the things I am going through are not “normal”. It’s not normal be sitting on the couch and all the sudden your heart is pounding and you can’t catch your breath. For another thing, I want to hear it from the doctor. I don’t want to be diagnosed by someone who answers phones and can’t speak English, and says “you only have a few extra heartbeat.” My mom also asked her to fax my results to my rheumatologist so she can see what is going on, because for all we know, the Lupus could be attacking my heart. But out of spite, the woman didn’t fax the results to my doctor. We weren’t disrespectful to her, just confused. I don’t understand what her problem was.

So about a week later I called to schedule an appointment with the doctor because my rheumatologist wants to know what is going on as much as I do. I got a different person than my mom talked to, but she was equally as rude in insisting that I don’t need an appointment. She was practically yelling into the phone, and I just explained to her that I’m a little confused about the results and I needed some questions answered. She reluctantly scheduled my appointment. What I should have said was “It’s none of your goddamn business why I want to talk to him. Just do your job and schedule me and keep your snotty opinion to yourself.” But, alas, I didn’t. She caught me off guard, and so I was trying to be nice.

So I show up for my appointment today (a week and a half after scheduling it), only to find out that the lady scheduled my appointment at an office outside of my town, which I understand is the doctors’ main office, but she didn’t bother tell me that. So now, I STILL don’t know what is going on. She probably did it on purpose, just because I wanted her to do her damn job and mind her own business.

Not to mention the fact that she was shouting all this into the phone, so there goes my privacy.

You can’t possibly tell me that it’s normal to have your heart pounding most of the time, get out of breath from getting up off the couch, having your vision get fuzzy and feel lightheaded, and get so fatigued that you’re too tired to sit up. I can’t exercise, I can’t even take my dog for a walk most of the time. I can feel my heart pound in the back of my head because of the Chiari Malformation. I”m worried I’m going to start fainting if whatever this is isn’t taken care of soon. Just fuck off already.

I of course will never say this to these people. I refuse to stoop to their level of rudeness.

 

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Alternative schooling.

If you have a child with chronic illness who is of public school age, this blog entry is for you. This blog is also for you if you’ve ever considered home school or independent study for a child who learns differently, and is beyond their grade level.

This is partially a rant based on personal experiences, and obviously biased because I was in alternative education programs. But hopefully it is insightful and helpful in your decision.

My health problems started to be apparent around 6-7th grade. I had issues of catching a lot of colds before then, but it really didn’t take hold until middle school. And with that came a lot of concentration issues. I remember the exact day I realized it was going on. I was an avid reader and often would stay up too late by accident because I was hooked on a book. But one day I just couldn’t read anymore. I would read the words but none of it made sense. None of it would stay in my brain or paint a picture anymore. I’ve had a problem with reading ever since.

The concentration issues effected more than just reading. I’ve been unable to do any sort of math that takes memorization of formulas or steps. If I could just remember them, I might be pretty good. But I can’t. They don’t stick. Sometimes it’s bad enough that I don’t even remember the numbers I’m working with and I have to keep referring back to the problem in the math book.

I overlooked all of this when I was in middle school, and for a part of high school. I didn’t think I had a problem. I thought I just wasn’t good at school. I was pretty hard on myself. And teachers were too. As I’ve said in my other blogs, they treated me like a bad kid that didn’t want to do the work, and my self-esteem is still recovering from it even today.

Along with the concentration issues came a great deal of fatigue, which hurt my concentration issues even more. Looking back, I don’t know how I got out of bed at 6 every day to spend all day sitting in a hard chair memorizing stuff, only to come home and have to put in more hours on homework. No wonder I didn’t do my homework. It got to the point where I couldn’t manage to go to school the whole 5 days every week.

Then there were other things, like the joint pain and muscle cramps. This made P.E. difficult. I don’t think anyone that puts that much time into school should also have to rely on their body to get a grade. Not that exercise isn’t important, but let’s be realistic. How much exercise do you actually get in P.E.? I think they should just call it S.I.T.S. An acronym for “standing in the sun.” Because that’s all you do, when you’re not digging the little rocks out of your palms from doing push-ups on asphalt. Kids are pretty active on their own when they have time, which homework seems to interrupt. Any kid would love to go on a bike ride instead of doing homework.

The majority of what kids actually spend their time doing at school is busy work. Who needs to do 900 math problems when you understand how to do it by the 5th problem? Who needs to get a cramp in their hand writing their spelling words 5 times each? (which obviously doesn’t work because I know plenty of adults who couldn’t spell to save their life) There are better ways to learn these things that don’t involve mind-numbing repetition. 

Back to the health issues, I didn’t have the energy to burn on this kind of thing. By the time I was done wasting my energy on busywork, I had no energy left to do anything I enjoyed. I gave up sports, I wasn’t in any clubs, I played guitar but was having issues learning it because I was so tired. I didn’t have many friends because there just wasn’t time for it, especially when I started getting homework on weekends. It was never-ending. There are healthy kids who feel this way too. It’s just too much.

Teachers are assholes, too. Not all of them, of course. But a lot of them. They want to be there as much as the kids do, and they take it out on everyone. Kids get poor grades because they forgot to put their name on their paper, or some other ridiculous mistake, so they aren’t even being graded on the material. They’re being graded on the fact that school makes them so tired they forget to put their name on things. I did an illustration once for science class, and I spend all evening on it because I love to draw, and there was nowhere on the front for me to put my name, so I put it on the back. I handed it to the teacher and I said “I couldn’t fit my name on the front” and he said “Well I’m taking ten points off because we put our names on the front of our assignments in this class.”

Kids don’t need to be dealing with this stupidity. It’s unnecessary and all it does is add frustration and cause self-esteem issues. This isn’t learning.

Things got better when I decided to change the way I learn. My mom found and signed me up for independent study. In this program, I saw a teacher once a week to turn in my work, have conversations about literature, take tests, or get any help I might need on assignments. The rest of the time, my education was up to me. I was on my own time. I could get the sleep I needed to be able to devote energy to learning and remembering. I wasn’t doing busy work. If I understood something, there was no need to spend further time on it. I wasn’t being exposed to all sorts of germs day in and day out. And I wasn’t being picked on by teachers for being sick.

My little brother has also chosen the independent study route. He hasn’t been sick like me, but busywork isn’t for him, either. He too got tired of the stupidity that goes on in public schools, and the exhaustion that ensues afterward. He is absolutely brilliant. Public school was holding him back. He is in High School and currently taking college classes that give him both high school and college credit, and he is getting ahead.

Unfortunately, home schooled kids and independent study kids are looked down upon by society because they don’t fit into the cookie-cutter school system. Whenever I bring up alternative schooling to adults they think it’s ridiculous, which is unfair, because they haven’t experienced what public school is like in the 21st century. Kids also seem to think it’s not real school. But having the ability to manage your own education is more adult-like and provides more useful experience for your future than picking your nose in some classroom.

Independent study isn’t for everyone. But public school isn’t for everyone, either, and people need to stop acting like it is. Everyone learns in their own way on their own time, and you need to do what is best for you. If in any way you or your child is having a hard time in school, it is worth considering. It is worth preserving self-esteem. It is worth experiencing your full potential. 

update schmupdate

I heard from my rheumatologist today. I’m a little anemic, but other than that my vitamin levels are normal. So my B12 heart palpitations theory is out the window. I really don’t have a clue why my heart is pounding at random times for hours.

The cardiologist office called and told me my “test results are normal”…normal? It’s normal for your heart to pound for no reason? I’m confused about this right now, because they didn’t give me a solution, and the person who called me barely spoke English, so I couldn’t ask her to be more specific. Is it too much to ask for people that work in the medical field to be able to speak decent English? She also said that I don’t need medicine for it or to see the doctor again. So I’m just supposed to do nothing? And she couldn’t be bothered to fax my results to my rheumatologist either.

I called the cardiology office again today to schedule an appointment to talk to the doctor to find out what the hell is going on. I got a different lady this time but she was still quick to tell me I don’t need an appointment. I told her I needed some clarification and to be able to tell my rheumatologist what all this means. So she scheduled me. Real big of her.

My rheumatologist wants to make sure the Lupus isn’t attacking my heart. That’s why I can’t take “normal” for an answer. If it is in fact attacking my heart, I’ll have to go off the Benlysta and try another medicine, because Benlysta doesn’t protect your heart.

It is also possible that I’m just having benign arrythmias. In that case, I hope they can give me a beta blocker or something. I’m sick of this shit. It’s ruling my life right now.

The other thing is, my heart pounding all the time isn’t good for my chiari. Every beat makes my cerebellum pulse down into the hole through my skull and it gives me crazy headaches.

Lupus and owning pets.

I teared up while writing this, which is an understatement to how much my pets mean to me, and how much they pick me up on the bad days.

I have two cats, Finn and Zoey, both female. I also have a male dog named Fergus, who is a Rottweiler/chow chow mix (and possibly a bit shar pei, he has folds) who is about 7 years old. I take part in their care along with my family, even though my part is small at times, depending on how I feel.

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We adopted Zoey in 2007 as a kitten from the shelter. She had a feline virus and the shelter wanted to adopt her out faster because she would be healthier in a home, rather than stay at the shelter where she could develop something else. We were a little worried for her but we took her in along with her medicine, and set her up in the spare bathroom with a kitty bed, food, water, and litter. We kept the door shut to keep her in a little space, and to keep the dogs we had at the time  away from her. The night we brought her home we also had tickets to see a show, so we spent the evening away from her, but she was cozy asleep in the bathroom, so we weren’t worried. When we got home, I peeked in on her, and she of course had unraveled the toilet paper all over the bathroom. I knew she would be a healthy kitty from then on, and she’s been a ball of mischief ever since. I can’t explain to you how much I love this animal, and how instrumental she has been in helping me deal with all my health issues, I can only say that however much you love your animal, multiply that by ten billion, and that’s a fraction of how much I love my Zoey.

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Finn was sort of “a gift from the universe” you might say. My brother and I were taking college classes, and he found her one night while waiting for my class to get out. She was so tiny. She was hanging out by the sprinklers getting some water. I sneaked up behind her and grabbed her. I thought for a little while that she could have belonged to someone, but I was informed by the college staff that people dump kittens on the campus. She was emaciated, and definitely the runt. That night we brought her home was a scary one. She collapsed and wouldn’t stand up. We nursed her with an eye dropper full of sugar water. The area we found her was a very dry desert-like climate, and she was probably severely dehydrated. We were pretty lucky she responded well to the sugar water, because she could have died. But she didn’t, and soon we had her eating and drinking on her own, and she even took to the litter box immediately despite being a stray. She is now a healthy spunky playful kitty. She is still relatively kitten-sized since she was a runt but she is the strongest cat I’ve ever seen. There is no holding her if she doesn’t want to be held. She can hold her own in a wrestling match against Zoey despite being smaller. This is a rare photo of them “getting along”….in my laundry basket of course.

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My kitties aren’t friends. Zoey is very territorial and only tolerates Finn’s presence. The only thing they enjoy doing together is kicking each others’ ass.   

I unfortunately am very limited right now in the things I can do to help take care of them. Before the Lupus hit me hard, I took turns in cleaning up after them, like changing their litter and doing any laundry or otherwise any mess that they might create. My ability to do housework in general has dwindled over the past few years, but with the help of Benlysta I’m hoping I can change that.

I am, however, able to help in other ways. I can fill and freshen up their food and water dishes. When I have energy I spend a good amount of time playing with both of them. Zoey doesn’t much like it when I play with Finn, but she’ll just have to get over it. It is also my legs that Zoey chooses to sleep on all night, which is cute… and not cute at the same time, if your legs hurt. She keeps choosing to sleep on me no matter how much I toss and turn. She is a loyal kitty. Once in a while I’ll wake up and realize Finn is sleeping on me, but since I belong to Zoey, it doesn’t happen that often. It’s cute when it does, though.

When my elderly dogs went to dog heaven, and some time went by, my family agreed it was time to adopt again. We weren’t really looking for a puppy. I felt I didn’t have the energy to devote to a growing energetic dog, and it wouldn’t be fair. We instead decided to adopt a worthy adult dog (they’re all worthy, of course, which made it so hard to choose) and spent time  meeting a handful of dogs and walking laps around the shelter peeking into the dog runs. Social media was the eventual matchmaker in our adoption. A 6-year-old rottweiler mix had been surrendered by their owner, and had spent some time in a shelter in Ojai, and was moved to our shelter to see if he would be adopted by someone here. His name was Sparky then, although I am unsure if that was his given name or his shelter name. It most certainly didn’t fit him though. We wanted to keep the tradition of naming our dogs celtic names, and we settled on Fergus. His full registered name is Fergus Bear, which ironically we came up with long before the movie Brave was released. 

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Fergus’ adjustment to a new home has been both easy and difficult. It’s been a year since we adopted him (actually, tomorrow is our anniversary) and it’s been a learning experience for all of us. I’ve learned as much about Fergus as he has about us. I can tell that his previous owners had him trained on a bark collar because he never barks, he only whines, and the whining is something dogs on bark collars learn to do to get attention when they can’t bark. I am terribly against bark collars. My honest opinion is that if you don’t want your dog to bark then don’t get a dog. I’ve spent a year with him trying to break him of his bark collar training. It’s been an incredibly slow process but I’ve made progress. He went from no barking at all, to barking when he is rolling on the rug to itch his back. Whenever he does that I give him a lot of praise. I’m hoping if I can get him to bark like a normal dog he won’t whine. The other reason I want him to bark is I’d like him to bark when someone knocks on the door. It makes me feel safe.

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Fergus has some separation anxiety. You would too if your family dropped you off at the shelter and you got adopted by another family and never saw your first family again. If you start petting him, he’ll cry when you stop. He used to cry if he was in a room by himself, he doesn’t do that anymore now. He gets upset when we leave the house, too. He cries and rolls over to lay on our feet when we come home as if to say “I never thought I’d see you again.” He’s starting to get used to use leaving and coming back, though. He recognizes that we always come back. If the house is going to be completely empty for a couple hours we usually put the TV or the radio on, the white noise makes him less worried.

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The easy part of Fergus’ adjustment was that he is very house-trained. I live in a condo and do not have a backyard which must have been confusing for him at first because he wasn’t sure how to ask to go outside. He had a few accidents but after he realized that he would be walked every few hours to do his business, there hasn’t been an accident since. He probably gets more exercise than a dog who has a yard because he gets to go on lots of walks. He loves his walks, and I do too, when I am able to. I trade off with my family on walking him but lately I’ve been missing out because of my headaches and heart palpitations. My brothers have taken over and walk him for most of his walks now. I used to be able to go every day but now it’s a couple times a week, although I have walked him when I had a migraine before out of necessity. When you gotta wee wee, you gotta wee wee. 

I miss going on walks regularly with Fergus. I hope I can get back to going every day, and even squeezing some park time in that he so loves. The exercise is great for both of us. People don’t realize all the little things that illness can take away from you.

My pets make my day better. They keep me company on my bad days and constantly make me smile and remind me why I get out of bed everyday to keep fighting for Lupus remission. I am thankful to be able to have them, and for the help of my family in taking care of them since I am sometimes not able to. My family enables me to do and have things I couldn’t otherwise have/do myself and I am truly grateful because it helps me get through the bad days.

I can’t write this blog without mentioning my now Dog Angel, Reilly. He went to dog heaven in 2009 at the amazing age of 17. He was a Rottweiler mix like Fergus, but his other half was probably German Shepherd. Here’s an old-timey photo I had the privilege of taking, circa 2006: 

ImageReilly was funny. All animals are funny, but you know what I mean. I can’t eat fruity candy without thinking about him. He loved fruity candy. I would open a package of it and he would race down the hallway and beg for it. He would eat fruit loop cereal too. On hot days I could even get him to eat a popsicle. I’ve never heard of another dog that loved fruity flavored things. Miss you, waggles. ❤

 

Benlysta #5 and other junk.

On Monday I had my 5th infusion. They finally decided to skip the solumedrol and so I’m not having all these wonky side-effects right now which is really nice. They’re going to run some vitamin tests with the blood they took so I’ll know by next week if the heart palpitations and chest discomfort is in fact caused by a vitamin deficiency. I’ve managed to gain some weight, finally. As soon as I started taking a B12 supplement, I started gaining weight, after months of trying to put weight on. No coincidence there.

My mom sat on the phone with the pharmacy while I was getting the infusion to fight with them on the doctor’s office’s behalf. Apparently they billed me for 2 infusions and only sent one to the office, so the office was short one dose. And it was the 4th person before anyone could figure out what my mom was talking about. I made a few “math is hard” jokes after she hung up the phone.

When I was at the rheumatology office, it seemed like there were 3-4 people there who were sick. Not just  cold-sick. Like, Flu-sick. I couldn’t help but be irritated. I guess I don’t understand why they weren’t at the emergency room instead. So I’ve been crossing my fingers that I don’t come down with something just from being at the office. I’ve managed to avoid it this long and I really would like to keep avoiding it. I of course used hand sanitizer and “don’t touch your face” and all that. But there’s only so much you can do.

My doctor asked me if I had received my flu-shot. Anyone who knows me knows that I think flu shots are a waste of money. The CDC just ruled flu shots in the US “ineffective” so I’m happy I didn’t get one, because what would have happened was I get injected with 3 strains, it knocks down my immune system, some 4th strain comes along and makes me really sick because I have no immunity left from the flu shot, which equals a week in the hospital for me. No thanks, I’ll keep my $25 and take the gamble.

I haven’t heard back from the cardiologist yet. I had an ultrasound and wore a holter monitor for 24 hours (what a buttload of fun that was) So I’ll call them today and schedule a follow-up to see what the hell is going on. Beyond “yup, you have heart palpitations” I’m not expecting them to really find anything wrong with my heart.

Disabled gamers.

I was nerding out reading xbox magazine yesterday, and much to my surpise, there was a huge article about disabled gamers, and an organization that devotes their time to help game developers make them more accessible for disabled people. A few issues back I also remember a few writers talking about how video games help them through their chronic pain like fibromylagia and spinal stenosis.

I’m terribly excited to see such a big brand noticing and giving lip service to disabled folks. I feel like for the first time our voices are really being heard, and taken seriously.

There are already games that are more accessible to the colorblind, as well as the hearing impared, with options to change color preferences and high-contrast subtitles. There are future plans for voice-control and more accessibility to folks in wheelchairs and amputees.

While I am not challeged by severe disability, I do have my limits. My fingers frequently get so numb I can’t feel anything and I lose my dexterity. The founder of Ablegamers.org has a sister who experiences the same thing due to MS, and it makes it hard to play games when you don’t have feeling.

I also tire easily, my hands cramp, and I can’t spend too much time sitting in the same chair. Game makers are helping with this as well as helping people with cognitive issues by making more save points within the game so you can play for a short time and not get frustrated because you can’t save your progress.

please check out ablegamers.org. It’s just plain awesome.

Cardiologist.

I went to see a cardiologist today. It was just a check-up because I have Mitral Valve Prolapse, and I’ve been having heart palpitations and chest discomfort lately. I’ve never had symptoms from the MVP though. I really don’t think I have a structural problem with my heart that could cause symptoms, and the doctor didn’t seem to think so either. We talked about beta blockers and how they might make me sleepy, so that’s iffy. They also tend to lower your blood pressure but my blood pressure is normal. He talked about doing a treadmill stress test but we both agreed it wasn’t really necessary. Tomorrow I’ll be going to get an ultrasound to check things out, and Thursday I will be wearing a holter monitor for 24 hours so they can see what my heart does for a whole day.

I haven’t ever had to wear a holter monitor before, but it’s not a big deal. It’s just leads stuck to your chest that are attached to a little computer box. Upon googling “holter monitor” I realized how glad I am not to be a man with a hairy chest.

All in all, I really don’t think the problem is with my heart. I think the problem is with my potassium/B12/Folic acid like I’ve rambled on about before. But it’s good peace of mind to know what’s going on with my heart since lupus can attack your heart among other things.