Side Effects

I was serious about the upcoming posts in the last Saturday Summary, Speaking of Saturday Summary. I was. Still am, but this week has been wretched:

Monday I started a higher dosage of Lyrica: 200 mg twice a day, and I had a subbing job.

Tuesday I was pretty much dead to the world, I slept for most of the day, even somehow managing to answer my father when he told me that my mother was sick and needed to be taken care of because she had a high fever.

But I didn't find this out until much later.

My dad works from 4 until 8, so he came to my room around 3ish to tell me Mom was sick and I'd have to make dinner and whatnot. I don't remember this at all, but he said I answered him.

I woke up around 7:30 to discover my hands and feet, and nose were swollen to the point it was painful the way my skin was stretching to contain the whatever. I was scared, so I went downstairs to get my mother's opinion and found her laid out on the couch with two blankets, shivering. We were quite a pair.

Luckily, as I began to move around, getting food or whatever, it began to dissipate- but I left a message for Dr. S. anyway.

I was going to eat dinner in my room, so I left the phone next to my mother so she wouldn't have to get up to answer it. It rang, then, and it was my brother, Mick. My mother was reassuring him about something, and telling him that sometimes, at school, "these things happen." I knew then it had something to do with Manny, Mick's son, so I waited to find out what it was.

You would think that since the school got the news that Manny was diagnosed as autistic (1 in 110), and that his doctor recommended he have a full-time aide at school, that his teacher would keep an extra eye on him until the paperwork goes through.

Not the case.

When Debra brought Manny home from school she smelled something. She checked Manny out and found it: poop. On his hand. She asked him when he'd gone to the bathroom and he said snack time, which is 10 o'clock in the morning. He had poop on his hand all day.

I can't explain how upsetting this was. Yes, these things do sometimes happen, but in Manny's case there were three teachers in the room that know he needs special attention. If this could get through, what else could?

It's so scary, he's just a little boy. A little boy even more vulnerable than the average kindergartner. Regardless of his place on the autism spectrum, he's supposed to be safe at school. Yes, kids fall and break their arms on the playground, it happens, but this wasn't an injury.

It's been dealt with, though, and Manny's paperwork got an extra push through the system because of it.

Wednesday morning Dr. S.'s office called and told me to go back on the 150 mg dosage of Lyrica until my next appointment with him, which is at the end of this month-- which means yet another month of symptoms. Another month of this discomfort- the aches, the burning in my skin, the exhaustion...

I worked Thursday and Friday and have spent a grand total of 6 hours awake since I got home on Friday...well, plus 4 now, counting this morning. What am I going to do about getting a job? What if lightning strikes and I actually get a job before I see Dr. S. again?

My stomach is still killing me (Mystery Diagnosis and Other Medical Issues, Harry Potter and the Stomachache from Hell)...I just took a Vicodin so I need to wrap this post up before the tasty, tasty drugs start making me goofy. Dr. S. gave me the name of a new gynecologist, so I've got to make an appointment. Dr. S. said she's known for her laparoscopic skills, so we still might get a diagnosis of endometriosis. I'd be happy with any diagnosis, though, as long as the pain stops, with as few side effects as possible...I don't know if I can take any more.

A Light at the End of the Tunnel

Had another appointment with Dr. S. this morning, and an interesting thing happened when the nurse showed me to my exam room. "Alright, Joanna, come on in. The doctor wants you to have an EKG today, so if you'll just unhook your bra and hop up on the table..."

What the hell? All of a sudden we're concerned about my heart? What does my heart have to do with anything?

Come to think of it, I never did find out why this was necessary in the first place- I was too relieved when he said everything was normal to remember to ask.

So the good news is my heart's completely normal!

And so's just about everything else. The massive amounts of blood I gave in the name of testing came out all clear except for the minor glitch that is my white blood cell count, which is always a little low.

The bad news is we're no closer to figuring out just what the hell is going on with this abdominal/pelvic pain I'm having. Dr. S. agreed that a second opinion is needed from the gynecological angle (Mystery Diagnosis and Other Medical Issues) and gave me the name of a gynecologist that his other patients have liked. He's not worried about the cause so much, though, since the tests I've already had have ruled out the more dangerous conditions so now it's just a matter of getting me comfortable.

Comfortable. I wonder what that's like?

So we upped my Lyrica because it's not nearly as strong as it needs to be, and added a new stomach medicine that I can't remember the name of. And more Vicodin, because that shit is gooooold.

Is it nap time? I think it is.

Oh, and not that Hyperbole and a Half needs more publicity, but Allie Brosh posted an amazing description of depression that everyone should read here at Hyperbole and a Half: Adventures in Depression. Check it out.

Mystery Diagnosis and Other Medical Issues

Bad news.

Really bad news.

I'm going to have to change my "Endometriosis" tag to "Mystery Diagnosis".

Why? Because I got a phone call from the gynecologist. My old general practitioner's (GP), Dr. J., office sent my most recent blood test results to the GYN, so with those and my ultrasound results he made a decision.

The decision that my problem was not gynecological.

So I guess it's just a coincidence that my pain is synchronized with my cycle. And apparently he doesn't care anymore that I said I think it's endometriosis, and that he agreed that it could be, and that he himself said the only way to tell for sure was surgery. But apparently none of that matters anymore because he had some kind of psychic vision that my problem isn't gynecological.

If it ends up being endometriosis I'm going to make an appointment just to punch him in the face.

I've got an appointment with the new GP, Dr. S, in about two weeks so he's going to get an earful about that. For sure.

--

One of the co-morbid disorders of fibromyalgia that isn't often talked about is AAIFS, or Annoying-Ass Ignorant Family Syndrome. AAIFS is almost never found in the fibromyalgia patient themselves but is actually found in the people surrounding the patient. Variations of AAIFS are AAIFS2 (Annoying-Ass Ignorant Friend Syndrome) and AAIAS or Annoying-Ass Ignorant Acquaintance Syndrome, often found in friends of friends or coworkers of the patient.

Symptoms of AAIFS, AAIFS2 and AAIAS include comments covered in What Not to Say, but also include a general ignorance, often with refusal to comprehend what's being told to them in response to their ignorant-ass comments.

Yesterday I was feeling pretty awful so I took a Vicodin and, for whatever reason, while I was showering an hour or so later I was overcome by weakness, dizziness, and nausea-- I really thought I was going to faint. I sat down for a little while because I was afraid that if I laid down I really would pass out, so I sat and waited it out. When it passed I was okay, but pale and shaky. I told my mother what happened and that I'd be staying downstairs for a little while afterwards in case I really did faint.

She started hemming and hawing about my eating habits (which are normal and haven't changed in months), then started in about how much I've been sleeping-- which I admit is a lot, 12 hours or more daily, but that's because of the change in medication and I may need a new sleep aid.

I tried to explain to her about how switching a major part of my medication (Lyrica now instead of Celebrex: New Doctor, New Methods) is going to mess me up for a while until we get it worked out, and how Dr. S. said he would normally see a person in my condition for whom he's changing a major part of their medicinal regime he would see once a week but because of our horrible insurance and financial difficulties I can only see him once a month.

Then she did her "I still disagree even though you had a logical and reasonable answer for each of the points I brought up" pursing her lips face (not to be confused with her "I want to say more because I think you're wrong and stupid but I can't because you're in no condition to fight" pursing her lips face) so I knew that was the end of the discussion.

It's so frustrating, and I don't know what to do. Arthur, Janet and I were talking about Arthur's, Mick's, and my fatal stubbornness that we get from our mother...I mean, we hang on to things that we think or feel waaaay past the time that everyone else thinks or sees that we should stop, but we either don't see it or don't care that it's there. Tenacity is a good thing, but we cross the line into obstinacy.

It takes a lot, a lot, to convince her to change her mind, and I really don't know what else to do. She has plantar fasciitis, so it's not like she's a stranger to chronic pain...but she just refuses to...or she can't...I don't know. I don't even know how to describe it.

Let's just say she's ignorant of the real situation but is too stubborn to see it differently and it annoys the crap out of me.

--

This situation sucks from about 15 different angles.

But hang in there with me, kids, we'll all get through it.

Your Good Deed for the Day

Sorry for leaving you stranded yesterday-- the trip to Maryland was cancelled because my father has his annual "Sean's Birthday" cold which he's had literally every year since Sean was born, including the actual day Sean was born.

As for me, the pain came and did not disappoint with its severity or duration-- spent 2 Vicodin taking care of it.

I'm currently working on a post that will go up later today, but this post serves a bigger purpose than my apology.

Mental_floss's Morning Cup of Links this morning includes a link to a video produced by the scientists, students, lab techs, and volunteers at McGill University's Goodman Cancer Research Centre dancing to Taio Cruz's "Dynamite". The video is sponsored by Medicom, a company that pledged to donate to the Goodman Centre for every view the video receives on YouTube, so get to watching!

McGill Dances for Cancer Research

New Doctor, New Methods

So I went to my new GP this morning. Well, my new old GP, he was actually the first doctor I saw after we stopped going to my pediatrician after he almost killed my brother by making a stupid mistake when I was six.

So now I'm seeing him again. The GP, not the pediatrician. The pediatrician is dead, actually, come to think of it.

The first thing new GP did was take me off Celebrex, which is crazy weird since I've been on Celebrex for over a year now...but he's right, it's not really doing anything for me and isn't worth the possible long-term effects to my heart. So he started me on Lyrica.

He asked why my old GP didn't put me on Lyrica to begin with since, from my description of my symptoms (the "bugs" and pinches, burning, nerve jumping...), Lyrica is an excellent idea for me. I told him that the other doctor was concerned about my weight, but the new GP, Dr. S, said my weight is really the least of our concerns-- that once I start feeling better I'll be able to do more and the weight will just fall off.

Which is true, really, when I was at the Internship from Hell I dropped 15 pounds like it was nothing. I eat well, I just can't do anything. He also said that since I'm 5'4" by their measure (yeah, I'm suddenly 2 inches taller. Don't know when that happened.), my BMI is 31 which is really only 1 point out of the normal range, which works out to about 10 pounds. Here and I thought I needed to lose 60.

I should lose 60, and I will eventually, but holy crap-- 10 pounds from the high end of normal? Word. Up.

Dr. S also said no more milk and no cruciferous vegetables, which is harsh because I loooove milk (5 English Foods We Need in America) and cruciferous vegetables are some of my favorites (broccoli, cauliflower, Brussels sprouts, cabbage, horseradish)...he said we'll try it for a year, then I can start them again and if I don't notice a difference in the way I feel I can have them back. I whined a little and he said, "Hey, I like redheads, but my wife is a blonde." It made me laugh.

So I took 75 mg of Lyrica and I feel strange...I know something's different, but I'm not sure what. I almost feel a little dopey. It's weird.

My stomach really hurts, and it's not even the real pain yet-- I'm really scared. Dr. S gave me some baby Vicodin, Norco, but only 6. Six days of relief...

I kind of feel like I'm in a fog. Like my head is cloudy. Or...it's even almost like I'm underwater, like I'm moving in slow motion and it's taking things that happen longer to get to me, like the sound from the TV. I've got a little headache, though, so that could be part of it.

--

I might have shattered my mother's brownie dish this afternoon...I'd used it to make some frozen pizza [Dr. S said occasional cheese was okay :) ], and it was so super hot it was burning my hand through the oven mitt, so when I put it in the sink I thought I should run some cold water over it so nobody would get burnt and...well...kkkshh!! Many, many pieces. Many pieces. Oops.

It gave me the idea for a new tag for you, though, so some good comes of it. "Learn from My Mistakes".

Well, more than some good, really, because now I know what to get my mother for her birthday.

Edit: While I was making dinner I also broke one of my ramekins. I have suspended my own "touching things" privileges for the rest of the day, for my own safety and the safety of others and our possessions. It's better this way. Spaz Girl Walking

Pre-Aftermath & Spoons

Apologies about the lack of posting, it's been a rough couple of days.

Janet and Arthur only ended up spending a couple of hours without power, but Mick and Debra lost power Saturday night and it hasn't come back on yet. They've been staying with Deb's mother, but they're coming here for dinner tonight.

My street experienced the worst flooding its had in at least 40 years, the water was waist-deep in some areas, I have pictures and will do a whole post on it later, but not today, I'll explain in a minute. We never lost power, and truthfully, the wind was at its worst on Sunday after the storm had already passed.

From the sound of it, Gayle and Mr. Yikes made out better than even we did.

As to why the real aftermath post will be later, I'm in a great deal of pain. 10 being excruciating, 0 being no pain at all, yesterday was an 8 and I ended up taking a Vicodin and spent the day slipping in and out of sleep. The pain's only a five/six today, but with Mick and Deb and Manny coming I need to hang on to as many spoons as I can.

This is the Spoon Theory and it sums up life with a chronic illness absolutely perfectly. 


Mick, Deb, and Manny are here, gotta go. Wish me luck.

Spaz Girl Walking

No, this is not a video of me demonstrating my klutziness...but it is a story about it. 


September 14, 2009. It was a gorgeous day and I was walking across campus on my way to work. I still remember what I was wearing. My hair was in a bun holder, I was wearing a pair of topaz earrings, my favorite jeans, a white t-shirt with a brown pattern, and a pair of plain leather Keds. 


Alright, this is kind of a secret but I'll tell- you might as well know anyway. I'm a very...intuitive person. I often guess things I shouldn't know, I've made contact with a few dead relatives, and if we spend enough time together I can sense where my brother is and we have, more than once, sent each other messages mentally. Once one of my teachers was pregnant and she had just had an obstetrician appointment the day before where the ultrasound looked like she was having a boy. It was her first baby and she was super excited, and when she told my class I told her she was having a girl. She looked at me like I was crazy, and I don't blame her, but lo and behold a few months later we find out I was right because she'd had a girl. Haha, the boy sitting behind me slapped my back and shook my shoulders because he remembered what I'd said, "You were right! You were right!"


So sometimes I know things before they happen. While I was walking to work that day, just minutes before I broke my leg I was planning the rest of my day: I had class later, when and what I would eat, I was going to go to the gym, etc. But when I had the thought that I would go to the gym my next thought was "No, I can't, my leg's broken." I actually stopped dead in my tracks for a second because it caught me by surprise that some random, untrue thought like that would just pop in for no reason. I shook it off and continued walking. 


My school's campus was essentially one big hill. The building I had to get to, though, was off the main hill, so I had to go down one of the sides of said hill to get down there. There were two ways to do this without cutting through a building (which I ended up doing for the rest of my college career because I'm now afraid of walking down hills, haha); one was to go down the main, paved path that swung out wide and was at a sharp, awkward angle. The other was to cut down the hill over a grassed area with a large willow tree in the center. Very few people going to the building I was going to would take the paved path because it just took too stupid long and the grassy way wasn't at that stupid angle you have to have your knees bent to walk. So I stepped over the row of stones that lined the paved path with my left foot and then--


I don't actually remember this part. There's about 2 seconds there that are a complete blank except for the sensation of falling and hearing my fibula crack. Later inspection of my shoe shows I somehow ended up putting the inside of my left foot on the ground and slid on it, causing my ankle to bend sharply and put pressure against the bottom of my fibula, causing it to bend outward and crack just above my ankle. 


But God, I'll never forget the sound. I crack my knuckles compulsively (and neck and back and wrists and toes...) and the sound of my bone breaking was similar, but deeper in a way. Instead of a sharp crack it was a deep thunk. 


So I sat there on the ground for a minute. Now, I fall all the time-- 10 times since I started college, in fact. Full-out falling. Like, on the ground, skinned knees, torn jeans, people laughing-type falling. And I sprain my ankles. It's another family thing, we sprain our ankles constantly. Our house has more crutches and ace bandages than a hospital. So while I sat on the ground I thought, "That's never happened before." 


Then the first wave of pain hit and I felt nauseous. "That's never happened before, either." A couple seconds later the second wave of pain hit and my eyes burned with tears. "Okay, well, that's another thing that never happened before..." And then there was a third wave of pain, then nothing. So I just sat there on the ground. Luckily it was a nice day. So I waited. The pain pretty much left, so I thought maybe it was like a fluke thing...I twisted it badly or something and I'd sprained it but good. So I decided to move. 


Then came the most blindingly white-hot brain-stops-functioning eyes shut and mouth open involuntarily holy shit I think my mother just felt that and I hope I didn't pee myself Lamaze-breathing type pain. So clearly moving was a bad idea. So what do I do? Okay, well...I just need to get down the hill. Maybe I could roll down the hill, make it to the theater and they'd figure something out? Of course, if I moved during that rolling down the hill there'd be a problem. Okay. So...do I call 911? Could I even do that? "Hello, 911? I'm on my college campus and broke my leg, come get me?" That sounded like a weird idea. Wrong, somehow. I figured I should notify public safety first, maybe they have some kind of protocol thing, I don't know. Stupidly, I didn't have any campus phone numbers in my cell, a situation I rectified sometime after coming out of my Vicodin coma, but anyway, I was stuck. 


So I decided to flag down the next adult I saw. Actual adult, I mean, not a student. Another stupid mistake as the next adult I saw was wearing a suit so I should have realized he wasn't any sort of employee of my college. So I waved to him, and he waved back. 


"I'm sorry, sir, I'm not just being friendly-- I actually fell a little while ago and I think I broke my leg, so I could use some help. Do you have the number for public safety?" This is when I found out he was just visiting the campus (duh, Jo) and didn't have any phone numbers or any idea where the nearest public safety call box was. Luckily two girls were walking by as I was saying I needed help and asked if there was anything they could do, so I sent them to the nearest call box while my buddy, Mr. Suit, waited with me until the P.S. officer came up. 


Mr. Suit was the first person that day to tell me I wouldn't be skiing for a while. 


The P.S. officer asked me if I could move myself, and I said no, and he called in to the P.S. dispatch to call for an ambulance, so we waited for the ambulance while I tried tried to call my mother. I got the answering machine and said, "Hiiii, Mom...uh...I'm currently waiting for an ambulance to come pick me up because...I, uh, broke my leg." The P.S. officer started laughing at that, "So if you could call me back..." 


So P.S. and I were hanging out, waiting for the ambulance when my roommate walked by. "Hey, Mere! I broke my leg!" We talked for a minute before she had to go to class. After she left, I didn't know she did this until like, 2 years later, but she called one of our other roomies to go with me to the hospital, which was really sweet of her. 


They ended up not letting my roomie into the ambulance with me, but I could get her in touch with my mother, at least, which was nice. And, actually, both roomies ended up meeting at the hospital because I had awesome roomies :)


So when the ambulance finally came and I explained how I'm a total spaz the paramedics had to stabilize my leg for the trip, which involved sliding a temporary splint under my leg from my foot to my knee and then wrapping it with an ace bandage. The part about this process that I wasn't expecting, though, was that while the 2 paramedics were working on my leg, they also had two public safety officers (and one of the paramedics helped them while assisting the other paramedic) hold me down. Hard. And I was like, "Guys, this is really unnecessary."  And the paramedics said that it was procedure, because if they jostled my leg and it hurt and I might try to hit or kick them. 


What I discovered during the wait for the ambulance and the stabilizing was that my leg didn't actually hurt. I knew it hurt, in a corner of my brain I was screaming, but unless I moved anything from my knee to my heel on that leg it didn't actually hurt. Like I couldn't pinpoint where the pain was coming from unless I moved, I just knew I was in pain. Herbert's really the only one I know that ever experienced this, only his was with a migraine while he was trying a new migraine medication. 


Then an interesting thing happened. As they were loading me into the ambulance on a stretcher I happened to look to my left, where there were two police officers and a K-9 dog. I remember thinking "What the hell?" I found out later from left-behind roomie that the cops were pissed because the way that P.S. dispatch worded that I needed an ambulance and couldn't move myself meant that, according to protocol, a K-9 unit needed to be sent to the scene when we didn't actually need one. 


When I was securely in the ambulance (strapped down with my stretcher locked in place) my buddy Joe the Paramedic said the magic words, "Do you want pain medication?" Yes. Yes, I did. That began the 8 days I spent stoned. And Joe most certainly was my buddy, as somehow we got to talking about how he's going to be a father again with his new wife and how nervous he was that he was too old for another baby and various other new-dad insecurities. 


So then I get to the hospital and the worst part of the day happened. They cut open my jeans.   My favorite jeans! BAM. From the hem to the knee. Luckily they stopped cutting at my knee because I was still cutting at the time, and I cut my thighs. That was almost an awkward conversation. 


Interesting thing, though, I didn't get my cast at the hospital. They put me in a more solid splint and I had to go to the orthopedist to get an actual cast. 


Oh, and my insurance paid for me to have a bitchin' motor scooter that I powered all over campus and its surrounding areas. I loved that thing. 


The moral of the story is be careful how you walk because one stupid little mistake can ruin your life (See My Story and Show Me Your Teeth). 

Show Me Your Teeth

It turned out Four couldn't hang out today, which makes me nervous...I don't know if he reads this, but I know the thing with my parents upsets him...which is perfectly understandable, of course. I just hope I didn't offend him by bringing it up. Four truly is an important part of my life, and I hope he knows that. 




In other news, my teeth hurt. I'll definitely be bringing this up again as there isn't enough information on it available-- as I found out when I was trying to discover what the hell was wrong with me. I mentioned it in My Story, but it's still bugging me so you're going to hear about it again. 


After I broke my leg I spent the next 8 days stoned out of my gourd on Vicodin. It was lovely. But as I started to come off of it I started noticing I was waking up with brutal headaches, that my teeth hurt, and the muscles in my face, neck, and upper back were sore. By the time I came off of it, full stop, I discovered what the problem was because now I was doing it during the day. 


I was clenching my jaw. 


Not grinding, which gets a lot more attention, but clenching. Constant, walnut-breaking pressure the second I took my mind off of keeping my teeth apart. When I would realize I was doing it I could open my mouth, but I often didn't notice until it started to hurt. I wasn't doing it consciously, like how you don't notice yourself blinking or breathing every second of every day. 


Most remedies are shit. Like "relax" or "aromatherapy", that doesn't do a whole lot. Face massaging helps, but you look strange making different shapes with your mouth while rubbing your temples and the hinge of your jaw in public. Heat helps, so heating pads or tea bags you can stand to have on your face are alright-- I would even, when I got desperate, plug up the sink, fill it with hot water and plunge my face into it for as long as I could bear as many times as I possibly could without burning myself or passing out. 


So I went to the dentist. He suggested a $500 mouth piece to sleep in and my parents said no way, so I got an over-the-counter mouth guard from a drug store, which worked great at night, having something to absorb the pressure. But I was still clenching during the day, so a few months later I went to another dentist. 


We stopped seeing our old dentist because he screwed up on my dad's teeth, so I went to the new dentist. She was no help other than to suggest a different dentist. 


So I went to another dentist. We ended up getting the mouth piece he suggested, a hard, $700 one that I was to wear 24 hours a day. That worked fine for a few months, until the lack of shock absorption led to having a tooth fracture that the first new dentist, the one that suggested the one that I was seeing at the time, couldn't find. That same fracture is sitting in my mouth as I sit here, waiting for the crack to become visible or get infected. Good stuff. 


So I went back to wearing my soft mouth guard at night. A few months later I went on anti-depressants as part of my fibromyalgia program, and the daytime clenching stopped completely. I still clench at night, but not at all during the day anymore. 


Or rather, until recently, but I suppose it makes sense that if my depression is sneaking through cracks in my anti-depressant then of course my jaw clenching would. Doesn't make it less annoying, though. Or painful. 


Moral of this story is to stick to your guns. If you're miserable and you can't figure out what's causing it and make it stop keep looking for an answer, and keep looking for someone to help. The answer's out there somewhere, I promise.