Knots of Humiliation

It's been an embarrassing month here. Dr. S. changed my birth control pill prescription to the much cheaper generic form of Loestrin, Microgestin.

The price is nice, but so far not worth the havoc it's wreaking on my body.

After about a week and a half on the new pills my cheeks, chest, and shoulders formed very large, swollen, and extremely painful lumps-- like boils or something, only they never come to a head, they just sit there deforming me.

And another 10 pounds showed up out of nowhere, because that's what I really needed.

I've felt so humiliated. And I know I shouldn't, really, because these are things I have no control over. My family knows it, sort of, and my friends are understanding, but I can't help but see how I look-- especially to strangers, since they have no idea, and it's not like I can sit everyone down and explain why I look like this.

Which is so horribly superficial...and then that's embarrassing...

Speaking of, the bumps are starting to go away, thank goodness, but there are further problems with the new medicine: it's not working.

The endometriosis pain is back full-force, and by my estimation, right now, I have about 20 minutes left of upright time before I have to lay down for a few hours again.


I don't think there's anything I hate more than medicines that take a while to work right. I know the new BCP is doing something to my hormones so I have to give it a chance to balance out, but it's so frustrating to live through its bull waiting for it to work. Like the Nexium, the Ear, Nose, & Throat doctor (Dr. A.) said it would take up to 6 weeks to see results.

6 weeks? 6 weeks. Great. Looking forward to it.


Luckily it's spring break this week, so it's not like I'm missing out on work because I'm sick this time.


Patience...patience...it took 15 years to get this way, it'll probably be another 15 to get back what I've lost.

It's funny, this whole situation is like a huge knot. A hundred threads all balled up, kinked and woven. Everything's so interconnected and layered you can't begin to work on one part before you've unwound the 12 before it.

I just need to be patient, and keep working on it...one day it'll be better.

Right?

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

Sometimes Right

There's this hilarious site called Not Always Right and it features quotes from the customers of the world who...let's just say they're not always right.

Sometimes, though, sometimes the customer is right. Like today, when the GYN's office finally called.

Naturally, as with all phone calls you're waiting for (or I'm waiting for, anyway), I missed it. The voicemail said, "Hello, this is Dr. Tra-la-la's office and we have the results of your ultrasound. Please call us back as soon as possible at 555-GYNS", so I call right back.

Receptionist: Hello?

Me: Hi, the office just called me?

Receptionist: No.

No? No?! Really. Wow. That's amazing how the voicemail just magically appeared like that 30 seconds ago. Also...how rude!

Me:...uh...yeah, I received a voicemail saying my test results were available.

Receptionist: *annoyed sigh*

I'm so sorry for interrupting you from doing your job by asking you to do your job!

Receptionist: Who called you?

Me: They didn't say.

Receptionist: *clearly irritated* What's your name and who's your doctor?

Me: Plum Jo, I see Dr. Tra-la-la.

Receptionist: Hold.

It was like a command. I was ordered to hold. So held I did-- I'm nothing if not obedient. I held for 15 minutes.

After those 15 minutes a much nicer receptionist told me my ultrasound results were normal (Yay, I think...), but that my primary doctor hadn't sent my most recent blood test results, so we can't do anything yet. Once the doctor gets the blood test results he'll call back with the next step.

THESE PEOPLE CLEARLY DON'T REALIZE THAT THE PAIN IS COMING.

So I called my old primary doctor's office (I'm still in the process of switching GPs as the first appointment with my new one is the 28th.) and left a message for them to send over the results ASAP. Why did I leave a message? Because the records/referrals lady only works until noon.

What the crap is that? People have to wait a whole extra day if they can only make the call during their lunch break? Or if another doctor gets back to you after 12? Harsh.

And as for jerky receptionist up there, it's your job to talk to people and be pleasant. I'm pretty sure this was the same jerky receptionist that, before my first appointment (Natural Disaster Rag), had me announce all of my personal information in front of the entire waiting room. Like name, birthday, social security number, that kind of thing. You know, the kind of stuff that an identity thief is just praying to hear, and the kind of thing you fill out on those new patient forms so she was about to get all that information on paper in front of her anyway.

She also kind of looks like my bitchy aunt.

But lucky(?) for me my credit is in such poor standing that an identity thief would get laughed at if he tried to take out a credit card or something in my name.

Not even kidding, the interest rate on my credit card is 29%. My dad said he's going to close the account to see if he can negotiate a lower rate since technically it's his card, too. Jesus, I hope he can...I'd really like to be able to afford to move out some time before I'm 30. That'd be nice.

Sickness has unfortunately pushed back some pending posts...I don't know why I even bother teasing them anymore, they still never get out in a timely fashion. I'll work on that. Probably tomorrow...

Another Day in Hell

The past few days have been brutal, and as such I'm terrified of the pain that's coming...since this thing changes with my cycle I know I've got a little over a week before it becomes excruciating again and there's nothing I can do about it...from now til then the discomfort's going to grow incrementally until the day comes when it's unbearable. Considering that it's been getting worse with every month that goes by and last month it was so bad I cried I'm really, really scared of what's coming.

I haven't heard from the GYN about my ultrasound results. Chances are that since the CT scan didn't show anything that the ultrasound won't show anything either, but it's still nerve-wracking-- especially since they wouldn't let me see the images during the test so I don't know what the doctor is looking at, I can't be sure there's nothing.

I keep going over the CT images, making sure there isn't anything that the doctors might have missed being too focused on my stomach and intestines, any blip of anything, but there's nothing there.

So then I think maybe the ultrasound got a different angle or something...but if there was a cyst or tumor the doctor would have called right away...but maybe he hasn't even seen it yet?

So then what's next after that? An MRI? Surgery is coming as long as these things keep coming up negative.

I don't know what to do. Do I keep applying for jobs? What if I get one? Can I handle it? How can I be reliable when I know I've got semi-random crippling pain several days a month?

So if I can't work, then what? Disability? That's barely enough to live on...how would I pay my bills? Medical, credit card?

And if I went on disability, would I still be able to write? Like if I open the new blog with ads, or by some miracle I get an agent interested in me?

I'm stressing myself out now. I'm going to go knit and pretend that I'm normal.

Busy Busy Saturday Summary

The past couple of days have been crazy busy for me, sorry about that, not neglecting you.

Thursday was my ultrasound. So here's

Ultrasounding Off: So what with the possible endometriosis, I had a pelvic ultrasound ordered by the GYN. Genius idea, really, when someone is having lower abdominal pain, let's take a stick and jab it around those places that hurt. The conversation between me and the technician went like this

Me: *flinch*

Tech: Are you okay?

Me: Mm-hmm!

...

Me: *flinch*

Tech: Are you okay?

Me: Mm-hmm!

Repeat that 7 or 8 times. I had to keep saying "Mm-hmm" because it hurt too much to talk. And you know what else sucks about those things? The technician isn't allowed to tell you anything. And they won't let you see the screen. So you could have massive tumors hanging off your internal organs, but they can't say anything. Like when I broke my leg (Spaz Girl Walking), I asked the nurse taking my X-rays and she couldn't tell me. She did make a face, though, so I knew, but really. You're scared and in pain, knowing is infinitely better than knowing something's wrong but not knowing what.

--

Friday: I overslept like, 5 hours for going on errands with my mom, but the more pressing matter was a phone call from Debra. It's sad, but I predicted this: Manny isn't doing well in school. I'm no expert, but I'd say his social, life, and motor skills put him at about age 3. I know it's hard to think of 5 year olds as being self-sufficient, but they do need to be (to an extent) in order to be able to handle school.

They need to be able to feed themselves, they need to be able to follow a set of directions, they need to be able to go to the bathroom alone. Manny's having trouble with these things. He's also getting in trouble because he gets frustrated very easily (common with autism) when he has trouble with things. My poor boy, I wish I could hug him. Maybe I can talk my mom into visiting tomorrow.

I also made killer cinnamon rolls last night. Found the recipe here at Whipped the Blog's Ultimate Cinnamon Rolls. Incredible. They were delicious, and I managed to make them without brown sugar (I substituted white) and vanilla (I substituted nothing). I can't imagine how good they're going to be when I'm able to make them for real because these were awesome. And pretty easy, too.

Oh, and my two cents, when you're cutting the individual rolls off the log it's way easier to use the thread than it is a knife.

--

Today: Today I got to hang out with one of my best friends from high school, Linus. Aaaah, Linus is awesome. We had a long talk about relationships and work and family...it was great.

I also picked up a study book for the GREs. Holy crap, I'm going to fail, I'm going to fail so hard. I've got the language part, that'll be fine, but oh, man. The math? Not good, not good at all. Flipping through the book I saw triangles. TRIANGLES. I know the area of a triangle is one half times base times height, but that's all I remember about triangles. Crap.

At least I have the book...

--

Upcoming Posts: Movies based on books has been postponed as Blanc came up with a great idea for tandem movie reviews so we're going to talk about that. The Fight Club & Self Injury post is still coming, I just need to feel good about the final draft. Tomorrow will be the obligatory September 11th post, of course. Also definitely coming is a review of Bridget Jones' Diary, the novel, and I might have a substituting job this week and those are always entertaining.

Stay tuned, it should be a good week.

What Kind of Day Has it Been?

I love days like these...rainy, nothing to do, nowhere to go days. Tomorrow I should probably do a few productive things (defer student loans...order GRE study book...make doctor's appointment...work on room reorganization...shark substitute assignments online...), but not today.

I miss having days like this in college...the girls and I would drink coffee and play games. Those are the days I miss most. It's what we did when Gayle threw that party for Lisa a few weeks ago and it was the happiest I'd been in a long time.

Today was Manny's first day of school, hard as it is to believe. I got a little teary over the picture of him wearing a backpack and holding a lunchbox Mick posted on Facebook this morning. My mother was there when he got home from school...she said he was as unfazed about it as he is about everything...and he's been placed in a classroom with other special needs kids, with two teachers and an aide, but I'm still worried-- we don't know what Manny's place on the autism spectrum is and whether the school is equipped to deal with it. The whole deal is frazzling my nerves.

I've been distracting myself with Regretsy and Facebook games...A&E On Demand...and setting up another blog to publish a trashy novel I've been playing with off and on for a few years-- then maybe others, I don't know, I'll have to see how the first one does if I ever get around to biting the bullet about it. In the meantime I'm going to play with the design templates and ponder about whether to write one or two stand-alone "About" pages.

I'm watching Intervention and this 30 year old girl is sleeping with a 75 year old man that pays for her drugs. Umm...I can deal with that if somebody would pay my bills. How often can a seventy-five year old want it? Damn. Well...what, 68, technically, in my case? Shoot. Steve Martin's 66 and I'd totally hit that. Kevin Kline's 64. I'm game.

Old, wealthy men: pay my bills and I'll seriously consider dating you. Cute, old, wealthy men: pay my bills and I will probably date you. Cute, wealthy men: pay my bills and I will definitely date you.

Just putting it out there. Like that challenge to Microsoft that my 5 year old computer is waaaay better than anything new coming out now. Seamus the Lappy forever.

Today's pain has gotten harder to deal with as the day has gone on...I've got an ultrasound coming up on Thursday. I'd tell you to cross your fingers for me, but I don't know what to hope for. Especially since I don't understand what an ultrasound could see that a CT scan couldn't. If I've already had a more detailed test for the same person, why order the weaker test? Part of me just wants them to cut me open already and dig around to find out what's going on...be sure, whichever doctor I see first (my GYN or new GP), I'm getting painkillers at my next appointment. Be. Sure. I'm not going through another cycle of this pain, I'm not. I don't care what it takes.

And poor Herbert's so sick and nobody knows what to do with him...

Tension headache. Hahaha, this was supposed to be a relaxing post-- what happened?!

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.

What Not to Say

So sorry about the lack of posting these past two days. 


Sunday I tried to post from my phone, using texts, but blogspot didn't mention in the feature that oversized texts couldn't be posted-- which is why, if you tried to view posts I made that day, they were gibberish. I've deleted them. 


So Sunday I was visiting with Gayle and a couple of our other friends as Lisa had come up from Florida. It was a great time, and I really love my friends, but it was a very long day for me and I've been recovering. Hence the non-postage. 


This has been floating around for a while and was posted recently on Deb's Fibromyalgia Blog, and here it is at Care2. I don't think it could be stated any better, and I kind of want to make a line of T-shirts and tote bags with this list on it- "If You're Thinking About Saying ANY of These Things to Me, Please Don't"...or taping it to my bedroom door for my parents to see every day. And I understand and appreciate if you're just trying to help, but sometimes help can really hurt (and we're in enough pain as it is!):


10. We all get more aches and pains as we get older.

The pain of fibromyalgia is much more severe than the normal aches and pains associated with aging. Little things that shouldn't hurt at all can be excruciatingly painful. Plus, most people develop FM long before they should be experiencing age-related aches and pains.

9. I think I have that, too – I'm always tired.

This statement shows a basic misunderstanding of the severity of the fatigue associated with FM. The fatigue of fibromyalgia is so much more than just being tired. It is an all-encompassing exhaustion. You are drained of energy – like someone pulled your plug, cutting of your source of power. It's kind of like taking the batteries out of the Energizer bunny.

8. My friend has fibromyalgia and still manages to work. Maybe you just need a job (hobby, etc.) to take your mind off the pain.

Translation – you must be lazy. The fact is, the severity of FM symptoms varies. Some people have fairly mild symptoms and are able to continue working. Some continue working longer than they probably should because they have no other choice, but they suffer tremendously. Others are so disabled they are confined to a wheelchair much of the time. While getting involved in a project can help to distract your mind from the pain for short periods of time, if you have a more severe case, it doesn't work well enough to allow you to consistently work a 40-hour week. And it doesn't help dispel the extreme fatigue that usually accompanies FM.

7. My doctor says fibromyalgia isn't a real disease; it's just a wastebasket diagnosis.

First of all, this doctor obviously hasn't kept up with the latest research, which clearly demonstrates that FM is a very real, physical disease. Also, to date the FDA has approved three medications to treat fibromyalgia and they generally don't approve medications for imaginary illnesses. There are a few doctors who will tell patients they have fibromyalgia if they can't figure out what is causing their symptoms and just want to get the patients off their back, but I have to question the ethics of a doctor who would do that.

6. If you got more sleep, you'd feel better.

Well, duh! One of the major problems with fibromyalgia is that something prevents the body from going into the deepest stage of sleep, when the body naturally restores and replenishes itself. Even if you manage to stay asleep for several hours, you're most likely not going to awaken feeling refreshed. And most sleep medications do little to help you achieve that deep sleep. They may help you get more hours of sleep, but probably will still not give you the deep sleep you need.

5. I read about this new product that cures fibromyalgia.

This can be one of the toughest comments to deal with because it is usually said by well-meaning friends or relatives who genuinely want you to feel better. The products are frequently some kind of “natural” supplement being sold through a multi-level marketing plan and are very expensive. If those making the suggestions are casual acquaintances, I generally just tell them I appreciate their concern and will look into the product. However, if it's someone closer to me who is likely to keep asking if I've tried the product, I go on to explain that there are dozens of products out there claiming to cure or at least improve FM and I just can't afford to try them all. Read Let the Buyer Beware for tips on how to evaluate product claims.

4. At least it's not fatal.

My first thought in response to this comment is always, “Yeah, but sometimes I wish it was. At least then I'd know there was an end to the pain.” I rarely say that, though. Of course I'm glad it's not fatal. But that doesn't help reduce the level of my pain or the depth of my fatigue. Nor does it help to raise research funding or bring attention to the needs of FM patients. Understandably, people tend to be more interested in preventing death than in improving the quality of life. Maybe I should start actually saying what I'm thinking when someone makes this comment. At least it might get their attention.

3. You just need to exercise more.

Often this is another way of insinuating that you're lazy. This comment in particular has always bugged me. Perhaps it's because I used to be a dancer and aerobics instructor. If more exercise were the answer, I'd be all over it. Yes, exercise is an important component of any fibromyalgia treatment plan, but it's only one part and it has to be approached slowly and carefully to avoid triggering a flare. Read Fibromyalgia and Exercise for more information on how to incorporate exercise into your FM treatment plan.

2. But you don't look sick.

This comment puts the FM patient between the proverbial rock and hard place. If we let ourselves go and show how we actually feel, people are uncomfortable and don't want to be around us. On the other hand, if we manage to fix ourselves up and put on a brave face, no one realizes we're sick. If you think about it, most chronic illnesses are invisible. My dad had heart disease but looked great until the moment he died from a massive heart attack. My mom had pancreatic cancer but looked fine. She didn't even know anything was wrong until it was too far gone to treat. She didn't “look sick” until the last couple of weeks of her life when she was confined to bed. Just because someone doesn't have visible sores or a crippling deformity doesn't mean there's not a serious illness just under the surface.

Ta Daaa...... Here it is - the number one thing you should NOT say to a fibromyalgia patient:



1. It's all in your head.

This is the all-time worst and most insulting thing you can say to someone with fibromyalgia. I used to launch into an explanation of how FM is a very real physical illness, complete with symptoms, etc. Now I simply say, “You're right, it is in my head. Researchers have found that there is a problem with how my brain processes pain signals.” Enough said. 




--


Really, all this can be summed up in just one: trust that the patient knows more than you do. 


And now it's time for a nap!

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). 

This Week's Saturday Summary

So, with the family troubles I got a little behind this week on my planned posts. I'll get to them, just not right now.  I may be able to explain the family thing soon, and thank goodness for that because I'm bursting to tell.

--

The stress of the family thing is getting to me. I've still got that tension headache and my fibromyalgia pain is out of control. My hands hurt so badly typing this- my fingertips as they hit the keys and the muscles in my hands as I move them to type. Aches run up and down my limbs, my lower back is tied in knots, and the bottoms of my feet are screaming from the knives shoved into them.

Every few minutes a random patch of skin begins to tickle, like there's a bug crawling on me-- an ant, maybe, or spider, but there's never actually anything there. Then every few hours one of the "bugs" "bites" me, a deep, sharp, unrelenting pinch in one random place on my body that doesn't stop until it feels like it. Nothing stops it. I just have to wait. It doesn't matter if I cry out or writhe or try to smack the "bug" away or push on it or brush it away; anything to try to remind the nerve what real sensation is...it doesn't matter.

I can't scratch an itch, change my clothes, or shower because the burning of my skin afterwards...it's like fire. If I forget for a second and try scratch an itch, for example, the patch of skin I scratch burns for minutes afterward.

Can you see why, before my diagnosis, I didn't leave my bed? And doubled in size? Also because this situation makes me crave doughnuts like a fucking lunatic. God, I'd pay...a lot... for a chocolate-frosted cream filled...or a glazed cream filled...or strawberry frosted...or, um, anything, really.

So everything is taking a backseat to that.

--

There was fuck all on TV last night so I rewatched The Dark Knight. I forgot how freaking awesome that movie is. Did you know I'm a major Batman fan? Always have been. I used to wake up early every day when I was like, 3, to watch the 60s Batman TV show. My 7th birthday party theme was Batman. I was Catwoman for Halloween one year. The 60s Batman: The Movie was the first DVD I ever bought ($2, baby!). I love Batman. I'm so freaking excited for The Dark Knight Rises, I can't even think about it without smiling, and I feel like hell right now. And I'm smiling.

--

Weren't commercials supposed to stop being so loud?

--

I need to lay down...more tomorrow, of course.

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. 

Still Quivering a Little, and Monkey Hookers

Holllly crap, I've actually got some page views that aren't just me! Hi, people that aren't me! 


Soooo...oh, tying in to yesterday, the No Longer Quivering blog had an incredible article on it that I just had to bring attention to (I'll give it a rest after this, I promise) called "Crushing Daisies: Ways in Which Patriarchal Fundamentalism Harms its Children Part 2: The Little House on the Prairie Fashion Club" (click here for the full article). What a mouthful. In it the author includes a section on what her daughter told her were the effects of the modest dress code enforced while they were living Quiverfull...ly. Quiverfully? While they were Quivering. 

"One day, some months after we’d come out, my then-17-year-old daughter K reminded me how damaged she had felt by this over-emphasis. She told me that in her view it had three significant effects – none of which I had intended to convey. For one, she grew to have an abiding disrespect for men and boys who apparently couldn’t keep their minds away from her private parts. K says she felt disgusted at male weakness and their apparent obsession with all things sexual. For years she struggled even to imagine enjoying a healthy partnership with a man.

In addition to helping us spot like-minded families in a crowd, dressing as we did had served, conveniently, to keep a distance between us and ‘the world’. K tells me that, even though she ended up going to school for grades 11 and 12, and is now happily managing university, for a long time she felt 16 years behind the eight ball when with her peers. Dress and other conservative choices we made kept my kids from engaging with their own culture. In an effort to follow the advice of patriarchal teachers such as Jonathan Lindvall we ‘dared to shelter’ our kids from many things that would help them function in a 21st world.

Finally, and perhaps most disturbing is that K says she grew up believing that there was something very wrong with her body. Having to hide herself away under a veritable mountain of denim, and promptly being admonished when any bits weren’t properly covered left her confused and, she says, appalled at her own foulness. She tells me that, before she even came to the dreadful realisation that God planned a very limited range of life choices for her, she knew she hated it that he had made her a girl. It’s impossible not to connect the dots and see this as a factor in K’s subsequent fight with Anorexia Nervosa."

Wow. WOW. All the hours spent watching 19 (...18...17...) Kids and Counting and marveling at those poor little J Duggar girls it never occurred to me- I mean, I never even considered for a second-

I don't know, I considered myself sensitive to that sort of thing having been through it myself, but it never occurred to me how DAMAGING the clothes are. I mean, regardless of how damaging the rest of it must be, the strictly enforced modest dress code never even crossed my mind. I suppose it's because the Duggars seem so happy all the time. 

I dress modestly- I'm no Duggar but I do, generally, cover up. It's self-imposed, though, is the difference. And, really, a decent portion of the reason why is I do absolutely despise my body. If I don't want to see it like this, surely no one else does, right? So if the outside influence is overwhelmingly "I DON'T WANT TO SEE YOUR BODY" Of course that's how it's going to manifest to a young girl. Or, rather, some young girls...most?...anyway, it seems so logical now that I'm a little embarrassed I didn't  think of it earlier. 

I did, though, grab on to that first part...sort of. The one about men being so sex obsessed...but the thought came in regards to burqas...but not the prairie dresses or the Duggars. 


...I think Jim Bob might be gay. You know, like those "cured" religious homosexuals? Yeah. Just saying. It's a theory of mine. 

Anyway. 

The universe may actually be against this blog. It might be. Point being that the day I started it I wasn't feeling well because a storm was coming- little did I know that it was a series of intense storms that have been coming and going EVERY DAY since I started this blog...um...4 days ago? Whatever. The point is, there's nasty storms here and I don't feel well. 

Herbert gives lovely massages, and while I could surely use one, I don't see him very often. We live six blogs away from each other and I see him maybe once a month...sigh...don't go for the smart ones, girls, they're always too busy. At some point I'll explain more about Herbert, he's an interesting fellow. 

Oh, another from mental_floss for you: Monkey Business. Scientists taught monkeys how to use "money" in exchange for food. The most interesting part of the article, the most interesting part of the experiment, is a little note at the end (the implication of that being, I think, that scientists concentrate too heavily on the experiment they're doing and not enough on the...I don't want to say consequences, let's say..."periphery". They don't focus enough on the "periphery".) that THE MONKEYS EXCHANGED MONEY FOR SEX. Hello! Scientists, hello! Ignore the economics of grapes and Jello and gambling (further experiments they performed), AND LOOK AT THE MONKEY HOOKERS. That's fucking amazing, pardon the pun and French. No wonder they call it the oldest profession in the world- they teach monkeys to use money and BAM! Prostitution. 

I find that awesome. 

Why do I always end up finishing these before I go to sleep? At least today it's for a nap. Mixing things up a bit. 

My Story

No wonder I was so exhausted last night- it's been pouring rain all stupid day. The weather destroys my fibromyalgia...I can be sure that the day before, during, and the day after it rains/storms I'm going to be absolutely miserable with the achy-ness and exhaustion and general pain...my hands are so sore right now I don't really want to type...

But at the same time I do because I've really got a lot to say. I don't know why, really, but I suppose it's a combination of things. See, after I was diagnosed with the fibro I had to leave school because trying to find the right combination of drugs was too difficult.

It's a very long, complicated, whiny story so bear with me because I don't think my holding back details on this thing will do anybody much good. Like in one of my writing classes, a girl had written a short story about her high school sweetheart- all the goofy, cheesy teenage romance crap that was cut short by the boyfriend's drug problem. He'd been to rehab and things were going well but he had to have that "one last high" and, like what happens so often it's practically cliché, that one last high was what killed him. The writing wasn't that great and when I was reading it before the critique I realized it was because of one of two things: (1) either she hadn't ever been through the experience, or (2) she had and wasn't willing or able to really go through her emotions and memories to give it the rich detail it so desperately needed. In class I found out that the story was true, so at my turn in the critique I told her what I explained above, then told her that as the voice of experience she had a responsibility to give her audience- which could include others in the same position- as close to an accurate picture as possible. And I truly believe that. And I know I don't actually have any readers yet, but should someone stumble upon me one day and goes through the effort to find this post and wonder at my...thing. I don't know. Integrity? Maybe.

Forthcoming...ness. Forthcomingness. Whatever. What I'm getting at is that writers- the job of the writer- journalist, novelist, blogger-what have you, the job is to shed light on or provide a different perspective. I mean, from my perspective ;-) , the point is to give people a different point of view than their own. So I'm going to be as honest as I can force myself to be.

(This post is turning out to be much longer than I intended, though I suppose it will be a good reference point in the future [as in, see "My Story" 7/6/11 for the history of my fibro...])

So. Fibro. What I was talking about in the first place.

It's impossible to know which came first: the fibro or the depression, but at one time I was a very happy and athletic little girl. At my busiest I was playing soccer in the fall, ice skating in the winter, playing softball in the spring, and dancing or gymnastics  and swimming in the summer. I was little and quick and light and sporty so I was pretty good at the things I did. I wasn't the best, but I loved running all day and being part of a team.

Things started getting hard when I was about 9, I started getting tired a lot- out of breath easily- and my frequent colds were lasting longer and having weird side symptoms like swollen glands and tender abdomen. I was diagnosed with asthma (thought to be related to the inhalation of airbag powder during a car accident [http://www.theairbagblog.com/airbag-injuries/airbag-chemicals-cause-breathing-problems/]) and Epstein-Barr. Epstein-Barr is the virus that causes mononucleosis, and what usually happens is that someone contracts mono, their body builds antibodies, and the virus is controlled. If, for any reason, the person is exposed to Epstein-Barr again or the amount of the virus in their blood starts to go up, their body just trots the antibodies back out and the patient is none the wiser. This is why people generally only get mono once.

Other people, people like me, for whatever reason, our bodies allow the reproduction of the virus faster than our antibodies can take it on so any flaws in our immune system (food poisoning, maybe, or just not eating right...not sleeping well enough...an infection or cold...etc.) allow the virus to "throw a party" and get out of hand and we, essentially, get mono again.

A few years later, when I was about 11 or 12, I started noticing strange soreness and general discomfort, as well as plunging moods and body image issues. I was ending puberty at the time so I had a lot of weight gain for no reason and a lot of deaths in the family and my failing health- among other things- and I began cutting myself. Slowly I stopped playing so many sports and doing other activities because I was just feeling too sick or getting sick too often to be a contributing part of a team, so I cut back severely on my activities. I still loved softball, though, and when I began high school I joined our school's softball team, as well as playing in my rec league.

My high school's softball teams had a serious problem with a lack of pitchers- and the actual pitchers were immediately put onto the varsity team so this left our freshman team without a pitcher. Having taken pitching lessons in the past I was the best we had. So I became a pitcher and was working hard on pitching. Now, while softball's "windmill" pitch is better for your arm/shoulder/elbow than the hardball overhand throw, but it's very, very hard on your hips. There's actually a lot of "wiggle" involved in the windmill throw, hip wise, and if those muscles aren't built up properly over years and years of practice you can do some serious damage. Like me :-)

What it was, essentially, was a torn muscle deep in my ass, literally. Which isn't so bad on its own, but what made it worse is that, with fibromyalgia muscle injuries don't heal. So this hip problem never really healed, and only became worse over the next few years as other muscles in the surrounding areas became overworked trying to compensate for the one bad muscle. So years and years of this led to spasms down my left leg and into my lower back, sciatica, arthritis, and bursitis. As well as serious nerve damage- I experience diminished sensation in my entire left leg to this day. It's been 9 years and I still have serious pain and issues- I was 14 when I first injured my hip.

In September of 2009 (the beginning of my junior year of college) I broke my left leg while walking down a hill. That's a story in itself and I'll tell it one day...one day. Anyway, after the break I spent the next 8 days completely zoned on Vicodin. It was delicious, I hadn't felt that good in a long time if you can believe it. Unfortunately, I couldn't be on the Vicodin and going to class at the same time, so I started cutting back on the pills. But the more I cut back the more a new problem emerged: I was clenching my jaw, 24 hours a day. Severely. And I couldn't stop. If I took my mind off of keeping my mouth open for A SECOND I would immediately, unconsciously, begin to clench again. The pain was unbearable. This is will be covered in more detail in the broken leg post, just know it was awful and I wouldn't wish it on my worst enemy. After getting little help for a long time I eventually saw a physical therapist who was the first to say I was showing signs of fibromyalgia.

I researched it and found the story of my life. Now, in the meantime, my cutting was out of control. I was cutting 20-25 times in a session, 4-5 sessions a day for years. And that was an average day- those numbers skyrocketed on a bad day with as many as 100-150 in a bad session. I have thousands and thousands of scars on my legs from my hips to my knees. I stopped cutting on October 16, 2009 and I miss it every minute of every day.

I stopped cutting for the boy. I imagine if he ever came across this he'd flinch at my calling him my "boyfriend", so I won't...so I'll just call him "the boy." Or "Herbert." Anyway. Herbert and I had...sort of...dated in high school, then had a terrific breakup, then....got back together? Sort of. That'll be another post. Anyway...Herbert said he couldn't handle my cutting anymore, and that he'd leave me if I didn't stop. I suppose it's like any addiction, I stopped because the consequences of continuing became worse than the benefits of continuing...but I couldn't stop and keep living the way I was. Absolutely not. I was hallucinating from exhaustion, and my nerves were so fried or whatever it was I was getting crawling sensations and pinches- deep, hard pinches all over my body, all the time. My fingers bouncing against the keys of my laptop while typing hurt. No one was allowed to touch me, ever, it hurt too much.

So I went to my GP and spelled it out. He put me on Cymbalta, but that was murder on my stomach. He put me on Pristiq, but that was murder on my stomach AND I stopped sleeping completely (and I got paranoid...and was having severe short-term memory problems, it would have been funny if it wasn't so scary)...now I'm being treated with anti-inflammatories and muscle relaxants. Phew.

NOW...I'm going to bed. :)