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?

Back in the Saddle

What an incredible few months it's been- especially these last few weeks have been like coming out of hibernation.

Dr. S., my general practitioner, felt like we were hitting a wall with my treatment as nothing we were doing was helping me at all. I was sleeping 16-20 hours a day, more when I had worked the day before. I could only work 2 days a week because any more would leave me completely wiped out, like I said in Fear and Loathing.

So I was on Prednisone for most of January, which helped somewhat, but Dr. S.'s most important suggestion for the month was that I should see another rheumatologist. Preferably one that wasn't a complete moron and pervert like the last one. So I go to see Dr. K.

When I explain the situation to Dr. K. she says, "I don't believe in fibromyalgia."

So I said, "Yeah, I don't think this is going to work out."

To which she responded, "A few years ago I was named the top fibromyalgia doctor in the Philadelphia area."

Perhaps she should have led off with that.

She went on to say that all cases of fibromyalgia have a cause and that doctors tend to use the diagnosis of fibromyalgia as an excuse to stop looking for that root cause- especially since there's such a huge market for drugs that do help a significant portion of the people with it.

We talked about how those new fibro treatments- the Cymbalta, Pristiq, Lyrica, Savella- none of them worked for me. What worked best was anti-in

flammatories and muscle relaxants. When we started talking about my old injuries things got interesting.

We talked about my bad hip (My Story), my broken leg (Spaz Girl Walking), the sprained ankles, tendinitis-es, pulled muscles, the nurse-maid's elbow I got as a little girl.

"Hm." She said. "You sound hypermobile. Can you t

ouch your thumb to your arm, on either hand?"

"Both," I said, demonstrating:

Then she asked if I could touch my palms behind my back with my fingers pointing up. "Easily."

She put me through a few more positions, all the while saying, "Yeah. Oh, yeah. Oh, boy." My hips in particular made her wince.

So it turns out all my joints are applesauce. And my body hates it.

She diagnosed me with Benign Hypermobile Joint Syndrome (my Beighton Score is 7/9)-- though they're trying to drop the "benign" from the name because, while some people can live their lives never even knowing they're hypermobile, there are people like me whose lives it ruins. But being as my case is rather severe and I have a number of the other symptoms, the hypermobility could be a result of Ehlers-Danlos Syndrome. We're starting the process of testing for that...more fun. I don't want to talk about that though, really, unless I have it...I'm honestly too scared.

Anyway, we talked about how I was once athletic. How, once I feel healthy enough, I immediately start exercising again until the universe decides to punish me for it-- my hip, my ankle, the endometriosis. She said I never would have broken my ankle if it hadn't been for the hypermobility-- that a normal person's tendons would have been able to hold their ankle in place instead of just letting it flop over and snapping like mine did.

She also told me to never tell doctors I have fibromyalgia because after they hear that word they'll never listen to me. "Your nose could fall off your face and they'd blame it on the fibromyalgia. When you're having a problem don't ever let them give you that as the reason." I immediately thought of the endometriosis battle, specifically Mystery Diagnosis and Other Medical Issues.

I have an appointment with a physical therapist coming up, Dr. K. said he'll be able to help me re-learn how to move in a way that's safe for my joints and build up muscles that will help the stability of my joints so they don't hyper-extend and strain other, related muscles. She said I could make a full recovery.

But I'm not so sure. Hypermobility doesn't explain why my muscles refuse to heal when injured, and my chronic muscle spasms and pain. Don't get me wrong, hypermobility explains a lot of things about my life, both now and in the past, but it doesn't explain everything. Hypermobility may be the cause, or one of the causes, of my fibromyalgia, but I don't think the hypermobility actually IS the fibromyalgia itself-- if that makes any sense.

So now there's more waiting. Dr. K. also me off the Lyrica, which has done wonders for my energy level, but the withdrawal has exacerbated my muscle spasms. That's been fun.

But I am most definitely back. There are a number of good posts coming up-- I've gotten some great ideas during this hiatus. More good stuff coming soon, I double promise.

Take care of yourselves, always.

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.

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.

Bleeeggh

Three things can be counted on to make my pain worse: stress, weather, and my cycle.

My credit card has been suspended (thanks, Bitchface!), I'm going to get my period in like, 3 days, and we've got thunderstorms today-- a nice little prologue for Hurricane Irene.

Irene's looking like a real bitch:

I need another nap. I hope to have a better post for you tomorrow-- definitely by Saturday, but after then who knows if our house will have power, let alone internet. We'll just have to wait and see.

Batten down the hatches, kids. Stock up on water, non-perishable food, and candles. Be safe.

Just Keep Swimming, Just Keep Swimming

I make it a point to be as honest as I can on here because if I'm going to lie I might as well not post...it doesn't do anything to help me and it certainly won't help anybody else who could be going through the same thing, for sure.

So here it is: I'm a 23 year old virgin that's having her first gynecologist appointment tomorrow to see if the symptoms I'm experiencing are due to endometriosis. And I'm freaking terrified.

I'm kind of glad for my stomachache today. It's not bad, but it's a reminder that it's a problem and that next week or so it'll be much, much worse, and that's why I'm doing this. It's why I have to go. I have to find out what this is and get it treated, if only so I can wear my clothes again.

Wear my clothes again? Yeah, wear my clothes again. My abdomen is so distended none of my pants fit because they're too tight in the waist, and none of my shirts fit because they don't go over my 5 months pregnant looking belly. Clothes that fit well enough 20 pounds ago don't anymore.

I'm doing my best to get ready, but there's so much to keep track of: different symptoms, different dates, different appointments, different medications, different procedures...I mean, I started noticing something was weird in February-- it's a lot to keep track of.

And I know the anticipation is much worse than anything that's going to happen tomorrow, but goodness knows that knowing that doesn't mean a thing in terms of anxiety. The nurses that take my blood pressure always comment on how fast my pulse is...I tell them it's because I never got good news in a doctor's office. They laugh, but it's true.

In fact, it's one of the reasons I took so long about getting to the GYN-- it was the one thing that never had any problems. Never a yeast, urinary tract or bladder infection, I'm not sexually active, my periods (were) light and regular with very little cramping (I'd just be really hungry), and there's no history of any kind of gynecological disorders in my family. So why go?

You know how nervous I am? I involuntarily shuddered earlier. Like an actual shudder.

I'm going to have a cup of tea...I need to relax.

Maybe I'll have a glass of wine with breakfast. I mean, really, it's just grape juice...

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!

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?

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

More Addiction

Russell Brand published a very moving essay about his friendship with Amy Winehouse and the nature of addiction, and how the way addiction is treated needs to change. It can be found here at The Guardian, an English newspaper. It's a good read, even if you weren't a fan of Amy's or Russell's; the emotional honesty is refreshing and the portrait of addiction is accurate. 

I wonder what the tipping point will be, what it is that finally convinces us to take a serious look at how we treat addicts. It's terrifying, though, knowing that more people are going to lose their battle before that happens. 

Things like this make me wish I were in a position to change things. I consider politics every once in a while, and I know my dad is all for it. So much so, in fact, he occasionally suggests I join the military and I generally respond by staring at him with a look that says, "You're batshit insane, man." I could never, and I would never. I don't drive a car because I'm too afraid of killing somebody, and my dad thinks I would be able to tolerate being trained to kill?

Don't get me wrong, I'm not against the incredibly brave and selfless members of our military in any way, shape, or form. What they do for us is incredible. I'm just saying I couldn't be one of them. 

I also don't think I could handle basic training in any way. 

Not the point. 

I'm not even sure of my point, actually. 

I guess what I'm trying to say is that if I were to run for office I would try to influence change in how addiction is viewed and handled. Our current plan of attack is clearly not working and something needs to be done. 

According to a little noticed January report from the Centers for Disease Control (CDC), drug overdoses killed more than 33,000 people in 2005, the last year for which firm data are available. That makes drug overdose the second leading cause of accidental death, behind only motor vehicle accidents (43,667) and ahead of firearms deaths (30,694).

Stop the Drug War - this article includes the quote above and some very interesting information regarding current addiction treatment. 


And yes, as a person with chronic pain, I am 100% for the legalization of marijuana.