It's Not All in My Head

I had a few good days (!!!) last week and, like always, I begin to doubt myself.

I felt good, I was out and doing things, working, shopping, spending time with people I care about, it was really nice. And in the back of my head I was thinking, "Oh, God, I was just so lazy. I wasted years because I was 'tired' and 'depressed' and 'in pain', when really all I ever was was bored."

And I get so embarrassed. And I feel so guilty.

But then, like I always do, I crash. Something like spending 40 of the next 48 hours asleep-- like I did this weekend and have been dragging ever since.

Part of me is grateful for the crash, if only because it reinforces that I'm not crazy. It reminds me that I'm really not in control regardless of how it may seem for days at a time. So in a way it's comforting.

It's amazing how easily the months (years!) of misery can be so quickly undone by a few days of normalcy. "Hey, this feels normal!" becomes, "What if I'm actually normal...?!"

But my body never lets me down. Sooner or later, or very sooner, I'll be back in bed.

Because I'm sick. Not crazy.

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.

Fear and Loathing

If November was bad, December was worse.

What the hell am I going to do? How do I live life this way? It hasn't been this bad since before I started treatment.

I had an appointment with Dr. S. the other day and he said the reason I may be spiraling could be an underlying, un-presented autoimmune disease- the big four of those being Multiple Sclerosis, Rheumatoid Arthritis, Scleroderma, and Lupus. So...you know...good news.

Dr. S. gave me a bunch of Soma so I can spot-treat my muscle spasms, which are on the list of things getting worse. My neck was so bad earlier this month I didn't sleep for a week. I came ridiculously close to melting down.

He also gave me a good deal of Prednisone, a steroid, to help combat any autoimmune issues I may be having. Good news for that is I should know very soon if it will work, so fingers are crossed but not...autoimmune diseases are nasty little buggers and I want no part of them- how do you stop a body from literally self-destructing? Awful, awful mess.

And he took me off the Savella, because it was pretty clearly not doing anything at all. Sigh.

The times when I know I should be depressed but can't be because of the meds are strange. I see commercials or TV shows showing someone as a "loser" or someone without value or a vested interest in life: no money, no job, no school, no future, no hope-- for whatever reason: the one was a guy was eating 80 times more pizza than the average American while unknowingly lactose intolerant and it ruined his school and career and sports. To get his whole life back on track all he had to do was stop eating pizza three meals a day. Logically I know I'm far, far, far more screwed than that, and should, really, be in a pit of despair over being in a horrible situation with little hope of escape...but the drugs keep me in a decent mood about it.

Another example, I'm turning 24 in two weeks-- rapidly approaching quarter-life when I haven't gotten to experience even half of that. It should be depressing. But I'm kind of okay with it.

I've been squeaking out days of work or time with family or Herbert, especially around the holiday, but those moments only serve to underline how much everything else sucks.

Dr. S. apologized to me for having trouble working this out. He said it was embarrassing that all of my blood work is so beautifully clear but I'm hanging on by a thread.

God, I want this mess to be over...I want this mess to be over so badly.

Frustration and Hope

I started working on this post...a good long while ago.

I started this blog under the impression that I could write no matter how I felt. This month taught me otherwise. I spent 12 days stoned out on Vicodin, and the other days working or just trying to keep up with the exhaustion, housework, and the piles and piles of writing I need to do.

This month I watched things fall away, one-by-one, and I didn't have all that much in the first place. Stupid things like Facebook games and TV shows I was too tired for, and big things like my work with Chandler and, once or twice, personal hygiene.

As my pain has intensified and the fatigue took me over my mood plummeted. Why me? Why now?

Through January and the beginning of February I had the best month and a half...the best month and half that I'd had in a long, long time. I remembered how I used to feel when I was young, athletic, enthusiastic. I felt creative and started playing with costume design and for the first time I realized I had talent. Talents. When I could move and breathe and not have to stop unless I wanted to...I felt strong. I felt free. I felt powerful. I wasn't really any of those, but at that point I was, more than I had been in a decade at least. And I could see myself working at getting stronger. I was in a position where I wasn't too sick to grow, much less too sick to imagine growing. I was sad my friends never got to see me like this, never got to enjoy this person...she's a lot different. She can be.

This month makes that little window of time look like a sick joke.

And I'm so frustrated with it...I'm so frustrated...there's an enormous weight on me. I'm literally (and figuratively) being held down by this enormous force and nothing can get it off me. I can't look for work as a receptionist or whatever because I can't work 9-5 for 5 days straight right now-- much less a theater job. I get so angry when I hear someone talk about costumes used in movies or on TV. I get so angry. I get so angry because this thing is holding me down and no matter how much I kick or punch or scream it doesn't move and no one can help.

I worked two days in a row the other week...I spent 8 hours awake over the next three days. I get six to eight hours of consciousness a day, with four to six hours of functioning. Not good functioning, just functioning.

This isn't living. It's barely existing.

So what now?

Well, not a moment too soon, I had a wonderful trip to see a new gynecologist. You heard me. Wonderful trip to the gynecologist. Let that sink in.

She was smart and funny, and listened to me. Made me feel like I wasn't crazy. And talked to me like I was a human being and not a sock puppet like female doctors usually do.

And she said I was probably right about the endometriosis. Again, let it sink in.

She said I was probably right about the endometriosis. After more than six months of people doubting it was endometriosis I had someone say to me, "Everything that you're telling me says 'endometriosis'."

It still could be something different, but as of last Monday my diagnosis is "endometriosis" and not "hypochondriac." (Mystery Diagnosis and Other Medical Issues)

And I'm getting treated for it.

The first step of endometriosis treatment for new doctor, Dr. A., is birth control pills to make my cycle lighter and less painful (Loestrin) -- mind you, "heavy" for me now means I have to use regular tampons instead of light on my one "heavy" day, but the lightening aspect is so I have less of the stray fluid rolling around my abdomen and hurting a ridiculous amount.

And I'm seeing Dr. S. tomorrow to tell him to either re-up my dosage of Lyrica (Side Effects) or move on, because I can't take another month of the elevated fibro while I'm waiting for the endometriosis treatment to do something. I can't.

Sometimes I think about what I'd do if I could. I daydream about running. I fantasize about having a real job and still being able to handle the functions of daily life at the same time. I wonder what it's like to not be afraid to shower because it's not going to feel like razor blades when the water hits my body and the towels won't feel like sandpaper when I dry off. Would I be able lean against the edge of a chair, table or counter without having to flinch away? Could I brush against something and not have it burn for 20 minute after?

At least I still have the strength to hope.

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.

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

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.

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.

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!

Fireworks Daughter

Short post today because I'd like to get my Fight Club post up tomorrow. 

My father, Dan, The Fireworks Man, began shooting fireworks before I was born. He was a member of the prestigious Garden State Fireworks company throughout the 70s and early 80s. He stopped when his friend died, which seems to happen to my dad a lot. 

He has a show today with the company he joined about ten years ago, International Fireworks. I wanted so badly to go to the show tonight, I even gave up hanging out with Blanc for it, because the I.F. warehouse wants to get rid of their stock of 16 inch shells and tonight's venue is one of the few places that's possible.

The larger a shell is, the larger a firework is, the more space you need around it, legally and logistically, space without people or trees or structures. The National Fire Protection Association's code number 1123, the regulations for fireworks displays, requires a minimum viewing distance of 70 feet for every one inch of shell size. So for the 16 inch shells they need 1120 feet of space. 

That's a radius of 1120 feet. You need almost a half of a mile for these things to be launched safely. The largest shell my father's ever seen lit was a 12 inch-er in a show he did. He said that it left a 4 foot circle on the ground, that it pulled all the grass surrounding it towards itself for four feet. The shells they want to launch tonight are four inches larger. 

Average shows consist of mainly three to six inch shells. The biggest shells in average shows are 8 inch-ers, and there's usually only a dozen of those, if that. 

I hope they don't do it. I hope it's not tonight. For one thing, it's a gigantic fucking bomb they want to light, three times the size of the bombs they usually handle. And because I rrrrreeeaaaallllllllllyyyyy wanted to see it, but I'm not well enough to go. 

Good show, boys. Come home with all of your fingers and toes. 

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.

Storms Brewing

What a terrible day.

I was supposed to hang out with Blanc again today, but I turned off my alarm in my sleep. I should have just stayed in bed, but I didn't.

It's been rainy so I was achey and tired (stupid fibromyalgia...always when the weather's bad), but when I went downstairs to get something to eat my mother informed me that a situation that's been brewing in my family had come to a head after 3 years of waiting.

I wish I could explain, I want to desperately, but I can't just yet on the off-chance that a family member stumbles across this and gets the wrong information because nothing's been resolved yet.

Suffice it to say that the situation is heartbreaking and as soon as my mother told me the new information an iron fist grabbed a hold of the back of my neck and stretched up the back of my head with a killer tension headache.

One day I'll tell the full story, but I just can't right now. Tomorrow I'll have a real post...for right now I'm just going to have another glass of wine and watch some crappy TV.

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. 

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. 

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. :)