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?

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.

But Wait, There's More!

Yeah, there was something I didn't tell you in yesterday's post.

I had an appointment with Dr. S. Monday morning. Just my regular monthly appointment (more like 6 weeks now, go me!). But my dad's had a nasty cold all weekend, and Monday morning I woke up with a little sore throat. Knowing how my body handles colds, I mentioned this to Dr. S. at my appointment, hoping to get some antibiotics so I wouldn't have to go back in a couple days just to get them then.

So Dr. S. is feeling my throat and he hits an enlarged lymph node in my neck. I tell him it's been there for 10 years and is named Henry, but this isn't true because it's actually been there for more like 15 years and is named Henry. My old doctor knew all about Henry and said it wasn't anything to worry about because he had a node, too, that never really went away and was perfectly fine.

Dr. S. doesn't care, though, and says that the ear, nose, and throat people upstairs take my insurance and will take me right away, just to get it checked out.

So I go upstairs and they rush me past the many, many people waiting that gave me many, many dirty looks (which I totally deserved, I felt so guilty) to see Dr. V., who was incredibly sweet and gave me a full EN&T exam. My ears were normal (oh, yeah!), and my nose was mostly normal, but apparently I have a deviated septum. I was like, "What the hell?" and Dr. V. said as long as it doesn't affect my breathing we don't have to do anything about it. Thankfully it doesn't affect my breathing. Hallelujah.

So then he gave me a throat exam. This included sending a camera up my nose to get a gooooood look.

Good times.

Dr. V. asked if I got heartburn, and I said no, because I don't. He said my esophagus was really red and inflamed from Acid Reflux Disease. Then he said we should get a CAT scan of my throat and if the results of that aren't what he wants, then the next step is a needle biopsy. More good times!

The whole thing seemed so ridiculous. I was going to just take my prescriptions and be like, "Yeah, thanks, see ya later." and never fill them.

But then I looked up acid reflux disease and it turns out I do have a number of the symptoms, just the less obnoxious ones. So I still considered not doing anything, because another pill is another pill to take, more medication floating around my body, and more money every month.

But then I read that untreated acid reflux can lead to esophageal cancer.

My uncle died of esophageal cancer a few years ago, five tortured months after his diagnosis.

Yeah, I'm taking the damn pill.

The whole thing came on so fast, I was really confused and upset for a while there. It's better now but at first it was just...crushing. "This, too, shall pass" applies to good news, too.

And I've still got that stupid sore throat.

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.

Happy Birthday to Me!

Somehow, somehow, I made it to 24.

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.