Ready to See Other People

While chatting with a girlfriend of mine on a drive, I came to a realization.

Let me back up a bit.  A few weeks ago, we (Sky King and myself, as he goes to all my Rheumatologist appointments with me) saw Dr. W.  Among my growing list of concerns was: recent hair loss (which he told me is not of the "alarming" variety) and increased pain in my hips, elbows and wrists. 
After we talked for some time, he told me that I did not have Rheumatoid Arthritis (even though my blood work shows "positive" for the Rheumatoid factor, and I have a family history of RA).  I then said, "Then, why do I have this pain, and what are you planning on treating it with?"  His response was, "Your pain, I believe, is Fibromyalgia, and I am more concerned about you getting your depression and anxiety under control."  Me:  Fine, but what are we doing about the pain in the meantime?  Him: You need to address the underlying cause, which I believe is depression.

Me:  :::sigh, which buys me time and allows me to have an internal battle in which I conclude that, the hospital is far too big, and the car is far too far for me to stab this man in the side of the neck with my #2 pencil and get away, plus I wouldn't get my parking validated:::
So, if my underlying problem is depression, which I have been treating for 11 months, then I have to continue to treat it, in a new-improved-and-yet-unexplained-by-you-way other than medication, weekly therapy, intense self-reflection and a complete and utter annihilation of the way I used to live my life?  Do I understand that correctly?
Him: Yes. I think.  There were some run-on sentences there.  But yes.  You will eventually have relief from fibromyalgia, once you are effectively treated for depression.
Me: Mmmmkay.  No.  That is not okay with me.  I want to be treated, and I am feeling very frustrated that you are telling me that I am not working hard enough on the thing that I DON'T think is the primary problem, and I feel that there is something else wrong.
Him: Well, I just don't think you have anything but fibromyalgia, and depression.  To prove it to you, I will give you 5 days' worth of prednisone. Which won't work.  Then, you will magically believe me.
And so it went.  I AM paraphrasing, to be precise.  But if he didn't say those exact words, he certainly meant them.  And on my ride home with my friend, I read between the lines of what he did say-with my friend's help, of course.  Here is a translation:

I don't believe there is anything wrong with you at all.  I think it is all in your head, and I think that your tests are kind of normal, which is pretty much normal in my book, and you are one of those people that love to pay $20 copays to see specialists for something that is made-up.  I think that if I can get a psychiatrist to dope you up on enough drugs, eventually you will feel "cured", and I will continue to pay off my student loan payments, while your kidneys and liver wither on the vine, taxed to their capacity.  You will probably try some other drugs coming down the pike too, with varying side effects.  But I got student loans to pay, and frankly, I'm pretty pissy that you spend your free time researching your illness and symptoms on Google, and so I will make you pay.

I know that seems like a lot to get from one look from a doctor, but I'm pretty perceptive. 

You see, the thing is this: My own FUCKING THERAPIST laughed when I told her Dr. W thinks my PRIMARY problem is depression.  Yes, I'm depressed.  Yes, I have always had a roller-coaster emotional state.  I have big highs.  I have some crummy lows.  But not sit-in-a-corner-with-a-rusty-razor-blade low.  Not unable-to-get-out-of-bed low.  At least, not until I had this UNRELENTING PAIN.  And now, I have a doctor I see every goddamn week agreeing that the thing she is seeing me for, is NOT my primary problem!  The man I love, the man who has seen me through almost every year of my adult life, agrees that depression is NOT the primary problem. And believe me, if anyone would know, it's him.

Also, the prednisone made me feel like a freaking rock star.  No pain.  Tons of energy.  Then, I went off it, and had mind-blowing headaches for 5 days-but the pain was still gone, and the energy remained.  When the headaches left, so did the energy and now the pain is back, ready to make up for lost time.  I messaged Dr. W who remarked, Hmmm, that's confusing because your labs came back normal. Waiting on more results, will be in touch.  Dr. W?  I am no longer impressed.  You could have 47 initials after your name, and you are still a big fuckwit. I can learn more about my own goddamn health watching daytime TV.  And it doesn't sound like I could do much worse than you.

Here is my realization:
Dr. W is brushing me off, dismissing me.  He is giving me the doctor-patient equivalent of "it's not you, it's me".  He's screening my calls.  My name has been deleted from his cell phone. 

I got news for him.  They say that happiness is the best revenge, despite the strong urge to find his home and write grammatically correct but anatomically impossible suggestions on his lawn in grass killer so it will be spring before my message is fully realized. No He's all mine and he's got nothing but time. I hear he has an open mind-likes to try new things. Sky King and I can't wait.

Here's to everyone's dates this weekend going well.

Health Update for November 2011

Normally, you can count on all kinds of awesome funny stories about the craziness I birthed, or the hilarity that ensues when I am allowed out on a pass to traipse among normal humans. Sadly, this is not one of those posts. But I will swear a lot. As in, Dear Mother-in-law, this is NOT the post you want to be reading.  Seriously.  Go see what Mimi is doing or something, maybe she needs the new People issue.  But, if you DO read this, don't judge me.


Fucking fuck.  That's how I feel about today.  That's how I feel about my stupid stupid dummy-head doctor, and that's totally how I feel about fucking fuckity fibromyaglia.  Except with more F-words.

Lemme back up.
Every time I visit my Rheumatologist, I go prepared. Sky King accompanies me, I take a list of current meds, and I have a list of shit I want to end.
This time, it was:

List of Concerns:

• Hair loss, noted by myself, and my hair stylist--now, we're not talking "hot pink hooker wig" loss.  just noticeable thinning. Irritating, and doesn't seem to link to a particular med I take.
• Fatigue. I'm sofa king tired, I can't even stand it. (HA! Get it? Can't STAND it? 'Cause I wanna lay down? Nevermind...)The sleeping meds I take make me feel like I had two scotches for breakfast, instead of a gluten-free LaraBar. Which sucks, because I commute on the days I have energy to deal with work.
• Pain.  Motherfucking mind-blowing pain, that means sometimes I have to choose between playing Angry Birds, and feeding myself.  Sometimes the birds win. Sometimes the spoon into the Gluten Free Dairy Free frozen dessert wins. Which is why my weight loss is, shall we say, a tad non-existent lately. Fucking sue me, I'm in pain.

Then we go over all my meds and supplements.  My sleep Dr., Dr. F, added mirtazapine for sleep, which was new to this visit. Dr. W-the Rheumatologist-wanted me to check with Dr. F to see if I could halve my dose. Then, I told him I was taking 5000IU of vitamin D.  He said, "Okay.  Who prescribed that?"  I responded with "Google".  This did not go over well.  Apparently, self-diagnosis and self-treatment are not his favorite patient habits. Because of this, I expand. Ha.  I know shit, motherfucker.  I can READ.  And I'm doing shit about it, homie.  Put THAT in your pipe and smoke it. He pretends to ignore me, and I pretend to not blow him into bit in my imagination.
Moving right along...
Then we talk pain.  I explain about the wrists, the elbows, the hips.  The knees, too. I tell him that it is bothersome, and daily-life-hindering.  I tell him that some days, I have trouble holding the steering wheel. I tell him this is not okay with me, with the whole own-a-business things I got going.  You know me, and my silliness with that income thing. Apparently, he does not understand the realism in my voice, because he does not immediately offer a hopeful explanation. Instead, he asks about my mood.

"Grumpy" does not even begin to scratch the surface of the state of my mood lately. Not only am I not supposed to work too much, do fun stuff too much, or extend myself in any way, I also need to be mindful of my body mechanics and take note of triggers, gobble pills all day, spend hundreds a month on co-pays for sleep doctors, acupuncturists, head doctors (and not the voodoo-y problem-fixing ones), Rheuma-whatever doctors, primary care doctors, neurologists, and whatever else. All while reducing my stress...during the holidays.  Which is stressing me out. He says he understands. But his lack of prescription writing for the perfect drug is telling another story altogether.

So he leaves it like this:

Hair: fine, in terms of loss-not the kind of loss that would be the sign of something bad, so suck it up, Rapunzel.
Fatigue: It has only been 2 weeks on the sleep med, and if I have been having poor sleep for a year (possibly since I was 12 when I was first told I ground grinded teeth-clenched into dust at night) it should take at MINIMUM a month to see marked results.  Keep at it, follow up with the doc over halving the dose.
Pain: Here is the kicker.  He thinks it is fibromyalgia, rather than Rheumatoid Arthritis.  Which is good, and bad.  Good because fibromyalgia won't shorten my life. Just make it an angry bitch. The meds suck, and don't help much with pain.  Now if it is RA, that shit is degenerative. My blood work shows the possibility. The meds out there will help the pain. But.  The meds suck. The nicest of them is prednisone. The yuckiest is chemo, among others. So praying for "not RA" is the key right now.
Mood: He thinks my biggest problem is anxiety and depression.  i tell him, "Yeah, NOW it's my biggest problem. You just pretty much gave me no hope, dude.".  I get that I have a tendency towards depression. I get it, I accept it.  It's a bitter pill to swallow (I can do this all day, folks.  ALL. FUCKING. DAY.) but my health is NOT making it easy.  Fine, give me a pill or five that makes me happy I can't fucking eat, use the computer, smack my kids around, whatevs. But shit, really???? That's my PRIMARY problem???  Because people should take the inability to walk without a limp upon standing EACH TIME I STAND, FOR UP TO 10 MINUTES in stride. Umkay.  I think this kind of can't-do attitude is what makes doctors have unlisted numbers.
I even have a T-shirt planned. I'm going to Zazzle it. Then, I will wear it to all subsequent appointments-every 4 month follow-up.  It's gonna say,
"I went to see my doctor, and all I got was a 3 hour lab wait and referral to psych".
Catchy, no?

I leave, feeling defeated. If I have RA, they can treat is aggressively, but the drugs may cause some shit I can't even fathom. If it's not RA, this fibro bitch gets upgraded to "flaming whore" status, and I have to find some other way to cope that is A) do-able, B) not pain meds that destroy my already taxed liver and C) does NOT involve copious amounts of kicking puppies, which is what I want to do. It's not so much the "puppy" part, more the "kicking" part.  The kick has to be satisfying, though. Kicking a wall, or a fluffy pillow ain't the solution.

So, I feel like cussing, and crying.  Sorry I wasn't funny today.  Tomorrow will be better, especially with all these mental health issues, I'm sure of it.

How Ya Feeling?

 Recently, I have had people inquire if I am feeling better.  Which made me realize most people don't understand fibromyalgia.

It is not like other conditions or diseases-it's more like a roller coaster than a steady decline, or a bad spell followed by recovery.  And, it is different for each person.  Everyone has different aches and pains, different side affects, different reactions to medications. I have read accounts of other people that have it on blogs and yahoo groups, Facebook and real books.  I actually consider myself fairly lucky, in terms of the symptoms I have, the support system I have, the job I have.  Which does not mean I don't know how to throw a humdinger of a pity party though.

Here, in a nutshell, is what it is like to be me, with fibro.

Each day I wake up, after a not-very-restful-night of sleep.  I get out of bed and take a few agonizing steps until my legs begin working (which almost ALWAYS happens) while I assess my general body. By the time I have walked the 9 steps to the toilet, I have figured out what, if anything, is hurting (my therapist wants me to keep a journal to figure out any trends).

---At the beginning of my diagnosis, my husband and I would try to figure out what each ache could be attributed to.  This is futile, and depressing, because ultimately, you might hear your significant other say, "Maybe you ate too many shrimp this past week", or "Well, you DID work 5 hours yesterday", and then you get more depressed. See? Useless.---

So, I just make a mental note, then go on with the morning.  Pretty quickly, I figure out how things are going to go.  Some days, I wake up with energy and a happy body (and I will in no uncertain terms ruin that all by overdoing it, to take advantage of feeling so great...), and other days either my body, my mind or more spirit lets me know they are NOT on board with the plans for the day.  Even if those plans are just to get up and not swear at the kids. (Can you tell which things failed me THIS morning? Yep, body AND spirit-sorry about the grumpies...).

Each day is a complete reset. Yesterday usually doesn't have much to do with today.  Unless I overdid it.  Then, I will pay, except on the rare days I don't. See?

Remember the Spoon theory?  Each day, you have so many spoons.  Each spoon represents your ability to do things, like take a shower, call a friend, drive somewhere.  Once you spend all your spoons, you are done for the day, regardless of when you run out of spoons.  And, the number of spoons you wake up with is not predetermined. There's no way to know how many you will wake with.

Some days, I have tons of energy, and a little pain. Some days, no pain.  Some days, tons of energy, and tons of pain. Or, I feel fine (in my body) but I am grumpy, uncomfortable in my own skin.  Yes, I know, that is called depression.  I have it, been diagnosed with it, being treated for it.  It comes with Fibro.

And, my worst pain (usually) is in my arms-typically my elbows and wrists, sometimes hands. I know others that can't stand the leg pain. Or, back pain.  Each person is unique.

So, when I am having a good pain day, it unfortunately has no bearing on whether tomorrow will be a high pain day, or low pain day. Sometimes, the pain is hard to localize. Meaning, my body just has a low-level ache that encompasses everything. 

The mental aspect of it sucks too. Not only do I have a raging case of fibro fog-short-term memory loss-but it all really bums me out.  I mean, I know i have stuff to be depressed about, but normally I'm a pretty upbeat person.  And, sometimes the mind kind of takes over.

Most of all, I think about my body and my health almost all the time. I know that is not healthy, but I also know that it will ease up after some time. My husband keeps telling me that once we get through our first year since my diagnosis (Jan 2011), we will know how we navigated each thing we do, each weather change, each family gathering, each week. From there, I am hoping some of this will begin to come naturally.

Today, I had a great chat with a former colleague who found out she no longer has MS.  Yep.  NO LONGER HAS IT.  Her doctor said that he now believes in miracles.  One thing she said stuck with me, and that is that she never wanted to BECOME her disease. So, she told almost no one. Then, when she found out she didn't have it any longer, she realized despite her best efforts, she had become her disease.

I have become, for now, my fibro. My Reynaud's, my RA.  It's all me.  The person I used to be seems to be gone for now.  You know the one-the one that did so much, accomplished tons, was busy busy busy, and crammed everything she could into one day.  I would partially swallow, just to bite off more.  Now, it seems as if showering AND shaving, along with one trip to the store, and one doctor's appointment is TOO MUCH.  And right now, this crap seems to have taken over my life. I know that this, too, shall pass. One day, I may find that, even though the pain is not gone, I do not obsess about each ache. I will go through my days like they are normal, skimming over the discomfort, adapting to each number of spoons as if by rote.  I will be able to see the positive in everything more regularly, and my posts will be more about how awesome everything is, despite fibro. Not about how crappy everything has become because of fibro.


I do know that this year will come to an end.  I will look back, and I will see a lot of change, a lot of pain, a lot of hurt, and a lot of knowledge.  I hope that I can look upon the year and be thankful, more than filled with remorse for the life I have left behind.  I hope that I can dream of a day when all this is behind me, when the fibro is gone, when I can choose to tackle too much, plan a lot, be busy, if only for a brief time.
While I miss my old, pain-free life, my quick mind, my seemingly boundless energy, there are things I do not miss.

I don't miss being so busy.  I don't miss checking my calendar, only to note that I obligated the entire family to too much, and there is no room in our schedule for a bike ride, a spontaneous dinner with friends, a last-minute opportunity.

Support Groups

It has been RUFF lately.  I have been grumpy, I have been moody, I have been busy.  I'm so NOT a fan of my current sitch.  I don't mean to complain (Yes, I DO!), but this shit has gotta AT LEAST take a break. Even dictators need a little vacay, why can't health problems?

Here is what I would do if my fibro went to Hawaii for a week:

I would eat and drink til my heart's content.  Pasta, all kinds of fabulous cheeses that I can't pronounce.  And, each meal would have wine, perfectly paired, to each course.
I'm thinking:
Pinot Grigio with a salad of feta, spinach, toasted pepitas, dried cherries
Sauvignon Blanc for the fettuccine alfredo with seafood
a spicy Zin for the filet with carmelized onions and gorgonzola
Something light and dessert-y to go with the chocolate lava cake (I KNOW, so 2005, but it was the most popular over-served dessert for a reason, folks)

I forgot hors d'oeuvres-----
Chik'n Biscuit crackers, salami and spray cheese, accompanied by peach wine coolers.  Or berry?  Maybe the sex on the beach ones.  I always get stuck when pairing chik'n biscuit crackers, I can't remember the rules....

Anyways. After the gorging, I would do all the things I love to do: I would read a great book from beginning to end without stopping (no stopping to walk around and stretch my legs, rub my achy hands, nothing!)
Then, scrapbooking with some other scrappers.
Camping-sitting by the fire eating s'mores, drinking too much, telling stories, going for hikes during the day, watching the kids enjoy nature.
Something out of the ordinary-jet skiing, zip lining, something that will get my blood pumping!
I would also spend a day running all my errands-I would get them all done, and NOT be completely wiped out at the end of it.
I would not take any meds, any vitamins, nor would I visit a single doctor. My week would not be ruled by my health or my limitations.

I could go on for hours, but I won't bore you with my fantasies.

The other night, I was DONE.  Done and done.  I was coming off a flare-up (3 weeks, ugggh) and grumpy as all get out.
I came home, SK said, how are you?  We walked and talked, getting situated for the evening, closing up the house, etc.  I turned to him, and said, "I'm not okay." We sat down to talk and the flood gates opened up. I whined about always being sick, everything being centered around me and my health and how much I hated it, even though I new it was necessary.  He listened (as he always does, man, I'm lucky) and offered up words of encouragement, tried to help me figure out what caused my feelings (Maybe you are stressed with family coming to visit, Maybe you're premenstrual (Really, this does not make me want to kill him, somehow he manages to make it not irritating), Maybe you have still been working too much) when I just got sick of not knowing what is really, fully, wrong, what are the triggers ('cuz 12 hours of work a week is too much to bear...), just sick of the whole thing. (You would think weekly therapy AND a fabulously supportive husband would be enough, but I am SO NEEDY!)

I cried, cried, cried.

Then, SK offered up the concept of a support group.  I found one that meets the last Saturday of each month, about 10 minutes from the house! And, I found a yahoo group, and a facebook group.  So, all in all, I have found some places full of supportive people that HAVE BEEN THERE.  They know me, my story, my situation, like no one else can.

I am feeling positive about this potential piece for me. I will keep you posted!


UPDATE:
I found fibrohugs on facebook, and already made a few friends.  I found a Yahoo group, and have refrained from commenting for now, as they are watching my every move. They say it is to keep spammers away, but I think it might also be a mental illness screening tool, so I'm being extra careful.  AND!!!!! The fibro/CFS group is awesome!  I'm not alone!!!!  They are nice, and helpful, welcoming, etc.  All the things they should be.  More soon!  TTFN

Why am I here?

Well.  Ahem.

I have not been real honest with you.  I think it is time I came clean.

I don't blog for you.

I am a fairly selfish person, and I don't want to shell out more $20 co-pays than necessary, so I thought that blogging would give me an outlet that I needed to get through some of this crap I got goin' on.  Well, okay, maybe I thought I could also help others going through the same blah blah blah.
So, I enjoy writing-I like to be funny (AND, the center of attention), and I need extra therapy-hence, blog.


Also, I read somewhere that I was going to be limited to 9 therapy sessions by my insurance, unless my therapist requested more. So, I thought I better start learning how to vent before she cuts the cord.  I told her last week about my brilliant plan. And here comes the good news.  And bad news.  Same sentence, by the way:
Her: Why would they cut you off?
Me: Umm, 'cause they only give me 9 sessions, unless I need more
Her: Oh no!  With certain diagnoses, they can't cut people off! It's protected by law. (cue happily surprised look on my face).  Yes, they cover it for bigger things like, oh, let's see, Bi-polar disorder, schizophrenia,, things like that, and in your case, severe depression (cue glazed over look in my eyes).
Me: (In my brain) SEVERE?  REALLY? You had to say that?  Great, something else to obsess about. Because I was just getting used to the idea to depression at all.  Now, it's severe.
Me: (Out of my mouth )Oh, great!

So, good news (covered therapy FOREVER, holla!) bad news (SEVERE DEPRESSION).  What a roller coaster.

But, I had already begun the blogging, and I have a whole 2 official followers, so I'm in it to win it.  Or something like that.  My loss, your gain, right?

UPDATE: I talked to my therapist about her rotten label. Turns out, she did NOT say "severe".  (phew!)  She said "Major". (Gulp).  I must have looked alarmed, because she explained what that really meant, and it was about insurance billing, not stereotypes in my head (hey, how does she know that?).  Then, she said, "and, your case is mild". To which I said, with hardly any sarcasm at all, "Oh! Mild major depression. Phew! Glad ya clarified!"  Still love her, though.