First comes divorce; or Other things than death

Isn’t it amazing when you realize that your spouse has been miserably married to you for 11 years and you think “Whew! Thought it was just me! It’s both of us!” and you can continue on your way to getting a divorce. Because that’s what you do when your relationship is toxic and hurts you. 
You know what I can do for this body that is toxic and hurts me? Keep med compliant. Yoga. PT exercise. (And all the other bullshit useless advice I get from day to day.) But I can’t divorce this body. And the pain from something like I have never stops. 
So, not feeling in the mood for advice on the relationship or the body issues. Both are pretty worthless for me right now. Just have to keep my head above water until I can figure out one or the other. Since living with me 24/7 is a gamut of misery and no one in my family can stand being around me. Mhmmm. Yep. Ok then. I’ve long stopped believing the toxic bulllshit poured in my ear. Or at least I thought I did. Today he thought it was “funny” to accuse me of having a “secret Amazon account”. Just like all the email accounts I have that are secret to communicate with my …  Well I’m not sure what I do with them. I get confused easily enough that I am pretty sure I would have emailed him from an OMGZ SEEKRIT EEMAL ACCONT years aso. And as soon as I figure out what I’m doing with those emails, I will let everyone know. 
And of anyone has any questions about pain and short term and long term memory issues, be sure to ask my husband. Apparently he is an expert and understands why I can remember that I made 31k at the chamber of commerce but can forget to make a phone call on a bad pain day. Or an agreement we made on a bad pain day.  WHOOPS. That’s backwards. He knows not shit about how it works. But is sure ready to use it to hurt me. 
In closing, if you think the man I married is an asshole, you are no longer welcome at his house while you are in St. Louis. I have a list of names if you want to know if you’re on it. Or if you just think he’s an asshole in general, you’re not welcome. But be aware. History has a way of rewriting itself around him. So if you’re not sure, err on the side of caution and just don’t come to his house. That way things are nice and easy for him. (But if you want to sneak over when he isn’t here and see my new bathroom, you’re more than welcome!) 
File this whole thing under “I DOAN GIVA FUUUUUUUCK” as per the movie Friday. 

Joint pain and range of motion; or Words I Say While Putting on a Bra

I don’t know how to begin to explain the joy that is putting on clothing when you have chronic pain issues. Because you have no idea how all that stuff is connected until one thing hurts. And it can be only one thing. Or many. Either way, it’s a load of fun.

When  people have surgery, they learn quickly what is connected with what. When I had my oldest, there were complications that lead to me basically having to have minor surgery to fix things after. And it was the most painful experience of my life. Or at least it was in the top five. I was still in the hospital when I sneezed. Before I could even start crying, there was a nurse there to put something good in my IV. Because all that stuff is connected And even coughing was profoundly painful. It took me a month to be able to walk fully upright. I have heard from people who have had even laparoscopic surgery that said they had no idea how connected those muscles were until they coughed. Or sneezed. Or went to stand up. And everything, and I mean everything went OHFUCKNO and that was the end of that.

In my case, things are strange. Things that hurt one day, may not hurt another day. One morning I may have full range of motion and then other mornings I try to stand up and hiss in that special way that means “Where the hell did that come from?”. I am lucky enough to have swelling in my sternum due to RA. And that is one of those things that you don’t know how much you flex that area until you flex it and it puts in its two cents worth. It makes using my nose spray fun because sneezing is so painful that I will brace myself on the counter. Which is a bad idea as that is how you hit your head and knock yourself cold. Which is about the most embarrassing thing to do. Especially when there is no one in the house with you and you wake up on the floor with a bump on your head. Not that I would know from experience. NOT AT ALL. I watched Jessica do it. At least once.

So – putting on clothes and how it relates to the rest of my life.

For the most part, we cannot go in public, as women, without a bra on. This is something that can be uncomfortable physically and just socially. But on the days I cannot put one on, what do I do? My husband has given me suggestions about how to put on my bra which makes me want to stab him in the face. Guess who has never worn a bra? HIM! And guess who has no idea how to twist their shoulders and hips and torso to put one on? Well, again, that would be him. Any form of trying to put one on when you have shoulder, neck and sternum issues is amazing. Put it on backwards and turn it around? Still hurts. Put in on with the straps up and over already? Twisting shoulders and torso to get it hooked – still hurts. What it comes down to is – it hurts. It is social and sometimes physical necessity that most people who don’t have to wear one or who *do* have to wear one but don’t have pain issues don’t grok the depth of having to wear one to go out.

So let’s talk about anxiety about leaving the house. Like the bra, there are things that can make me socially and physically uncomfortable about leaving the house. And the “helpful” commentary I get about leaving the house isn’t actually helpful. My anxiety disorder and asking me what “set it off this time” is like asking me why my sternum hurts. Well, I have RA. In my sternum. Why am I having a panic attack about leaving the house? Well, I have an anxiety disorder. There is nothing that “sets it off”. It is something that lurks in my life and some days makes it impossible to do the easiest of things. And continuing to insist that there has to be something that can be done or changed or started or stopped isn’t helpful. My Vicodin helps with the pain a bit, but doesn’t guarantee that I can rotate my shoulders. My Xanax and my antidepressant help with the anxiety disorder and intrusive thoughts, but doesn’t always mean that I can bounce out of bed and run out to PetSmart. It means that I have some chemicals that help to combat the fucked up chemicals that I live with. Not cured. Not fixed. Not perfect. And surely not suddenly explainable.

And much like the weather changing can add to my pain issues, things that change and happen around me can add to my anxiety and my depression. The chemical mix I am on now seemed to be working pretty well. I felt better than I had in years. And then something happened. Something large and angry and was not something that I had any control over. My husband and my daughter managed to have a screaming fight on Thanksgiving at my parent’s house. So what little I had gained, I lost, and then some. When the adults in your life cannot act like they are adults, there is little you can do to make things better. And when the person who is supposed to have been the one who takes care of you and protects you from the world becomes the person who shoves you back down the hill, it’s a hard pill to take. Living with someone who doesn’t have your best interest at heart for whatever reason is something that will make a sick person, sicker. It is as if they have forced a weather change and then get angry when your shoulders hurt. There’s nothing I can do to fix my brain. The only thing I can do is get help from the person who is supposed to be there to support me.

Which leads me to wonder about when it has become too much. Most of us who suffer from chronic and/or recurring health issues wonder when we will become too much. When helping becomes something not that the other person wants to do, but feels they *have* to do and it becomes a burden. And in some cases, they begin to sabotage you because it’s the only way they know how to act out their frustration. Which makes you worse and you need more help. Which means they become more resentful. Which makes you worse. Because let me tell you, we can tell when you are being hurtful on purpose. Or obtuse on purpose. Or are shoving us back down a hill on purpose because it has become too much to deal with and it feels good to shove, finally. Helping me put on a bra is an easy thing. But continuing to try to help me stay calm, get things done around the house and get me to go out to do even family things, day in and day out, is way more complicated and exhausting than helping with the pain issues. Add them together, and every day that passes, some of us wonder when it will be done. Or when the help will just stop. Or turn to harm. Or if it already has turned to harm and I have turned a blind eye to it, because what the hell else can I do? It isn’t like I’m a trust fund kid who can just do her own thing. I am dependant on the person who now holds a job. And who is angry that their money isn’t enough. And who is angry that *I* don’t have enough money. Angry about things I cannot fix. I have a child to think of outside of my own health. He has to come first. And even then, it is a struggle to make sure these things are done for him the way they should be.

So I guess the long and the short of it at this point is that helping me put on a bra or vacuuming the living room is easy. Being an emotional support and respecting my fucked up chemicals in my brain is much harder. And in a lot of cases, more harm than help is given. And we can’t even explain that. Because it’s harder for me to explain why what you think is a normal conversation in some cases is pushing me closer to the edge. Just like me telling you that my sternum hurts, you have to take my word for it that this conversation, for example, is making me hurt and I need your help.

Until one day, I realize that the help has ended. And it will. I have looked up statistics on people with chronic pain, depression, anxiety and all the other little fun things I have pinging around my life and I realize that we don’t stay married. Our partners become exhausted. Or we do when we can no longer bring ourselves to continue to explain why our partner is hurting us, physically and emotionally. When we are forced to make choices about what is more important to us – monetary security or emotional support. And then we are faced with the reality that we have neither. That’s when we stop wearing a bra and going out in public. And that’s when we stop trying to become a person who can shoulder it all. We stop trying to become a person. We stop wanting to be.

And we do. We stop.

Let go and let gods; or Sarah Has Not Lost Her Mind, I promise

Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned.

Buddha


After years of not dealing with some very hurtful people and situations, I found myself having to face them again. This time with much more perspective and less personal involvement. Explaining someone else’s behavior when it is no longer effecting you directly is a lot easier than admitting that the person you are discussing is being physically abusive and you can’t leave for a lot of fucked up but very real reasons. Some things that have happened to me, I have to go back and ask another person who was around at the time if they really happened. Because the things are so very insane. “Did he really claim that he took the needle laying on the end table and repeatedly stab himself in the eyes? And that it was my fault because I left the needle out? Did that happen?” or “Did he really want me to take him down to the Greyhound station so he could go to New York because there wasn’t an Israeli embassy here in St Louis?” (If you have never heard that second story, it’s fucking hilarious in hindsight and a very easy story to sum up living with the person in question.)

I have to admit that I had set down a lot of those coals. Or I thought I had. Apparently I built a little metal basket for them and carried them around with me, just keeping my little hands warm on them. And using them to shape my personality. And worldview. Which sucked. Hardcore. But it was the only way I knew how to live. I used the anger to keep the fear and hurt at bay. I used it to replace my feelings and my soul. It was easier that way. If I stayed angry, I could protect my life and my children. I could keep putting one foot in front of the other. I could grind things out. And still, it was a little too hot to carry. I thought I was putting them out. Or down. Or something. I thought that therapy was helping. And it is. But I realized in a blinding flash of insight (DUH HORTON NO FUCKING SHIT THAT HURTS) that I had picked them up again. And was performing an amazing juggling act. “Ow, shit, ow fuck, ow ow ow put that down what the hell ow ow ow.” And still, I kept picking up pieces of hot coals and looking at them. BUT! I wasn’t blowing on them to keep them alive. I was actually looking at them and figuring out why these particular coals were important to me over 15 years later. Or 26 years later.

I am using coals as an example because it is the best way I can think of to describe those feelings and emotions that cling after something terrible has happened. When we have no coping skills, we have no idea what we are doing. And in some cases, it is literally impossible to let a coal go because we have no earthly idea where to put it. “You’ve been killing my cats over the last three years. Oh. Well. Yes, I have no fucking clue what to do with that one. Rage, yes. But utter confusion, too.” When Ryan was born and then was gone, I stood, empty hearted, and held those coals that went with him. And had no idea how to put them down. And quite frankly, there was no good way to put them down. The anger was too closely entwined with the loss. And the loss is a gaping hole in your chest, right below your sternum. And the coals are the least of your worries.

As I am looking at these coals and setting them down, one by one, in my mental Zen rock garden (don’t laugh – it works for me) they sit lined up on the edge of the wall. Where I can look at them without the pain. Or at least the immediate pain. And I wait to understand them and why I have them. Some are so very obvious. Others are a mystery to even me. “Who knows what poison your mother poured in your ear over the years. That woman can hold a grudge like no one else.” Well, no. Not a grudge. But an insane amount of rage, eaten over years of struggle, becomes the coals that sit in your gut and do you no good. And yet, they allowed me to survive. And now that I can handle them, it’s a huge difference. The rage and hurt and pain are all things now. Not feelings. They are concepts that I felt about things that happened. Not feelings that encompass my chest and compress until I can barely breathe real air (emotions) and resort to gulping what I can. And it was never love I gulped. I never felt that I deserved to have that.


There are a couple of years in my life that I am trying not to wear on the outside. I am trying to make them things and not violently felt time and space. I trying to believe that during that time I did the best I could with what I had. And that everyone made it out the other side alive. Certainly scarred and angry, but alive. You can forgive and love if you still live. Dead leaves no other option but dead. I wore my guilt and pain like a shroud and wondered why no one could see how awful I was. Because I felt awful. How could I not BE awful? Turns out that my feelings about those two years are much like having my zipper down. Or on really bad days, toilet paper on my shoe. Things that might actually be noticed, but I usually see it first and correct it. Or at least attempt to conceal it. Even if it means using a damn safety pin to keep the zipper up or banging my shoe on a railing in an insane attempt to knock loose that fucking streamer I am fluttering along behind me. I cannot always hide the things. But my loves and my family are willing to point it out gently. I once had to walk up directly behind a woman in a hotel lobby, very VERY close, and put a hand on her shoulder to stop her. I leaned forward and said, quietly, into her ear “You tucked everything into the back of your panty hose. I will stand here while you adjust and we will make it look vaguely normal. We hope.” She went from horrified by the touch and the closeness to relief and being thankful that someone helped her. A stranger noticed a Thing and helped her fix it with the minimum amount of fuss. That is what my above mentioned group, and even strangers, have done for me.


I am in the middle of new things and new foods and new people and new feelings. So these old things popping up can be very scary. And distracting when you are trying desperately to be a new and different person. Bettering yourself and managing to scare the shit out of yourself at the same time. And then OLD SCARY STUFF and god damnit, where’d I put the Mauser cause I am gonna shoot at that shit, and even if I don’t hit it, Imma scare the shit out of it so it leaves. But we all know that we can’t scare the old scary stuff off. We have to coax it gently off the screened in porch and slam the door behind it. And hope you remember to not leave the door unlocked. Because having that shit lurking on the porch? It sucks. No one wants to have to go out the door every day with a whacking stick to beat off the bullshit hiding under the ficus that bites you in the leg. In the same place. Every. Damn. Morning. Not enough to draw blood. But to cause a limp. That people notice. No one wants that. So get some canned food and get that damn thing off the porch. And if it comes back, get the whacking stick and remind it who the fuck is in charge around here, on this porch and under that ficus. That’s me, motherfucker. So either shape up and keep your biting to yourself or get the fuck off my porch.


Cody and I sat on a porch last night and realized that a bunch of very scary things we could say to college students, they would have no idea we stole them from Samuel L Jackson and Quentin Tarantino. “WHAT AIN’T NO COUNTRY I EVER HEARD OF? THEY SPEAK ENGLISH IN ‘WHAT’?” “Oh, I’m sorry. Did I break your concentration? Oh! You were finished. Well allow me to retort…” “SAY WHAT AGAIN. I DARE YOU!” Then we giggled really hard and then went back to watching stupid happen right before our eyes. Because it was mildly amusing stupid and I was pretty confident I didn’t need to put my foot in anyone’s ass and we weren’t going to have to help stop someone from bleeding out before the EMTs got there. So it was pretty mild and amusing. I have not had space to breathe in a very long time. A chance to be useful and helpful and funny and determined and feel like I am actually contributing to someone’s livelihood other than my own AND I am helping my family. It isn’t perfect, but it is helping.

And if you think the end of that paragraph is hurtful, tell me, and explain why. Feeling like I can take a deep breath for the first time in three years should not reflect on anyone other than me, my brain chemistry and the shitty job I was let go from. It isn’t people. It was me. And if I hurt you, I want to take the coal from you and hold it in my own hand so that we can discuss it without it hurting you. I can always add it to my rock collection. It would look nice right there in the corner.

640px-Portland_Japanese_gardens_zen_garden

Photo courtesy of Wikimedia Commons. Wikimedia

 

“If you would just…” or The Four Words That Lead Into Stupidity

There are very few phrases that come after that beginning that make me want to do anything other than smack the person speaking. If this phrase disappeared from the English language, people would be much kinder to each other. I promise you this is true. Because anything that comes after those four words? They make you look like an asshole. Seriously. Starting a sentence like this assumes that A) you know more about the subject you are about to discuss and B) that the person you are speaking to is a bit of a simpleton. I mean, really. If you would just X, then everything would be fine! Goodness me!

“If you would just pay your bills on time, you wouldn’t be so stressed!” Dissection needed here. Let’s start with the fact that if I HAD the money, I would have paid my bills on time. It’s the NOT having money that is the stressful part. And every time someone says this to me, I want to look at them and say “SWEET BABY JESUS THIS IS THE ANSWER! WHY DIDN’T I THINK OF THIS BEFORE??!” Because I have thought of it before. I am trying to make 1000$ in 1500$ or 3000$ and that shit is hard. Bending time and space might be easier for me at this point. (Part of my fantasy world includes four new tires on my car and all my bills paid by their due date, every month. What a sad little fantasy I have fallen into.) “I have always paid my bills on time and $HORRIBLETHING once happened to me so you have no excuse.” I find that these people have had the good luck and privilege of health and just plain not being in the wrong place, sometimes. You got pulled over and were polite to the cop so you went on your way? Well, isn’t that nice! Once, the same thing happened to me, except the cop was having a bad day and decided I didn’t get a warning, I got 7 tickets. Because he was an asshole who didn’t like my hair color. (This is an actual story in which I learned what is and isn’t a felony and calling a cop a bigoted asshole was NOT a felony, at the time. The judge was impressed I had done my homework and threw out all 18 tickets I got in 7 days. It’s called harassment. And after a while it was just funny.)

“If you would just” are the words that belittle the thing that has happened to the other person. Be it health issues, legal troubles, money, kids being idiots… It takes what they are sharing with you and what to them is a major issue, you, with four words, relegate it to a small thing that they shouldn’t be making such a big deal out of. After may years of therapy, I have tried hard to let others have their feelings when they express them. I have even asked “Are you wanting supportive friend, proactive friend or friend with a tarp and a shovel? Do you want advice or sympathy? Because I can do both rather well.” Instead of listening and helping your friend or family member feel better about a bad thing, you are being the jerk who has decided that their problem isn’t worth real input. And I left out a phrase in there because I wanted to put in another paragraph that is JUST for this part of the input from you, who has started with the 4 Hated Words.

So, your friend tells you about a situation that sucks. That is painful emotionally. That is expensive and may even be causing them physical pain. And it is a direct result of their own stupid behavior. Guess what – THEY ALREADY KNOW THIS. You don’t need to tell them. You don’t need to chide them for their stupid behavior. Believe me – BELIEVE ME – we know we fucked up and it lead to this. I just looked at my bank account and realized I made a mistake that cost me an extra 25 bucks for overdraft. And if I had just paid attention, this wouldn’t have happened. It was my very own fault. I know this. And if I talk to you about it, I probably already know it and am looking for a little sympathy or a There There with optional head pat. I don’t want to hear about your budget sheet you would be HAPPY to send me and that if I would JUST make a budget and stick to it, this wouldn’t be an issue. Oooooooor, yes, thanks, and go fuck yourself.  (80% of the shitty things that have happened to me in my life are direct results of my own stupid choices. Or bad choices. Or no choices at all. And I find that’s true for most people. Don’t stop it from sucking, but at least I am a little enlightened about it.)

And say that this person has come to you time and again with the same problems. The same complaints. And you are not feeling charitable about continuing to listen to them. Did you know that there are other phrases that a therapist can teach you for detaching  yourself from the situation? I sure do. And so does my friend Tee. We both know how to say “I’m sorry. I just don’t have it in me right now to help you with this. It seems to be a recurring issue and I am feeling pretty done in, myself, emotionally. I can’t be the friend you need right now. And I don’t know when I will be able to be, again.” That sounds amazingly more adult than “You’ve fucked yourself over again and I’m tired of dealing with your whinging. Go bitch to someone else.” Here is where yours truly admits to saying the second thing and not the first and left scorched earth behind her in a relationship that never really recovered. It is a matter of choice of how you want to pause this relationship in question. And it’s so very hard to be the adult. So god damn hard.

But back to the Four HorseWords of the Bitchocolypse. Don’t start with them. Use this as a jumping off point to understand that the problem someone is bringing to you may be a mask for one that is so deep and so scary that all she can do is bitch about the water bill not being paid. Maybe she is leaving town to try to get a job and is terrified about the effect it is going to have on her family. But what she *can* say is that she can’t get him to do the god damn cat box. Because that’s an angry thing that is simple and people can relate to. Not the fear and guilt of leaving an autistic child with a father who hasn’t spent the time with him over the last two years that she has and that she is terrified that this may be her last shot at making money for real. And that is when the “Why don’t you just tell him that BLAH BLAH BLAH $CONSEQUENCE.” is not helpful. Because she’s done all that. And she doesn’t know how to give voice to the fear and the anxiety of the Real Hard Issues, so she bitches about the everyday ones that are open ended and never ending.

Those four words, in short, make you unkind and dismissive. And hurt other people. They are right up there with suggesting I get a bus schedule to get a job or that I should be willing to accept anything that’s offered. How do you know more than me about the issues I am having trying to get a job. The bus ain’t gonna fix it, sister. And you just let me know what category of friend I have to put you into, now. It isn’t the one I will commit a federal offense for, either. So don’t even ask me.

More on this later when the other pains aren’t chewing at my toes. The little bastards aren’t going away…

Part Deaux; or Sarah complains more about medication and you

Some people have more than one chronic illness. Some go hand in hand and others are competely random. And medicating them successfully is a nightmare at times. I’ve been clinically, chronically depressed since the age of 12 when I hit puberty. And went unmedicated and undiagnosed into my late 20s. That’s a long time. And even then, that was just the tip of what was actually happening to me. I didn’t get an initial pain diagnosis until about five years ago. And I had the pain a lot longer than that. I just had an asshole GP who handedme ineffectual drugs and ignored my symptoms. And there are medications and treatments that go along with both of these things, the depression and the pain, that are a delicate juggling act. What’s causing the pain? What brain chemical am I missing that makes me depressed? What came first? The chicken crossing the road or a cross dressing chicken. And how *does* a chicken cross dress? Now I have completely confused myself so we abandon that one and walk away quickly, not making eye contact.

All depression medications are a size 16. And gods help you if you’re petite. Pain management and depression medication is like getting a size 16 top and a size 12 pants to work the first time at the same time. It’s impossible. And then your body chemistry changes. And the things that worked before, don’t now. Want to start all over? Most people don’t. I don’t. I didn’t. I skipped it. Went back to drinking. Let me just say that wasn’t my best idea ever. Wasn’t my worst, but just… It was bad. And the thing is? I am pretty typical in that. Self-medication wasn’t something I made up on my own. And it isn’t something I tried only once. The depression and loss of self lead you down some scary roads. I used to refer to it as “suicide by bar”. But the really great thing? I wasn’t alone.

Not every person in a bar at last call is an unmedicated freak case attempting to fill the hole in their chest with alcohol and self loathing. Some of us just wanted a drink after work and if we got laid, hey! More good for me!  For long stretches of time I could supress the feelings, work my ass off, raise my kids and occastionally get laid. But there were long, dark tea times of my soul, too. (Points if you get that one.) And it was during one of those tea times that I decided maybe it was time to try someting else. Let a professional deal with me. Because having a series of very serious thoughts about a bridge embutment right there at the bottom of the ramp on the way home from work? Apparently that shit ain’t normal. I am pretty sure if any of you were my REAL friends you could have told me that and I could have avoided that 16 hours on the ward and sitting next to a chronic masturbator during group therpy. Yeah. I didn’t belong there, but all of the size 16s I had tried made me hate myself. So let’s give someone with letters behind their name a try. (Side note – there is a hilarious story about me and my second psych doc thata came from me havung been married to a head case for years. But that’s for another day. For when I need a good laugh.)

Meds are a balancing act. That not only depend on weight distributed equally, it depends on where you are standing, if the wind is blowing, if it is raining, if the sun is in your eyes, if you’re tired or if you have just tried to fight off 16 duck sized horses. Or one horse sized duck. Heart rate? Blood sugar? Familial tolerance? And this is if you are depressed. If you have anyting thqt goes with it, we are talking about a new balance to go with the old. And as things crop up, and you fight to deal with them your body chemistry changes. I am on a medication that has been a god send for my basic pain issue. I cannot even imagine if it came back. But we knew from the begining that this is a med that will stop working randomly. For no reason, really. I asked if it was a union drug or if it was related to my ex but my doctor has no sense of humor. None. 

So the answer is no, they still haven’t worked out my meds. Shit, they still don’t know what all is wrong with me. And no, you don’t get to help. I’m sure I have put all your suggestions down already. 

And I think the Stupid Med Question can move into the Why I Hate The Internet post that will be subtitled “Why don’t they call WebMD by its real name? www I Have Cancer dot com.”

Keep helping me think of new things. Pain brain and anxiety are clouding the tubes. I will be interviewing an RN with MS soon as I think some of her story is like mine, and of course, very different as she has a Real Disease and I am “just tired” or “should be grateul for what I *do* have. So stay tuned. I swear I get funnier as time goes on. Just like the whale joke. 

Title here – witty later

Today I feel bad for not being crazy enough. Or not hurting enough. Or not being diseased enough. I know this is the depression lying. Telling me that others are soooooo much worse than me and what the hell is wrong with me that I pretend to be sick.

Then I do something that proves my illness like, say, cut myself or pull my hair or bang my head on something to feel better. (Which I haven’t done in years.) Or I walk with a cane or have to take a LOT of pain medication and sleep a lot. (Which I did yesterday – the cane- and should have done today-the sleep.) Or don’t sleep at all. That’s why the start of this is at 2:46 am. Because I’m not ok. Because I am fragile enough to feel like I am actively dying. Or that I am fragile enough to believe I am better dead. 

On my good days I wonder why I don’t have a job. On bad days I wonder why I am alive. Stay awake at 4am and make myself feel worse? ( In this case, yes, because my 10 year old was up at 3am and I can’t let him do that.) Or sleep, and still feel bad? (I just went to check on him and he’s still sleeping so lightly that the hall light woke him up.) Some days it is a choice between feeling like crap or feeling like shit. 

And here’s where the fun comes in: when you feel like this and people don’t believe you. Whether it is about the depression or about the sleep. Or the pain. They question your medical choices. Your meds. Your pain levels. Your depression. Are you sure you have tried hard enough? What if you walked more? Or tried eating more bananas. I had a doctor tell me recently to “eat more red fruit” to cope with a massively low potassium level. I wish I was kidding.  Welcome to finding a new GP. Because I’m pretty sure if that was the answer, my other doctor wouldn’t have called me and said “Your potassium level is super low, please call GP soonest for help with this issue.” And when I called back to to say “Uhhhh Dr K said to eat more red fruit and I’m not sure that’s the answer” and she said “Well, no.  Take double the double amount you already take and retest” and my potassium was still low, this kinda lead me to believe that there’s an issue here and it’s not my adherence to the food pyramid. Even though they have totally changed it from when I was a kid and I don’t understand it or remember it any more. Much like cellular level physics and New New Math. This shit is all new and confusing. And I still say doing subtraction is better than guessing and frustrating the shit out of those of us who know the answer. 

If not being believed and being treated to “brutal honesty” was the answer, more of us would be walking upright and less of us would contemplate dying as a rational answer to our problems. In my case it isn’t a need for suicide, it’s more of a need to not be here; not be this. To be Other Than Alive but without all the freak out that comes with it. Which seems near impossible to do so I keep doing the alive thing. Which still sucks, mind you. I just can’t come up with a better way to be Other Than Alive. And the honesty thing doesn’t help. I know how you feel about me and my illness. I can feel it when I talk to you over coffee. Or read your Facebook posts. Or just by your silence. If it was honesty I needed, I have a Truth Speaker in my life. She will never lie to me. But she also knows when to tell me Truth. And it isn’t always. And it some cases it is never. 

Side note: I haven’t heard from my best friends in weeks. In some cases, years. Because my illness made me too hard of a friend to keep, or I got tired of explaining and apologizing. It’s hard to be a good friend when all you do is need. Money, time, help or attention. In some cases, even asking for gentle treatment becomes too much. Telling people that what they are asking of you is too much, but having a never ending hand out for help. (Spell check just changed “help” to “gecko”. Pretty sure I have yet to ask you all for gecko with my pain. Although, maybe it would help with depression and I’m passing up a perfectly good cure. You never know, do you?) 

I’m exhausted and I am out of answers. And time. And money. And ideas. And me. I’m out of me. I once thought of myself as so expansive as to be able to be enough for everyone. Now I feel like I am not enough for even me. And I *have* to be enough. I have too much riding on me to not be. 
He’s asleep on my floor. Or at least attempting to sleep, laying on my floor. I think I will join him in at least trying. But not on the floor. I promise to be funny later. Just can’t do it at 4:51 am with a sour stomach and an aching body. 

When is a size 16 *not* a size 16?

See, that’s a trick question. Believe me. Every woman who read that went “HA! There IS no *real* size 16!” I’m not sure about Europe, but I do know that here in the US, there is no sizing that goes across brands. Or even different styles in the same brand. I have tried on two dresses, same size, same style, different color – and had one of the two not fit me. What I’m trying to get at is that I don’t grab six dresses of the same size off the racks and after trying one in, assume the rest will fit me, or *not* fit me, in the same way. I have to take the time to try them all on and see what works. And that’s just size. We aren’t talking about that cute little peach dress you grabbed that looked amazing on the hanger and made you look like you’re someone’s least favorite child and this is what you get to wear, Cinderella. Because that happens too.  Just a little too green to go with your skin.  That cut of the front makes you look super busty. There are 100 different reasons that dresses and pants and shirts all don’t or do fit. This whole paragraph is a lead in to medication. So, sorry, to all the men who don’t get this analogy. 
————————————————————————————-
When you are first diagnosed, or even before that, you will be playing medication roulette. There are  a ton of what I refer to as “starter meds” out there for whatever it is that ails you. And these are medications that have been used for better than half a century. I won’t bore you with a history of any medications, but understand that when I say we have hundreds of meds, these are usually all descendants from an original handful. That until recently, we didn’t even understand *how* they worked on the body, we just knew they did. 

Then add medical diagnosis parameters that didn’t exist even ten years ago. And that’s when shit really gets fun.

When someone asked me “Ugh – don’t they have you on the right meds YET?!” I wanted to cheerfully punch them in the mouth and say “NOPE! STILL FUCKING CRAZY!!” but then we get into that whole “danger to self or others” and I don’t want to have that conversation. Again. 

Imagine for a moment that you need glasses. Some of you already do, so this one is easy for you. Imagine if they guessed at a prescription for you, told you to try them out and if you didn’t see better in six weeks to two months, come back and we will try something different. You still wouldn’t be able to see, but now add headaches and nausea and walking into doorways to it. And trying to explain to people that no, you can’t see yet, but you’re sure hoping that this set of glasses helps. And sorry you can’t make their party, you’re too busy puking from not being able to see right. Now – cross out “being able to see” and put in “being depressed”.  But don’t say it too loud because there are still some ugly stigmas attached to depression that aren’t attached to needing glasses. 

And now think of this – every six weeks to two months, my medication changed. Trying to find one that worked for me, let alone worked and didn’t have hellacious side effects. If it only takes five meds, that’s about a year’s worth of dicking around with meds.That isn’t even talking about if they want to increase medication A twice, add in medication B, take you back OFF medication A, increase medication B and add C… And so on, with a few “same family, different formulation” variations. Then we are talking two years to find a medication to treat your depression. And is there anxiety that goes with it? Are you trying to crowbar more than one xanax a day out of your doctor? And then there are the REALLY fun medications. The ones that don’t make you feel better, and actually make you feel worse. 

I think that is enough to ponder for now. I think I can bring this all together in our next exciting episode. For now I leave you with a photo of Bear really enjoying himself.  

 

Gave myself time off

I don’t even read my email or Facebook while I am working a convention. So, I gave myself a healthy pass for not writing every day. But working at a con for three days gave me many much more material. And funny stuff. And stories about feeling very small. And stories about spending time with beautiful women who play Destiny and are hilarious and kind. And about now important my support system is and why I would be lost without it.  

And since I am now cursing the layout, have a joke that a new friend showed me. It’s from her store from Cinci Comic Expo this week. Lilah* bought me some dragons in eggs. But these were the best joke. Tomorrow I will be serious. 

 

A Woman of a Certain Age

I started this with the idea of listing all the stupid things said to me and about me in reference to any illness I have. I also hope to amuse myself along the way. I have an awful tendency to use the fuck word, but most of the time it’s just like breathing. I don’t even notice. I refuse to say what or even how many shortcuts I have on my phone that have the word fuck in them.


I figured I would start with this one as it is one I was actually talking to someone about, today. It was an old friend, Kay*, who has chronic illnesses herself. It was a conversation about actual age and what she wanted to do for a specific birthday, and we started talking about how this wasn’t how we thought things would go. And not in the general “Oh, gosh, I never saw myself with kids” or “Never thought I would see myself living in Florida!” No. This was things like “Never figured that my teeth would have fallen out and my tendons are disintegrating. I expected to be a little more attractive.” And these were things that we know are related to our chronic illnesses and maybe, in her case, exposure to some pretty fucking serious chemical poisoning for years and years. And this reminded me of a doctor’s visit I had a couple years ago that left me slightly baffled.

I had gone to see my OB for some kind of ladyguts** (TM) problem and I was ticking off symptoms, one after the other. I will spare you them, but it was a hell of a list. He looked me dead in the eye and said “Well, you *are* woman of a certain age.” I like this doctor. A whole lot. I would refer him without a second thought to anyone who would ask. But I was stunned speechless. “Uhhhhh what the fuck does that actually mean?!” was what I said to him. He blinked back at me and said “Well, you know, it’s just that… I mean, at this point in time…  Well. Ok.” I could see him back tracking and attempting the conversation, again. And after we had a productive pause, he went on to discuss with me the things that, while I was too early to be having at 38 or 39, seemed to be having and it wasn’t out of the question. This discussion included medications I was on, things that had happened, the number of children I had. And it was a discussion. Not a vague hand wave to tell me not to worry. That what I had wrong with me was just me overreacting to a heavy period. Turns out, that wasn’t it at all. And if I hadn’t pushed, it probably would have lead to a couple more years of me being miserable for no reason. It lead to a series of tests that showed that there was something that wasn’t normal for a “woman of a certain age”.

My rheumatologist tried using that phrase on me once. And I was much less kind. I was still learning how to communicate with her and deciding if I wanted her as a doctor I was going to be spending a lot of time with. She was awfully new to the practice and to being a PA in general, and I just don’t suffer fools gladly. We managed to work around it. And I am glad we did. Dismissal of symptoms because of the age of the person in question is a big, red warning flag that means you need to find another doctor. Because the symptoms that I am having mean something is wrong. It could be that I need new insoles. It could also mean I need surgery to correct my big toes. (Yes, I know someone who this happened to. No. Thank. You.)

Here comes the second stupid in the same post. I figured since y’all are new, like me, we should just lump a couple dumb things in the same post –

I have lumped this one in with “Oh everyone hurts at 40” because of the age thing. The abject refusal to believe that there is something wrong with me other than “getting old”. No. Not everyone hurts at 40. Not like this. If they did? No one would be going to work or playing softball. They would all be on large amounts of opiates and stay in bed a lot longer. I don’t hurt because I’m 40. I hurt because I have several physical issues that cause all kinds of pain. This isn’t a back ache. It’s vertebrae crumbling and discs bulging. And disc desiccation. So. No. Your blithe dismissal of my physical issue for whatever reason is rude. And wrong. And hurtful. So stop it. Not being able to vacuum my house, clean the cat boxes and do laundry all in one day has nothing to do with my age and everything to do with needing ice packs and Vicodin with a Xanax chaser after that much house work.


Well, that went on much longer than I thought it would. And I am not pleased with it. Which isn’t a request for back patting, it is a statement of intent. This one didn’t go the way I had planned. It wandered away like a small child with a finger up their nose and didn’t come back. But I remember reading that several authors say the same thing over and over – write. Write every day even if you don’t have a thing to write about and you don’t want to write. So. I write. I claim I get a pass while I am in Cincinnati this next weekend. But I have heard that I can put WordPress on my iPad and bug people that way. I won’t even name drop. I mean, unless you want me to. And then I will totally name drop. Because I am a HUGE dork and am always stunned when I have gotten to work with or hang out with someone with A Name because OMG HUGE DORK.

*Names have been changed because first, everyone deserves their privacy and second, y’all had best not sue. You’ll end up with five cats and a five year old laptop. If you’re lucky and don’t get the youngest child, too.

**Ladyguts is a word my daughter taught me. GirlChild may not have invented it, but it sure made me laugh.