Posts from the ‘Craptastic’ Category

The Exact Dimensions of My Despair

It is the most absurd of luxuries to know exactly why I’ve been depressed lately. For those of you relatively unexposed to mental health issues, that probably sounds completely ridiculous. For those of you with mental health problems or dear ones who have them, that probably sounds familiar. Most depression bouts have triggers, but they’re rarely obvious. They’re things like an exciting upcoming event or a slight shift in sleep schedule or a missed medication two days ago or a weird food thing or you name it, it can mess with mental health. Trying to suss out what caused the mess is sometimes as stressful as the mess itself.

But that’s not what things look like right now. Right now, I know exactly what’s going on and that doesn’t make it a bit easier.

Content warning for the rest of this post: There will be a lot of medical talk and talk about hospital visits and body functions and blood and trauma and death and grief. It’s a raw deal I’ve had the past couple months and I am still raw, so I’m going to be very honest, very detailed, and very un-filtered here (language included). I understand this may not be for you, but I also won’t be talking very much about this again, so if you want to know what’s going on, this is the place. Please read thoroughly and carefully before commenting.

So. Here we go.

Let it be known, I really didn’t want to share this. This is private and awful and I have been avoiding this since it happened the first time. I have been going at this mostly alone (not completely, and thank you to those who have been there for me), but it is rotting me from the inside. I need to be able to talk about this as things occur and I feel and process. But know that it’s something I only want to talk about on my terms and I will let you know both here and in the future what those terms are. Please be prepared to respect that.

I miscarried recently. This is my second miscarriage. The first was very painful and relatively non-traumatic. This one was relatively non-painful and very traumatic. And in both cases, the bodily announcement of the pregnancy was also the bodily announcement of its ending. That is a serious brainwarp. You never knew what you had until the moment you lost it and it’s not like you were emotionally invested in this specific pregnancy but you still want to get pregnant and so you mourn the loss of the chance to be emotionally invested and WHY UNIVERSE WHY DOES IT HURT TO EVEN TRY TO PROCESS THIS?!

I miscarried in May. Well. In May. In June. In July. All the same miscarriage. I just could not stop bleeding. The entire fucking month of June was a nightmare of blood and tissue and cramps that would.not.end.

And then it did.

And then, on July 1, it started again, along with extremity swelling and high blood pressure and a reasonable panic from medical professionals that I might have post-partum eclampsia because miscarriage is a bitch like that and can still stick you with the potential for fatally high blood pressure and not even give you the benefit of a child.

Yeah. Fuck that shit.

So, to the hospital I had to trek (thankfully with a wonderful husband and mother by my side) and sat there for hours with only a bra and a gown and a literal fucking straw in my right arm just in case they needed more blood (they did – five vials at first, one later that night). Let me tell you, no matter how flexible that straw is, it is not flexible enough to make bending an elbow when providing a pee sample (or trying to read a book or transferring in and out of a wheelchair for your external and transvaginal ultrasounds) comfortable. It HURT.

And that’s when I found out I was still pregnant. Six fucking weeks and my body couldn’t get the message that this was over. I find it monstrously unfair that a decision that is already emotionally fraught is such a difficult physical and emotional process beyond the decision itself. No eclampsia, thankfully. But still pregnant. Oh, and I had a burst cyst to add into the party, because I needed that.

So I had two follow-up blood tests to determine when my body finally got the message. It took twice as long as I was told to expect for this pregnancy to give the fuck up (would that the fetus had been so tenacious in hanging on at the beginning). I also had to schedule a follow-up set of ultrasounds because the burst cyst might continue to be a problem and we need to make sure it isn’t. I am waiting for the trauma to end and trying to ignore it.

But I can’t. Because I’m TRYING TO GET PREGNANT. And my doctor told me that I needed to pin down my ovulation cycle and in order to do that I’ve been keeping a daily chart for three months trying to do just that and there, in the midst of vines and singing birds and twee flowers that seemed like fun at the beginning of this failed adventure, are the exact dimensions of my despair.

And to make it even better: the data is USELESS. A miscarriage and a burst cyst have thrown off my cycle so badly that I had to delay my fertility appointment for three months and I have to do it all over again. What new horrors await me in the midst of those vines and birds and twee flowers? I’m terrified. Those calendars feel like cages, and no amount of color or organization can make this seem like innocuous data.

I hope you can see why I didn’t want to share this already, but there’s more: I didn’t really want people to know that we were trying to get pregnant at ALL. Why? Partially because of a fear of this–I know miscarriage happens a lot. Partially because the weight of expectations is stressful enough when it’s just two people desperately hoping this will work.

Because I didn’t want the follow-up questions. The how’s it going? The so are you pregnant yet? The when are you having that baby?

Because I don’t want the hyper-feminization. Yes, I am hoping to be a carrying parent, but I do not aspire or plan to be a mother. I will co-parent with my husband and be a Mer (the title I will go by as a parent) and I will be exactly what my children need but I have Z.E.R.O intention of fulfilling what would normally be considered a “mother’s role” because while I honor those who take on the mantle of mother, as a non-binary person I will never be a mother myself and I am entirely okay with that (and so is my husband). Yet I know the world (and some well-meaning people in my immediate world) will be throwing every single bit of the hyper-feminization that comes with being a carrying parent because this is the glory of womanhood (except that non-binary and transmen absolutely have babies, too – frequently – so this experience, while mostly experienced by women, is not exclusive to womanhood). That, I look forward to the absolute least and it is the part of pregnancy I dread the most. I didn’t want to have to start fighting the battle any earlier than I had to.

Because I don’t want well-meaning invasive conversations about my body and what treatments am I pursing and what treatments other pursued. Believe me, I am well in contact with my doctors and we are doing everything we can and also we know what we can’t do. I need to be able to trust them. Part of that is not being inundated by suggestions from people who are not intimately aware of my medical condition.

Because I don’t want people asking, “Is it the lupus?” I don’t know. Maybe. I’ll probably never know and neither will my doctor and believe me I have wondered if this body made up of over-eager protective instincts has created a hostile environment for my heart’s longest and deepest desire and whythehellwouldyouaskmethatIdon’tneedhelpblamingmyself!

Because I don’t want people sharing their miscarriage stories. If you do, I will want to mourn with you, especially now as I know the pain more intimately than I had before, and I simply don’t have the emotional capacity to process anyone else’s pain right now. I don’t have the capacity to process mine alone! I have to go to therapy to process it and, while that is not at all bad, it IS indicative that I cannot. mourn. your. loss. right now because I cannot. mourn. mine.

Because I don’t want pinchy-eyed sympathy. I don’t want private messages of sympathy and concern. I don’t want any sympathy! I want silent solidarity because anything you say right now might set off a landmine and I don’t want that for me or you. You don’t deserve what might come out and I don’t need help tripping over the triggers in this rather full field.

Because I don’t want to hear platitudes and lessons on faith and eternal families. I don’t want to hear how I’ll learn from this. I don’t want to hear how I’ll get pregnant when I stop trying/start looking at adoption/least expect it. I don’t want to hear how I’ll get the chance to raise these lost babies in the next life. I’m so far away from there right now. I don’t want to hear how those spirits were too precious for Earth. I don’t want to hear everything happens for a reason one. more. fucking. time. I don’t want the all-will-be-well stories and the here-cuddle-my-baby-for-comfort offers. I don’t want to hear anything that might seem comforting in the eternal scheme of things because I am still screamingly raw (and also there’s not a whole lot of doctrine behind some of those statements and so I just want to yell and kick and a bash my head against the wall at the massively un-comforting false doctrines being paraded in front of me).

And before you think this is a list entirely made of my paranoid fantasies, I have experienced these to the letter. Already. I know how they were meant and I appreciate the intention, but this is my stand where I draw the line and say I CANNOT take any more. My heart simply will not allow another drop in this bucket.

Lastly, I have kept this silence because I worry about who I may hurt the longer I don’t share. I have close friends who I have entirely shut out of this process. This will be how they find out I am trying to get pregnant. These are friends who have been waiting to raise their children with mine. These are friends who have told me as another family member their own struggles and joys in this area. I am not ignorant of the hurt this may cause and that it couldn’t be avoided once I chose the path of silence. To you, my dear friends who I did hurt, I am sorry. I hope you can understand with the lupus and the gender expectations why even you, who try so hard to give me the space I need with the former and the respect I deserve with the latter, may have been too much at times. I was trying to protect myself and perhaps I chose the wrong way, but that choice was all about me and not about you. I trust you and love you. Sometimes, I fail to trust and love myself.

And so, we have come to the point that I share, despite all these reservations, because these are the *exact* dimensions of my despair and they are poisoning me.

So, with all the do not wants and the anger and the lack of desire, but desperate need to share, here are the terms I promised:

  • You can stay silent if you simply don’t know what to say or how to say it. I fault you not at all.
  • You can say, if you simply must say something (and I understand, oh, I understand that instinct), that you love me. That you wish you were here. That you hold me in your heart and in your thoughts and that I am not quite so alone as I might feel.
  • You can offer help, for such a time as I am ready to take it. Do not state what that help might be (that can too easily deviate into miscarriage stories or health advice), just tell me you have help to give when I am ready. I will come when my heart has strength. And I will hear your heart’s desire for my own to find peace.
  • You can pray for me. You can keep me in your thoughts. You can send positive vibes my way. Those are always most welcome and appreciated and it will not hurt one bit.
  • You can trust me to process this with my doctors and the professionals and my husband and family.
  • You can trust me to ask for what I need from you.

And so, my loves, my friends, my treasured persons, these are the exact dimensions of my despair.

But also, perhaps, here lie some of the dimensions of my hope.

Love,

Joie

You know which movie I’m talking about.

I’m seeing a lot of think-pieces about a certain movie coming out this weekend* and I’ve yet to see one that hits the mark for me because they’re almost all in the business of judgement and ridicule, often of the particular kink (badly and incorrectly) portrayed in the books and film.

So here’s my take on the upcoming movie:

I can’t get torn up about a film that portrays a totally valid means of sexual expression in a wildly inaccurate way. I can get torn up about the abuse the main male character practices, using that kink as a blind.

I can’t get torn up about another R-rated movie earning its R rating. I can get torn up about how frightening the dynamic is in those scenes that earned the movie its rating.

I can’t bring myself to protest the movie – it’s no worse than a lot of other entertainment. I can bring myself to some other movie and not throw my money (or clicks/searches) in that direction.

I also can’t bring myself to judge those people who enjoy the movie or books. I enjoy a LOT of bad movies and literature, some because I didn’t know better when I consumed it and am now afflicted with a vicious sense of nostalgia (see: Piers Anthony), some because I just love corny, campy, so-bad-it’s-good entertainment. I can refuse to judge other people for loving problematic entertainment. You CAN.NOT. tell me that you don’t love some problematic entertainment. Everyone does. I don’t care if it’s old films filled with insidious racism or those terrible video games with sexualized violence or this movie. I may think those are poor choices and I won’t participate in them or facilitate your participation, but I will not judge you for participating. I will only encourage you to think about the decision critically.

My critical evaluation has led me to choose not to see the movie or read any more of the books than I already have. It’s also made me really sad that this is the current pop-culture portrayal of BDSM because it’s only further stigmatized something that I think is unfairly and wrongly demonized (also a thing I won’t judge: what goes on in your bedroom – NONE OF MY BUSINESS). I’m also REALLY ready to see the discussion move on to the next big/bad entertainment thing. Getting tired of this one.

*One of the things that has annoyed me most about all the think-pieces I’ve seen is how they are actively advertising a movie they say they want to be protested/ignored into oblivion. I’ll give my internet column inches to it because the judgement is what annoys me most, but I refuse to advertise for the movie. Y’all know which movie I’m talking about. You’re smart. And I never have to mention it or tag it.

For the record: I’m making myself do this. (Also known as: The Dreaded Health Update.)

So, last I wrote about my health was about a month ago. And I was going to go see a doctor in just under three weeks to get the results from a crap ton of labs and x-rays (which will reflect very painfully on the wallet). I was expecting to get bad news and I reallygenuinely thought I was ready to hear anything the doctor could say to me. I thought I was doing okay. Bad stuff was coming, I could handle it.

Wrong-o bong-o, Josephine.

When, on August 13th (gosh, that does not seem like only two weeks ago), I went to the doctor, I got the news I was least expecting: I have lupus.

I’m pretty sure my ears are still ringing after hearing my world crash in on itself like that.

I can’t fault the doctor. He said in the original appointment that he thought it was lupus. I just didn’t believe it was. I thought it was RA or that connective tissue disease he mentioned. I really didn’t think it was lupus. Even so, I thought I had prepared myself to hear whatever he had to say – most or least expected – and clearly I hadn’t. I was numb. In shock. I called parents and The Surprise to let them know what the diagnosis was, but I was on auto-pilot.

I drove myself back to work and the closer I got, the more I felt like I was about to panic. I had just heard life-altering news and I was scared. I’m proud of myself – I was the first to make the House joke – but I also know I had limits and I ran head-long into those limits that day. People, I wept. Openly. I don’t weep. I trickle. Occasionally, I dribble. But I do. not. weep. Yet, that day I could not hold back the tears, no matter how hard I tried. I was done.

I took a couple days off work to get my head back in the game. Frankly, I wanted to take longer. Maybe I should have, who knows? All I know is, I’m doing my best to move forward. And, in this context, moving forward has meant not thinking about itIf I think about it, it’s too much.

So, now that I’ve had two weeks to process, I’m making myself do this because I need to practice thinking about it. I knew a young lady who suffered significant injuries to her left foot in a severely traumatic car crash. She had skin grafts and all sorts of primitive-seeming surgeries on her foot as a result. One day, her doctor and the nurses came in to change the wrapping and she, as she had always done, looked away. The doctor said, “No. Look at it. That’s your foot and the faster you acknowledge that, the better.”

Wulp, this is my foot. And it’s time to acknowledge it. I have lupus. And I am TERRIFIED.

I’ll get to why I’m scared in a bit. First, I want to talk about what YOU can do. I know that’s one of the first questions many of you have asked, and its one of the easiest to answer: not much. Lupus makes everyone feel helpless – patients and family/friends of patients alike. This is because it’s just not an obvious disease. One of the first things we (my mom, dad, and I) read about lupus was that it was a disease that was hard on the friends and family because they wouldn’t be able to see it. Lupus tends to manifest in quiet, small, very inward ways, rather than in a recognizable, outward set of symptoms. People with lupus don’t *look* sick. I have already experienced this in the two weeks since my diagnosis. This is one of the most important things for you, my friends, to know: I will not always *look* sick, but believe me when I say I am.

Another thing you can do – for both me and yourself – is get familiar with the Spoon Theory. I used this before I got my diagnosis, both as a language to describe my mental state or physical exhaustion (which we now know is a side effect of the lupus) and as a common language my sister and I could use in regards to health. We both have chronic illnesses. With those illnesses come limits that we need to be mindful of and honor or we won’t make it through the next day. This is the BEST, most accurate way we’ve found to communicate when we’ve reached/need to avoid reaching those limits. If I (or my sister) tell you that I have no spoons left to do something I’ve expressed interest in doing, listen. It’s not that I don’t want to do it or that I’m merely tired. It’s that I have completely run out of any and all physical/mental/emotional stamina that I might have and I need to take the time to restore it. Running myself into the ground isn’t just counter-productive; it is actively dangerous.

Frankly, I recommend everyone at least become familiar with the Spoon Theory because everyone has limits. And maybe not everyone has the same limits, but this way you can communicate, concisely and clearly, when you have reached yours. Still, if the Spoon Theory doesn’t work for you, that’s fine. But understand that that is what I will be using to communicate my health status.

The last thing you can do for me is NOT ask how I’m doing. There is no question more annoying than that. Why? Because it makes me think about how CRAPPY I feel and makes me talk about it with someone else, which can be pretty tiring. That question brings my carefully directed concentration in a direction that just leads to dwelling on pain and exhaustion and not on productive things. If you want to know how I’m doing, ask about my day or my wedding plans or my work – about actual things in my life. Let me bring up my health. Once I’ve brought it onto the playing field, it’s fair game – until I say I can’t talk about it anymore. Only I know if I have the spoons to talk about my health with someone else, so while I appreciate all the love and care that is in your inquiry after my health, please don’t force me to talk about it if I’m not ready.

And now onto treatment: I’m on a medication that I take twice a day. I will likely be on medication for the rest of my life. I know it shouldn’t, but after working so hard to get off the drugs for my Bi-Polar, this feels like a set back. I’m not anti-medication, I take what I need when I need it. I just don’t like needing medication all the time. This particular medication is used – in much larger doses – to treat malaria. How they discovered that small doses treat lupus is BEYOND me, but I can be grateful for that particular medical mystery.

I do not know if it’s working. I won’t know for at least another two weeks. This particular medicine does not reach noticeable amounts of effectiveness until one month taking it and it takes another two months to reach peak effectiveness. That means I won’t know if its the right medicine for me until right around when I get married (in fact, three months exactly on the day I get married). Ugh. A week and a half before the wedding, I’ll go see my doctor and talk with him. If it seems to be working, great. If not, I’ll probably end up switching medicines right before I get married. Please, please, please pray that this medicine is effective. Switching medicines (or, more accurately, side-effects of medicines) is a really frightening process.

The good news is, I do know I’m not allergic to the medication. One of the exceptionally awful things about lupus is a propensity to react to things (meds, the sun, a random encounter with a scent or lotion) with rashes. Lots and lots of rashes. So, for the first few days, we kept an eye out for rashes. There haven’t been any. I’m in the clear. It also is fairly non-toxic, so if pregnancy is something I feel up to doing physically, if my mental health is in a good place, and if this medication is effective for me, I still have the option to bear children. That’s a lot of ifs, but it’s also better than nothing. That being said, the medication can cause brown spots to form on the back of the eye, so I have to be diligent about my yearly check up with the optometrist. The chances are about 1 in 10,000, so not so bad, but just one more thing I get to worry about. (Are you starting to see why “How are you doing?” is actually a really complicated, scary, difficult question? I hope so.)

And now, on to the lupus itself. (Yup, this is my life. All that is just window dressing before the real show.) Apparently, one of the biggest concerns is kidney function. Lupus can attack kidneys with the best of them. Right now, my kidneys are doing GREAT. This is excellent news. I did ‘soft pass’ on the RA test again, so it looks like my lupus will continue affecting my joints the most. However this does not mean I won’t have other symptoms (read on, MacDuff, for the others). I haven’t had any joint flares for a few weeks, so hopefully that pattern will continue until the meds kick in so I can avoid flares in general. They’re not pleasant. 

I’ve currently got a couple random rashes (that I thought were Just Part of Life and How Skin Behaved) that should recede once the meds kick in. Lupus is characterized by a butterfly-shaped rash on the face and, as many of you know, my cheeks have always been in high color. Upon inspection, the line of that rash does, indeed, imitate the wings of a butterfly. Hey, look at that!

That’s actually been one of the really positive parts of the diagnosis: a lot of things that I thought were Just Part of Life have been given a context I did not know I was missing. I’ve struggled with intense fatigue since I graduated from college, right around the time I was first diagnosed as pre-arthritic. Now I know why. That’s what I’m most looking forward to as the meds kick in: getting energy back. Now, it might be a while and I will likely have some lifestyle changes I need to do, but just knowing I have lupus has given me information I NEED to be able to combat this persistent fatigue. I had almost gotten used to life like this. It’s good to know I don’t HAVE to be used to it. Also, I got pretty freaked out a few years ago when my hair started falling out like gang busters. My dermatologist ran some tests, but apparently not tests for lupus. (No surprise. Who jumps straight to lupus?) Because my hormones and thyroid were fine, he told me it was probably just a normal hair loss due to a significant loss in my body weight. But, when my weight loss leveled out and my body normalized, my hair loss did not. It continued to come out in large amounts. I would run my fingers through my hair and have chunks come out from that simple motion. It was something that scared me quite a bit, but that I was told was normal, so I had to squash the fear into the back part of my brain where it could live but wouldn’t intrude on my daily life in any significant way.

To those of you who read that and said, “Wow, that sounds unhealthy.” You’re right. It is. It was also the only way I could keep moving forward because my doctor said that this was normal. It was Just Part of Life. For those of you who read that and said, “Wow, that sounds like a coping mechanism trauma survivors use.” You’re right. It is. It was something I learned when I was dealing with some of the issues that contributed to my Bi-Polar. It’s not the best way to deal with scary things, but often it is the one I default to because it is a habit. Having the lupus diagnosis is helping to break the repression cycle, as I’m no longer being told I’m imagining things, but it will be a process.

Now, on to why this is still Oh So Scary for me. I recognize the positives in having a diagnosis that gives me so much more information, that helps me realize I’m NOT imagining things about my health, that puts my aggressively poor immune system into a greater context, and that has lead to treatment of these issues. These are very good things. My mind is at a much greater rest than it ever was. HOWEVER, the diagnosis also brings with it a whole host of challenges. I mentioned the side-effects of the medicine and the worries about kidney function. Those are fairly easy to deal with: take blood regularly, make sure I see the right doctors every year, etc. What isn’t easy to deal with is the vast and varied unknowns.

Do you know why House always said, “It’s never lupus!”? Because it almost never is, but also because there are so many ways that lupus presents that it ALWAYS has to be ruled out. I know how my lupus is presenting now: intense fatigue, joint aches, hair loss. I don’t know how my lupus will present tomorrow. No clue. And because the presentation of lupus is so unique and individual to each patient, I have no idea how it could present. I will be on a constant alert for the rest of my life, watching for new symptoms. That’s exhausting to think about right now. Eventually, I’ll get used to it. It will be Just Part of Life. But right now? That’s scary.

The hair falling out is still pretty scary. I’ve never been particularly vain about my hair. I’ve dyed it and chopped it, not caring if the result was so bad I had to shave it all off. I love having my hair, but I could also easily see a world without it, so long as it was my choice. Possibly not having that choice makes me feel very out of control. Also, seeing my hair fall out like that when I brush it (and even when I’m not brushing it) is a constant, ever-present reminder that I Am Sick. Broken. Unwell. That’s not easy. It’s gotten to the point that I don’t brush my hair every day anymore. I’ll consider myself in a good place when I can do that again.

I’m terrified of losing the use of my hands. And no, I don’t mean that they’ll be paralyzed. But right now, I have a lot of functional mobility in my hands that I use ALL THE TIME. My form of release and relaxation is crafting. Many of you have received handmade cards and gifts from me. Paper crafts, cloth craft, yarn craft, paintings, drawings, writing – these are all things I do to take care of myself AND to show you I love you. The thought of losing the ability to take care of myself and show love to others like this is intensely frightening. Every time I pick up a project, I wonder if this is the last one I’ll be able to do. It’s made crafting less restorative than it used to be and I resent the hell out of that. BUT, I don’t think this is permanent. Once having lupus becomes a background part of my mental landscape, I think I’ll be able to find that peace and rest in creation again, rather than a dread at the day it might end.

Remember in old animated films how you ALWAYS KNEW which book was going to be taken off the shelf or which supposedly-lifeless object was going to become animate because the painted background and animated foreground styles were so disparate? That’s a lot what my mental landscape feels like right now. LUPUS sticks out like a sore thumb. Eventually, it will transition into the painted background, just as my Bi-Polar has. But, for now, it’s right up front and scares the ever-living shit out of me. If you do accidentally ask me, “How are you doing?” please understand when I don’t reply. Or even reply, “How do you think I’m doing?”

I’m not doing so great, but I’m not drowning yet. It’s going to take time to get to the point that I’m doing any different than that. It’s going to take even more time to get to a mere “okay.” And all of us, you and especially me, are going to have to be okay with that.

For now.

I’m little, and broken, but still good. Yeah. Still good.

So, there’s been a LOT going on lately.

A lot.

As many of you know, I’m getting married! Which is great. The Surprise is everything I could have hoped for in a partner and I am exceptionally happy. There’s a wedding website and everything, so if you want to go see pictures of us being cute and ridiculous (and my most GLORIOUS blue hair), you can.

And it’s summer season, so rodeo is in full swing! Work keeps me plenty busy. The wedding keeps me busy when work doesn’t. Though I prefer being busy to not, I’m looking forward to my vacation next week when Celessy comes into town! It’s been two and a half years since I’ve seen her in person and that is TOO LONG.

But all that was totally expected. I knew, going into this summer, that I would be crazy busy. Wedding planning and work were going to consume most of my time. What was not expected was the health issues that have popped up.

Very few, if any of you, know that I had a kind of odd and nasty scare in May. I alluded to it a couple posts ago, but that post was mostly about community and joy in finding one. And I didn’t really share that post around. So very few of you know even that I’ve spent the last two-plus months under this cloud of, “What is happening in my body?” And now that I finally have some answers, I figured I was ready to share a little. So, from the beginning:

In mid-May, my hands started hurting so badly I wondered if I had gone sleep walking and fallen over, catching myself on my hands. That scared me for a lot of reasons. Mostly for the, “How could I not wake up to that?” But, there were no signs of infection or puncture wounds or the like and I had rarely sleep walked before, so it was a possibility. Also a possible cause was the new supplement I had been taking (on doctor’s orders) for about a week.  I thought it was strange that I would react solely in my hands to an oral supplement and that it would take so long for me to react, but I figured it was a good policy to stop the supplement for a while to see if that helped.

Thankfully, the next day provided some answers. While still in a lot of pain on my palms and in my fingers, I noticed that I was having a hard time removing my rings (which are usually loose on me). The pain was caused by swelling – ah hah! So, I made an appointment with the doctor because random swelling is ALSO kind of a scary prospect. I went in and explained my symptoms. I told the doctor that I had started the new supplement, but – oh, by the way – I had been diagnosed as pre-arthritic four years before. She looked over my joints and said, “Well, we can hope it goes away and, if it gets bad again, you can come back. Or we can just do some blood tests for rheumatoid arthritis now.”

I really had been thinking it was the supplement. But I didn’t see the point of waiting for the hurt to come BACK if  we could run tests then. So, I told them to take the blood. They told me they’d call early the next week with the results.

On the following Tuesday, I got a call. “On the three tests we ran, you tested positive for RA on one. It’s only a soft pass, but the doctor still wants to send you to see a rheumatologist in light of your symptoms.” This was it. This was the moment I had been warned was coming four years earlier and I was in no way prepared for it. Rheumatoid arthritis is an auto-immune disease. As someone who has lived in the same house as someone with an auto-immune disease for most of her life, I knew – if only to a certain extent – what this meant. And I was terrified. I clung to that “soft pass” like a lost soul. Maybe I still had some time before it came on full bore. I was really hoping to be married and have a kid or two before I had to deal with this. What did this mean for having kids? Auto-immune diseases are NOTHING to mess with and the treatments can really screw with child bearing ability.

This is how my brain works – worst case scenarios first. In some twisted way, it helps.

All of this ran through my head as the lady continued, “Just to warn you, though, we’re short on rheumatologists in the Springs. It takes a while to get an appointment. You might have to go to Denver.” Okay, fine. I can do Denver, I have a doctor there already, no big deal. I told her to refer my case to the office she thought would get me in quickest, thinking it would *maybe* take four to five weeks.

Wednesday, I got a call. Nine weeks.  I had to wait nine full weeks to see a rheumatologist. And this was already a full week after getting tested. So, start to finish, I had to wait ten weeks to get answers. And I really didn’t have another choice, so I took the appointment.

Those were not the best nine weeks of my life. I was so busy and stressed and then, at the most ridiculously inconvenient times, my brain would remind me, “Hey, you have RA. You’re sick. You have no idea what this means for the rest of your life, but you know it’s not good.” REAL HELPFUL, BRAIN, THANKS. And I had more flare-ups in those nine weeks than I had in the previous four years. I figure stress probably had something to do with it, but that just made all the fear and not knowing worse.

Finally, on Wednesday, I got to sit down with the doctor. I fully expected him to say, “You have RA. Here’s what we’ll do.” I was sort of prepared for it. I was not prepared to hear him say, “I know you have an auto-immune disease, but I don’t think you have RA.” Turns out, my soft pass was just not convincing enough, but on one of the other blood panels, the panel for lupus, was pretty darn convincing. However, that blood test is easy to get a false positive on. Also, my history of back pain could indicate a connective tissue disorder common in the family members of those with Chron’s Disease (the auto-immune disorder my sister has). So, while I got a few answers, I didn’t get anything definitive. The doctor ordered a new battery of tests to double check the RA and lupus tests and to check for the possibility of the connective tissue disease. But he did tell me they were all treatable with the caveat, “This won’t go away.”

That is NEVER fun to hear from your doctor. I’ve heard it once before. It’s hard. Even if you know in your head that the disease you face is life-long, it is depressing as hell to have a doctor confirm that what you have is incurable, even if its manageable.

And I don’t know if you know what it feels like to live with a life-long disease, but it sucks. You hate your broken body or broken mind. You loathe yourself for NOTHING that you can control. You feel SO SMALL, so beaten down by the disease that invades your life. It’s so big you can’t escape for a second. You get up every dang morning wondering what your brain or body is going to do to you today, asking yourself, “Can I even do this?” And the answer is always, “You don’t have much of a choice.” And sometimes, you find you can’t do it, but that very few people understand why you can’t because you’re so normal most of the time. What makes this day any different from the next? And you have no good answer to that question. It just is different. And it’s awful. And you hate yourself even more. I have lived through this since I was ten and it took me a very long time to stop hating myself for my Bi-Polar and learning to live every day without it dragging me into this dangerously cyclical self-loathing.

And then I learned that my body is fundamentally broken. Bad enough that, while I’ve beaten the self-loathing, I still hang on tenterhooks, waiting for the day that my brain betrays me, but now I get to wait for the day my body does, too.

I was not in a good place Wednesday. Or Thursday. And I’m kind of still not today. I have good hope that it won’t take me a dozen years to figure out this particular life-long disease, but it’s still going to take some time. The answers I get from the tests will help. Those come in three weeks. But the fact of the matter is, the answers won’t change much. They’ll help my mental state and they’ll help treat my physical state, but they won’t change the facts. I have two life-long disorders. And that’s hard to swallow.

But, despite the pain of this bitter news, I’m doing okay. I’ve not expecting myself to just magically be okay with this. I’m giving myself space to process. I’m going to learn what life is like with an auto-immune disease and I’ll adjust. And, I know I can do it. I’ve done it before with Bi-Polar. I can do it again here. I can re-define myself with the disease without becoming the disease. That, as I adjust, I can own my life as I wish to.

So, while I’m scared and in the slow process of figuring things out, I’m feeling okay. I promise.

This is what’s up right now. It’s not super great, but I can handle it. Any hugs you feel like giving me will be much appreciated, because love always helps. But don’t worry. Please.

Because I know I’m little, and broken, but still good.

Yeah.

Still good.*

______________________________________

*Thanks to Lilo & Stitch  for the most excellent summary of how I’m feeling right now.

The rules may not apply to you, but they do me.

Okay, so the title sounds a little bit existential, but it’s really not.  Forewarning: this is a report on the DISASTER that has been the blue hair adventure – a DISASTER that I did not fully appreciate until last night.

I’ve wanted blue in my hair for about a decade.  Due to finances, mostly, and special circumstances, I didn’t get blue hair until this past May.  It was a SUPER exciting day – dreams of chunky blue danced in my head.  However, the appointment was canceled by someone in the store.  So, I show up, say I have a 12:30 appointment and they say I canceled.  We finally got it figured out when, while going over the price, I find out I was low-balled in a SERIOUS way on both time and money.  At this point, I’m frustrated and angry, but I’ve taken the time off work and I will just figure it out.  I let the stylist lighten the streaks, criticize my gray hairs (yes, I have plenty), bake blue into my hair (more on that later), and try to convince me that it was actually blue . . .

. . . But it wasn’t. This was the result:

Not so much, huh?

Blue? Not so much, huh?

So, I cried a bit and moved on.  Eventually (after vigorous washings and forcing tons of excess dye to come out), it DID fade to a really pretty blue that I enjoyed having in my hair, even if the streaks were a little less chunky than I wanted.  I finally had blue hair.  And people really liked it, so that was a bonus! I was getting more compliments on my hair than I had on my entire appearance the two previous years combined.  It was doing WONDERS for my self-esteem.

Fast forward to now, if you please.  Just under four and a half months later, my roots were getting a bit long and the blue was fading a bit to a color I didn’t like.  And next weekend, I’m going to a wedding.  I did not want the blue in my hair to look nasty and gross.  And, frankly, I wanted more of it for a LOT of reasons. One – awesome.  Two – when I do eventually lose the blue, I wanted to make the transition easier and more even.   After a quick check with Momma to make sure I wouldn’t be rocking the boat too much if I did a blue-on-top peek-a-boo for the wedding (no, though expect some comments from the Grandpapala), I went for it . . . with a new stylist.

This is where the trouble began. Thankfully, I DID know my stylist, Alison. I knew her as the wife of a roommate of a friend that I had gotten to know at the wedding of said friend. Come to find out, she was also the amazingly awesome and supportive sister-in-law of another friend. SHE WAS MY SAVING GRACE. If it had not been someone I knew, someone I had things to talk to about, someone who was anxious to please, and someone who I had a prior established relationship with, I would NOT have made it through everything that happened last night without tears and a huge, giant meltdown. Instead, we both stayed positive and helped bolster each other (this was a traumatic experience for the both of us).

You see, Alison is a student stylist. And while last night was a REALLY GOOD learning experience for her, it was tough.  A two, maybe three hour process turned into a four and a half hour run against the clock before closing time.  Three supervisors had to get involved (one of whom I also knew), because of the nonsense.

It started off as you might expect, putting lightener on my super dark hair so that the blue would show.  First highlights in foils, second painting on the roots.

Then, my scalp started *burning.*  I probably held off saying it was hurting for too long, but soon it was REALLY apparent that something was VERY wrong.  Very. So, to the sink we went to do an emergency wash of my scalp to get the chemicals off and pondered WHY IN THE WORLD I was reacting this way.  I’ve always had sensitive skin on my scalp, but it’s never been this sensitive.  I’ve done home dyes, I’ve had perms, I’ve had highlights, the works.  There is NO REASON WHATSOEVER that I or Alison could have guessed this would happen and having it happen was VERY frightening.

Let me be clear – I do not blame Alison or her school or her student status.  They did everything right and I would highly recommend her specifically and the establishment in general. (It’s Paul Mitchell School, for you Colorado Springers.)

Thankfully, by the time we were washing out, a lot of my hair had lifted to an acceptable base color. My roots were still too dark, but, as one of the supervisors definitively stated, “we don’t mess with chemical burns.” There would be no more lightening and we would just have to work with it.  I’ll admit, I was a lot less concerned about roots in that moment than I was about BURNING HEAD NARROWLY AVERTED.  Pondering why this was happening because history was NOT repeating itself, we went on to the next phase: the spot test.

The spot test was completely and totally not a phase we would normally do.  But, since my skin had reacted so violently to the lightener, we were not going to screw with this nonsense again. So, Alison mixed the first layer of blue dye – lowest volume of potentially abrasive chemicals – and put it on a small spot on my head.  We waited the required ten minutes.  All was well – not a blip on the radar.  Universal application started and the BURN came back a second time.

As my family, friends, and former roommates can attest – I am no wimp. I have a truly ridiculous pain tolerance (hence the delaying saying something earlier in the evening). But I IMMEDIATELY covered my eyes and said, “It’s burning again!” because – at this point – I was scared out of my poor little wits. Once was bad enough.  Twice, after a successful spot test, was truly terrifying.  What was wrong with my head that it was acting like this?  Second emergency wash out of the night. So, we got my scalp clean again and went to a different dye that was not as long lasting but WAS safe to put on even the most sensitive of heads.

Right around this time, Celessy called for our nightly call.  She is the daughter of a hair dresser.  In chatting with her, while my head was in the sink, something in my head shook loose and then fell into place in the fore of my puzzled conscious.

Remember this line from earlier: “I let the stylist . . . bake blue into my hair (more on that later).”

Here’s that later.  So, the first stylist who did my hair put the blue dye (which was a harsher brand to begin with) on the lightened streaks, wrapped it in foil, put me under a hair-drying hood for more than TWICE AS LONG as the product says to leave it on the hair WITHOUT heat.  Yes – this first stylist flagrantly flouted the rules laid down by the product AND her training.  When I remembered that I had gotten a bit uncomfortable under the heat and had to ask to get the heat taken off, I mentioned this to Alison.  Whose jaw dropped, literally.  She explained, in layman’s terms, why something that had seemed so innocuous was actually really bad.  And, of course, there was my burning scalp to stand as witness.  This was the ONLY THING that had changed between the last dye job and this dye job. It was pretty clear – after discussing the details of the first blue hair dye job – that the previous stylist had committed a pretty nasty act of hair and scalp damage.

With MY hair and scalp.  If this is something that this stylist does to her own hair – fine.  Break the rules on your head.  Apparently, without the consequences I suffered.  But don’t you dare, don’t you dare, screw with the heads and hair of other people like that.  Full disclosure, this woman works at MasterCuts in the Chapel Hills Mall.  I am mostly VERY happy with the staff there when it comes to cuts.  But don’t ever, ever go there for dye jobs.  This may happen to you.  The stylist assured me this is how she did her hair herself and I think it’s great she’s found a system that works for her . . . that hasn’t lost her her hair or scalp yet.  But to do that to me KNOWING, as she did, that this wasn’t just an unsanctioned system of dyeing hair, it was a flat-out COMPLETELY AGAINST PROTOCOL system of dyeing hair, was unconscionable.  And, in doing so, she damaged my scalp.  We don’t know for how long.  But it is still super-sensitive.  I’m going to have to be really careful about washing it for a while – gently and in COLD COLD water.  My head and heat are not friends right now.

Thankfully, after a mess and a half, I got my blue-on-top peek-a-boo:

This is under bad light and I'll try to get something better soon, but it'll do for now.  I love it.

This is under bad light and I’ll try to get something better soon, but it’ll do for now. I love it.

Alison did a wonderful job on the dye and the cut.  I love all the blue.  We’ll see how the family (and Grandpapala especially) like it in a week and a half.

So, please, to anyone who has a skill and uses it for others: FOLLOW THE RULES.  Don’t screw with the system.  If you want to do that on your own time and your own projects GO AHEAD.  But don’t do it to some one else.  I’m lucky.  I still came home with the hair I wanted.  But that could have possibly not happened.  We may have had to stop mid-dye if there hadn’t been this second option.

And lesson to me: ALWAYS USE ALISON.  Thanks bunches, hon.

In the mean time, I’m going to love on my sassy blue hair and take a shameful amount of selfies until I’m happy with one. And then I’ll make it the profile picture of all profile pictures.  I mean, seriously, people.  BLUE HAIR.  It is AWESOME!

_______________________________________

Many, many thanks to Jessa, Heather, and Rhonda (the supervisors) for coming when called every time something else went wrong with my hair and keeping me calm and collected as frightening things were happening. And of course, thanks again to my wonderful stylist in this whole adventure who helped me keep my chin up.

Transparent.

If you think mental disease isn’t real, look at me.

If you think systematic abuse of women just doesn’t happen where you live, look at me.

If you think living with a daily fear of violation isn’t necessary to survival, look at me.

If you think bi-sexuality isn’t a thing, look at me.

Look at me fight, look at me cringe, look at me tremble, look at me love.

Look me in the eye, and TELL ME MY REALITY IS FALSE.  But watch out.

Watch out for the anger, watch out for the fire, for the flood, for the slap-bang-pop of the hurt-rage-scorn.

Scorn of your willful ignorance, your patriarchal nonsense, your social and emotional indolence.

Indolence, laziness, sloth, idleness, apathy, inactivity – whatever you call it, it is a crime, a sin, a choice you make to ignore this world.

This world where my brain has been killing me slowly since I can remember.

This world where my lovers have also been my violators too many times to count, because though I can enumerate them, even one is too many.

This world where I cannot sleep safely because one of my neighbors has decided he owns the right to look at my body.

This world where I have found love in all sorts of people.

All sorts of problems, all sorts of pain, all sorts of words that sting-bite-ache.

Ache with their effective lies that permeate this culture.

This culture which tells me to sit down and shut up because my genitals and glands make my opinions-hopes-desires, not to mention rights-needs-demands, invalid.

Invalid because they demand-need-have a right to a shift-change-advance to something bigger-better-brighter than we are now.

Now is the time, now is the place, now is the moment to speak.

Speak I will, speak I must, but if you cannot stomach my words, you WILL stomach the silent message screaming from my eyes.

Look me in the eyes.

Look at me.

See me.

Then tell me I’m not real.

_______________

This has been sitting in my head, spinning around for a while.  It’s my first time working with the spoken word format, but I really don’t think these thoughts would have made it out any other way.  It’s been a rough year and a lot has been weighing on my mind about things I’m told I shouldn’t talk about.  I think that’s bull.  Complete and total bull.  Hear me shout, people.  Look at me.  I don’t hide.  I live a life that can be known by seeing.  Don’t take that gift – because it’s a hard one to maintain – and be adamantly blind.

That’s how problems like the ones I’ve been encountering start.

Let’s talk about the things we don’t do:

I really thought I had said all I had to say on the subject of the dehumanizing aspects of sexual abuse last week. Or at least all I really wanted to say.

Then, last night happened.

It’s been ridiculously hot lately in Colorado.  A lot of fires have been going and temperatures have been soaring.  I don’t usually skimp on the jimjams because of personal comfort and a general desire to be warm (even in the summer), but the past few nights I have significantly reduced my bed wear so that I can get any sleep.  Considering I usually look something like a mummy going to bed, this has been very uncomfortable for me, but necessary to my ability to hit REM sleep.  In the never-ending war between personal comfort and personal health, personal health always wins.

Why do I feel the need to tell you this?

Because last night, a man was standing outside my window (which is level with the sidewalk) as I was awkwardly climbing onto my tall, shaky bed.  It’s never a graceful process, but last night was particularly bad.  I’m sure he got quite the view.  Why am I sure?  Because when I finally got semi-settled, I saw him staring intently into my room through a 1.5 inch gap in my blinds.  No, the blinds were not open – I have a broken slat that hangs weird, giving a TEENY and mostly uninteresting view of my bed.  This is not uncommon in my apartment complex.  Most people who are decent human beings would see this slat and not look or look away, especially if they saw something like a girl struggling to get into bed whilst inadequately dressed.  Because that is the right thing to do.

Is that what this man did?  I think you all can guess the answer by now.

Mortified and horrified that I had been turned into this pervert’s very own peep show, I snatched the sheet to my chin and gave him my very best glare.  Ask my family – they’ll tell you it’s legendary.  Rightly put off at getting caught being a sickening creep of a human being, he moved out of my line of sight, moving him away from his view.  I proceeded to snatch up my phone to tell my best friend what was happening (because that is ABSOLUTELY what you do when you feel powerless and angry).  In the time it took me to pull up my screen for text messaging, the man had moved back into his peeping position.

Now, there are absolutely mistakes.  They happen.  You look at the wrong time and see something you’re not meant to see and that’s that.  Sometimes you’re even caught looking at the wrong time.  It happens and I appreciate the difficult situation that is.

This was not a mistake.  The man’s actions in that brief thirty seconds of attention I gave to my phone make it patently clear that even if the first incident had been accidental – though I doubted it at the time since it took several seconds of glaring to get him to move away – he had NO INTEREST in respecting my right to privacy or ownership of my own body.  It was his to stare at and he’d be damned if my personal wishes stood in the way.  I felt violated, objectified, and dehumanized.  And I GLARED with all I had. He left.

So, I started reviewing his looks in my head and looking at the time stamps of my text messages to make sure I had a clear sense of events that I could then pass on to the front office of my complex and police, if necessary.  I’m afraid my impressions were too hasty to really have enough information for the police, but I knew my complex could tell security to haunt my building a little more frequently.  Something could be done and so I had to be satisfied with what I could do.

I spent about seventy-five minutes calming down, tweeting back and forth with my sister (bless her for staying up with me), so I could actually fall asleep.  Every little blink and flicker outside had me jumpy, but I assured myself I was being silly and no one was so stupid as to come back after so much time.  After all, I’d heard a door open and shut after the second incident and so he clearly had gone to his apartment.  Who would put forth the effort to sneak back after settling down late at night?

Almost exactly one hour and fifteen minutes after the first two incidents, I caught him walking past my window, looking over his shoulder and into my room again.  It was horrifying, despite the fact that I was covered.  This man CLEARLY had hoped I had just let it go or not put too much importance on the events from earlier and was looking for another show – possibly while I was sleeping and TOTALLY unaware instead of just peripherally so.  Again, I glared.  Again, he shied away – busily pretending to rummage in his car, but not putting anything in or taking anything out.  All he really did was make his lights flash by locking it, all the while staring in my room.  I sat on my bed, sheet up to my chin, and glared.  And tweeted about it again, partially to siphon off the RAGE I felt, partially to establish a record of what was happening.  (Twitter, I love you more than I can say, considering this is the second police-worthy incident you have helped me record in the space of eight days.)

Thank goodness for stupid creeps.  Making his car lights flash in an effort to look innocent definitively pin-pointed which car was his, giving me more information than he could have ever wanted me or any authority to have. >)

Needless to say, it took another two hours for me to calm down enough for my head to stop snapping towards my window reflexively to check for the pervert.  I went to bed, I got crap sleep, and, as soon as I was able, contacted the front office and gave them a description, the license plate number, and make and model of the car.  Security has been notified and I was going to stay over at my parents’ place tonight as it was, so I am secure in the knowledge that this cannot last long, whether through discovery or disappointment.

What I didn’t expect was how much those small moments last night would impact me today.  For anyone who doubts how lasting small, simple incidents like this can be – let this be a witness.

  • I have felt less than human all day.
  • I have been jumping at co-workers outside my window taking smoke breaks.
  • A customer called me “babe” in appreciation for my help, which is not uncommon, and I felt physically ill.
  • This entire day has been full of triggers that would normally not trigger me thanks to last night’s events making me hyper-sensitive.
  • I feel owned, like I have no right to who or what views my body, nor when.

I don’t expect these things to go away after one night, safe at my parents’ place.  I fully expect that I am going to be feeling like this for a while – especially if I keep seeing that stupid white sedan.  But do you know what I felt that surprised me the most?

Shame.

almost didn’t call the office this morning.  I almost let a sexual predator get away with it.  Why?  Because I knew, previous to last night, that there was a small gap in my blinds and I wondered if I deserved sympathy, since I had not gotten the broken slat replaced right away.  Never mind that I had other things with a higher priority on my mind.  Never mind that I have a right to privacy in my own home, even if there is a gap in the blinds, never mind that his actions were aggressive and predatory – I had let that one detail slide and I was afraid that my problems would be minimized because of it.

If any of you doubt the reality of rape culture, THIS is the product of its rhetoric.  That as an experienced and forthright victim who has had to come out of the shame over and over and over again, I ALMOST LET THIS ONE SLIDE.  I know, with a first hand knowledge, what it is to be victimized and how damaging it is.  I know how desperately I wish to spare any person that feeling.  And yet I considered what might be the collateral damage of other victims perhaps a reasonable cost – and I am not proud of those moments – if it meant that I was never again told that the abuse was my fault.

This is the culture we have established.  This is the culture we have raised.  And this, as I promised last week, is the culture I will speak out against until someone does something about it.  I WILL NOT HAVE IT.

Now, let me be perfectly clear: I will be FINE.  I’ve suffered much worse at the hands of far more insidious a personality than the man I encountered last night.  I have the experience and the tools and the support that ensures that I will be able to leave this behind in a relatively short amount of time with a relatively small amount of work.  Besides my sister, I’ve had several friends reach out and offer support (or punches) in response to last night.  And I consider myself fortunate that I don’t have to physically and mental heal at the same time.  A few hours of mental terror can do a world of hurt, but scars?  Those bring a whole new level to the hurt and shame and recovery.  I don’t have to deal with that this time.  I will be fine.

But what if it hadn’t been me?  What if it had been a person who had never gone through this before?  What if that person didn’t have the tools, as so many don’t, to soldier through that pervasive cultural shame?  What if they didn’t know it wasn’t their fault?  That possibility scares me.  I hope that this ends where it did last night.  That the man realizes what he’s done, and the wrongness of the attitude that allowed him to come back for more without conscience.  But I don’t know if it will and I hope, with all my heart, that by reporting him to the right people, I have saved someone from feeling how I feel.

But I’m just one person.

Please, friends and strangers alike, when you see fringe behavior like this – don’t let it slide.  Speak up.  Speak out.  Even if it seems trivial, I promise you IT. IS. NOT.  Letting this fringe behavior go unreported or punished because, while it is predatory and aggressive, it is not physically threatening is part of the problem.  It is what allows these attitudes to persist.  It is okay because PEOPLE GET AWAY WITH IT.  So please, don’t let them get away with it anymore.

I have done my part.  I trust my friends will do theirs.  But it is about time you, the prevailing culture, do yours.