Posts from the ‘Health and Food’ 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

Quick lupus update!

Because I am knee deep in wedding planning (eight days, 20 hours – give or take a few minutes)*, this is not going to be nearly as long as the last one. Also, there’s not as much information to impart, so there’s that, too.

I went to see my rheumatologist today – yippee –  and the consensus is that everything looks good. Of course, looks good and *is* good are two entirely different things, so seven vials of blood and one cup of pee later, I was allowed to go home. (Sorry, by the by, for the TMI, but urine tests are a big part of health checks and not just for pregnant ladies. This is Just One of Those Things.) Max, it’ll take two to three weeks to get the results back. In the mean time, keep taking those pills and keep tracking progress.

I have not had any flares since I went on the medication. This is excellent. My ankle did decide it hated me yesterday and, if I think back on it, this is pretty typical the days after I wear my skyscraper heels. It looks like my ankles may not be able to handle skyscrapers sometime in the future and CERTAINLY I’ll have to approach them with greater moderation than I used to, but I think I can handle that. And, hopefully, skyscraper heels will be something I can still indulge in with that moderation.

I have not gotten all the energy back that I wished I would, but I’m still hopeful. After a body suffers from pain and exhaustion for a long time, it takes a bit to readjust. So, now that the medication is in full swing, I can concentrate on giving my body the rest in needs so it can restore itself after a long period of exhaustion and a smaller, but still plenty long, period of pain.

My hair is doing better. No more chunks coming out, but still a LOT of strands. I’m brushing my hair a lot more regularly than I was, but brushing still freaks me out a little, so most days it’s a ponytail or a bun to cut down on the need for brushing too much. However, it is getting BEAUTIFULLY long. 😀 I’m so thrilled at how gorgeous it’s looking and I’m really hoping to keep it going long for another year or so. It’s one of the few things I’m able to keep really healthy (seriously, hair stylists compliment me on how healthy it is a LOT), so I think I’ll be keeping the long hair around for a while, just because it’s one of the few things I have a little control over and that is consistently in healthy shape.

I am having to be VERY careful about the times I do or don’t extend myself. Now that I’m more aware of the repercussions, I’m noticing repercussions I hadn’t connected before So, time and energy management is HUGE and it’s lead to some really frustrating disappointments, but I think it’s also lead to a better quality of health (which is, of course, more difficult to gauge than disappointment). I need to do better, but I really only have three months of conscious practice in health, so I’m giving myself some time to adjust to the learning curve without being super hard on myself about it all.

Clearly, it’s not perfect, but it seems to be going in the right direction. And that is a really good thing going into wedding week. One less thing to worry about as much. I’ll keep you in the loop as things occur!

*Part of me would LOVE to make a ‘progress’ post on wedding stuffs (because there is SO. MUCH. STUFF), but I want this wedding to be as much of a surprise as possible. So, I promise, I’ll show you tons of pictures POST wedding of all the leetle details.

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.

A thank you note – or maybe a love letter – to @AmandaPalmer.

So, I got some bad health news today.

No – I really don’t want to go into it. There are too many unknowns for me to go into detail. That’s actually part of the badness of the news: So many “I don’t know”s.

But there’s a familiar process to getting bad news. Call the family, call the fiancé, call the doctor’s office, call the insurance company, maybe not in that order. Rage into the abyss of twitter. Talk to a couple friends and ask for their good thoughts and/or prayers. Pretend I can’t hear the tension in my voice, pretend I can breathe deeply, pretend my voice isn’t an octave higher than it usually is – tight with worry, pretend I can carry on a conversation when I know I’m rambling. Get everything done that I can then settle in for the long, arduous wait until everyone else does their part. Realize I might not get to see the specialist for four weeks. Realize I might not get answers that first appointment. Go through a dozen awful scenarios in my head before I realize my voice is just going higher and higher in pitch and that I’m almost hyperventilating. Hope the customers can’t hear it over the phone. Be grateful they can’t see me because there will be no hiding wide eyes that can’t seem to focus. Try to calm down. Do everything I can. Wait.

Bad news sucks.

And then, as the panic began to dissipate, my first coherent thought was, “I should tweet Amanda Palmer.”

WHAT?!

I have no idea where that came from. Why it was Amanda that my mind ran to after the necessities and panic. Why it wasn’t someone I knew.

But, somehow, it made total sense. It still does. Because Amanda is the person who tweets, quite regularly, “i love you” to her audience. Amanda tells people to have better days when they tell her they’re having bad ones and Amanda tells us when she’s having a bad day so that we can do the same for her. Amanda is genuinely grateful to hear when her music has made people feel something. Amanda truly cares and you can tell.

So, I started formulating my tweet and I realized I didn’t want just to tell Amanda that the thought of her made me feel better. I wanted her to understand that she was the FIRST THING my mind went to after I took care of my people and the panic. I wanted her to understand that it wasn’t just her music that appealed to me, but also her presence for her fans. And that meant I needed more room.

And here I am.

Here I am to tell Amanda thank you. Or I love you. It’s funny how those words can, and often do, mean the same thing. Thank you (I love you) for being around to provide comfort and solace. I love you (thank you) for choosing to share yourself with your fans. Thank you (I love you) for being a light – through music and social media – to so many people. I love you (thank you) for understanding that caring and community need not be limited to those in your physical sphere.

I really hope you see this. That you understand that is isn’t just that your personality and music brings a smile to my face. (Though this is still my happy thought that I’m clinging to until I get a call that will calm some of this panic.) That you understand that connecting to you and your fans has been a support system I’ve treasured in the last year. That you have made a difference.

Thank you.

I love you.

~Joie

 

 

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.

Pasta Day: Come food with me!

I’ll get right on writing Pasta Day appropriate lyrics to “Come Fly With Me.”  (Maybe not. I’m not the most clever of lyricists.)

The Set-Up

So last year, I discovered this artisan pasta company at my local Farmers’ Market, whose praises I will always sing.  Most flavored pastas are disappointing at best and unrecognizable as such at worst.  So, I gave them a test run and fell in love.  Pappardelle’s Pasta actually gets the flavors into their noodles, which makes for a symphony of deliciousness.  They also make sweet pastas, which is a thing I am sad to say I did not know existed until last summer.  With that in mind, I mentioned to my sister that I would love to do a true pasta dinner, wherein each course was a different kind of pasta!  Because, well, I could.

She agreed that it sounded like a wonderful idea.  We planned it for a night my parents were going to be out, so that we did not take over the kitchen in a pasta frenzy when they needed use of the counters and pots and pans.  We trolled the website for ideas and set down a menu:

  • Salad: Southwestern black bean salad.  The pasta blend flavors are blue corn, maize, jalapeño, and chili.  It’ll be a lot like a regular Southwestern salad with salsa, avacado, and cheese added in – just with pasta as the base. Served cold.
  • Fruit: Sweet fruit salad.  We’ll add some proper fruit chunks to the lemon, lime, tangerine, raspberry noodles, as well as a light sauce. Served cold.
  • Main Dish: Artichoke/Lemon/Asparagus ravioli.  We’re going to let this one be.  No need to mess with a beautiful, spinach and egg dough wrapped thing. Served warm.
  • Dessert: Chocolate and raspberry with whipped cream.  This one is less determined, but we’re going to home-whip some cream and possibly have some fresh fruit or syrup for the top. I’m thinking hot pasta with cold whipped cream, but Anli may override me.

And there we were.  I went to the Market this morning and picked up the first of our pastas, I’ll be going back next week to pick up the special order of ravioli and the dessert pasta.  We’ll hammer out the details and make a great meal on July 10.  With pictures, of course.

The Invitation

So, I mentioned this evening of pasta on Facebook a couple times and a lot of people (a surprising amount) were really interested in what Pasta Day was.  I explained, they said it sounded like something fun to do and so I told them they were welcome to do their own version.  And I offered this blog as a space to do it.

If you like, we’d love to have you RSVP in the comments or via my email (rjlouiseblogging [at] gmail [dot] com) as willing members of the Pasta Day.  You don’t have to use Pappardelle’s (they’re convenient for me, as they come to my local Farmers’ Market) or even do an entire dinner of pasta.  Just try something new.  Find a pasta that you’ve never had or a sauce you’ve never tried or a recipe you thought looked fun.  Make a casserole!  Make a salad!  Make a dessert!  Make up a recipe! Make your own pasta!  (I would not say no to a recipe for Stuffed Shells or homemade noodles.) I don’t care what you do or how you do it, but if you like, you are welcome to make Pasta Day a Thing.

Once you’ve tried your new flavor or recipe, e-mail me pictures of the results!  And, of course the recipe.  If you have a blog, send me the link to that!  You’ll feature as a guest post (hence why I’d like the RSVP, to give me an idea of how many people each are taking over my blog for a day) and have a chance to see the recipes everyone else put together.  Do it on July 10, do it in your own time, but do something new.  Try something interesting or strange or crazy.  I’ll be right there with you.  I mean, seriously, FRUIT-FLAVORED PASTA.

Just come, and enjoy the memories food can make, even across states and spaces.

And then reap the rewards of other people’s Pasta Day adventures.

P.S.  Feel free to share with strangers.  I don’t care if they tromp all over this space.  Especially if it means pasta recipes.