For my brain flowers:

This is the most frequent response to my most recent cries for help. I do have a lot going on. I’m a teacher, and I love my job very much which means I tend to it at least 60 hours per week. I want to be a better teacher and impact more lives, so I’m in school too. I don’t just sit with my fingers up my nose either. I’ve maintained A’s so far. That has taken work. In being passionate about my work, I’ve lost friends who aren’t hip to the grind. It takes a lot to build. It doesn’t take a lot to maintain.

I am being sued. Not by anyone who I’m worried about. But they’ve done enough to make me respond accordingly and work to get them checked back into place. I’m also moving. And breaking my lease. This requires me to search for a new place and a replacement at the same time. At least I’ve crossed the bridge of packing most of my stuff. And improving my credit. Pray I receive a good news phone call about a place in DC.

There’s enough hours in a week. The biggest moguls have found them. Plus they have time for pampering. I can do it. I’ll find balance.

My routine of self care has only made it to the half way mark. Since I’ve attempted to take control of my own life and health, and was told to sit back down and let my ego go, I’ve been working to rebuild the effective routine I had before. It was meal planning, yoga, homeopathics, actual prayer and not that bull shit you do when you’re late for work or grateful that they didn’t notice. I was really good at living on grass and salmon and only smoking with meds and not just when I wanted to. Sleep and meditation was on point too. That was about 3 years ago.

Yeah it's been a while. I've been busy with life. I found the only way to get back into healing better and being independent was to just get back into it. It took some work rediscovering what I could do after so much weighted on what I could no-longer do. I actually made lists fully considering what my body has been through and what it needs to move forward. Things I can do at home, Things I can do for work, Things I can do outside for fun... After some trial and error, some stomach and joint flares and recoveries, I found that I am fully capable of the life I was aiming for BEFORE I was diagnosed. May sound simple enough, but maybe someone else can recognize the energy it takes replacing the energy that was taken away from LIFE by illness.

I started to volunteer for a number of community events. My goals included giving myself a future commitment and following through. That can be a challenge enough when your stomach or muscles lack damns to give about your schedule. I would find myself feeling like a 65 when I was hoping for a 85, and still making it until the end of the day. Most importantly, I was learning how to take care of myself in between "jobs" which made it easier to keep doing them. Yes, I did call out of a couple of shifts I felt below strength but that's why I volunteered; it was "work practice". Today is my second interview for this fly (part-time) job that will aide in my independent survival. (Wish me goodness!)

I also began reevaluating my relationship with my medications. I'm still working on it though. I'm discouraged to feel that Humira is aiding my fatigue and slow recovery when it gave me such a boost towards feeling normal. It's important for me to decide, for my own quality of life, is it worth dealing with the side effects of this medication or can I give my  body a chance to heal in another way? I am now in a situation where I'm learning first hand that no matter what kind of cooties or non-cooties you have, the medical system is more set on maintaining your need to pay them, than actually getting you better. Maybe this whole biologic thing is just another way to keep me tied down, physically and financially. They have recently added different medications to my regime but my gut says detox. *shrug* I'm not a doctor. What I do know is it's ultimately my job to heal. No one is doing it for me. So I'm not going to live by their word when they said it's impossible.

And speaking of impossibilities, it is possible for a well minded, healthy, (fucking taller than me - yes!,) beautiful, mascuine lesbian to give a damn about a 80 year old crippled woman trapped in a 26 year old body. More than getting damns, I get emotional and physical support, held when I'm hungover from drugs, pushed to eat soup when I'm hiding from symptoms, someone to cry in frustration and conquer it with... a lot of goods. I've gotten many different reactions on the topic of dating someone that's sick. Apparently, it doesn't outweigh the laws of "what's meant to be". I learned that with any healthy relationship, there's degrees of mutual respect, communication, and empathy to say the least. How it looks when your sick, just more time together in waiting chairs. I wouldn't give my time though without her consideration of my health. Just like it took time for me to understand what is what, she'll need time too. The fact that she's taking it...is so damn sexy.

I'm doing well. I'm handling everything fine. I wanted to curse out the children in frustration, but instead I offered them books they're currently enjoying. I wanted to crumble in bed all day, but instead I worked by my shrine and pretended the grey clouds gave sunlight. I resisted the urge to make some pitiful phone calls. I think it has something to do with Mercury and Mars kinda growing tension today. I want to believe that. It brings a comfort of greater meaning to today's stresses.

You have been some of my joy today. How are you feeling? and are you handling it the best way?

I like to think that I have fair friends. Those whom I'm allowing the title, I'd like to believe, do their share of well wishing, or prayer sending, or checking in when they can. I'd like to believe that even now this minute, if they're doing anything that has to do with me, it's good. That's if they're doing anything that has to do with me.

I'm realizing, however, that some of those folks require some reciprocal energy that I thought I was at once giving, but maybe not. I mean, I pray for my friends, I'd like to send them extra-gay-ass texts to make them feel good, I like spending my slim income on trinkets for their purses or homes or cars. I like to do whatever I can to help them take the best care of themselves, and if that includes giving them space or intervening, no problem.

Somethings I can't do for my friends: accompany them to the bar/club, help them move, eat their food, freely travel with them, join them in activities that require long walks, neglect sleep with them, take shots with them, go skiing, no-strings-attached sex without needing some nursing (cause NSA-sex seems to be wilder than SA-sex).

I mean, I ask these people to understand this and a number of other things, because I'm ill, and until my body gets better in it's functioning, this is the way it is. I feel like when I'm the worse, I'm the most alone. While I'm stopping life to spend more time at the doc and in my pajama's, they continue to turn up without me. Without a over the shoulder glace to throw me a wink most times. I don't really expect folks to die down because I am, but damn. Can we catch a movie? Are you totally busy at happy hour everyday? Or do you not care to just sit in calm, quietness, with your dear sick 'friend'? 

Maybe people save that visit for when they need some extra nice Karma or there's too much guilt in their lives but not enough for out right community service.

Or, they're just my friends, living their lives. And it's great. It's lovely. I'm happy for them. I just thought since we were so nice and supportive of each other before, that I wouldn't be left on my own to deal with this nice winter-flare.

Maybe the thoughts or support for my life will turn back up once I'm "not sick". *shrug* 

I can be heartbroken again and again, each time I'm not well enough for the world and the world is too "good" for me. I can get angry all over again at everyone I told I'm down and who didn't respond. Or, I can just keep loving my friends, and remember that it's not all like that.

I'm looking for health insurance. I'll be 26 soon, and no longer covered under my parent's policy (which was the miracle the past two years itself). I'm well enough to still be an active participant in society but not enough to work outside or live alone. I want to go to school again, but it's going to start at a slow pace to be sure I don't school myself into flares. I'd like to work somewhere else, at least part time, but that is outside of my possibilities right now, as there is no other worthy job available right now within a 50 foot radius of my bed. 

I'd like to have insurance, so I can continue to stay well. I'd like to keep my insurance so maybe one day I won't be "disabled" and maybe set to survive on my own. I'd like to keep it so I can stay on the right path to remission and not lose my medication solely because of financial reasons. 

But not too much is working for me.

I am discovering the level of difficultly tied to my situation. I could get a job, and get group coverage. Who wants to hire someone who's body... I won't get into it. Regardless, after day three/four of getting fully dressed and leaving, I'd quit anyway, if I'm not relieved due to medical reasons. And nevermind the fact that I wouldn't have coverage for the meds/specialists/tests/therapy I need to keep said job for the first year at least. Soooo, go private policy.

Yeah right. Pre existing condition. (I'm not telling them I smoke.)

Like the company who is currently covering me now is even hemming-and-hawing about what coverage the can have available for me for my budget (which isn't a lot to them, but a whole hella lot to my social security check).

This shouldn't be hard right? All I want to do is continue to see the doctors I'D LIKE to see and not the ones left to the masses who can't really help with my condition. I'd like to take care of myself without my checking account being taken advantage of. I'd like to do this all and still afford things like FOOD, VITAMINS, and other BASIC LIVING NECESSITIES. 

I'd like to live independently. It requires health coverage. Why make it easy for well people, especially those who take for granted their wellness, and take it away from the people who actually need it?

When I was early in my world of illness, and in the middle of the wildfire of friendships ending and relationships skewing, I found myself learning to accept solitude. I called it "being in my monk". It gave my loneliness purpose. I had to make drastic life changes at a pace faster than my friends could deal with accepting and one by one they drifted farther from me. I believe I was too shell shocked by the gravity of my situation and the "betrayal" of my friends to think about how I would be affected romantically. (I do understand now that those people did not betray or abandon me. Some people just don't understand, and aren't capable of being good for you if you're chronically ill. I had to learn that.)

It wasn't until I began to panic and think that I would live a single sick woman forever, that I started to label my solitude with "celibacy". I concluded that because I needed such a deep commitment from others to empathize so much with my needs, it left no room for bullshit. I couldn't deal with another "seasonal" relationship while carrying such a sentencing weight. It greatly raised my standards in the friends I have, the things I do or places I spend time. I further solidified each new effort to take care of myself, as I figured it was true I needed to do so to my own new standards to attract others that can do the same. That left me hoping for that single Nemo in this sea of confusion about what it is I really wanted. I can't do that much swimming, as my joints are swollen around my laptop now.

Then a greater grief hit me. I started to consider what it would be like to date a sick person (even as beautiful and loving as myself) and it seemed unattractive. I mean, I don't like going to the doctor but I'd hope my girlfriend come with me to a few of these hard ones. It's not sexy when I inject myself, but she'd see that if we lived together. I've been very horny, but physically unable to satisfy myself, let alone anyone else, due to the stamina of my fingers. My big joints will fall apart after two straight rounds of love making and we'd probably have to wait a week for me to get fully strong enough again to do it again. Maybe not bad for a more settled couple but that's a damper on my honeymoon stage. 

It was a horrifying thought. That there wasn't a single lesbian of color in the world, strong and able bodied, willing to love someone who can't leave the house everyday. How would I even get out to meet her if I'm housebound? Will I meet her in line at the pharmacy? Or in a lobby? Or will she be a tech at the hospital? (Now that's a hot one.) My friends would say "Mel...stop trippin'. You're beautiful, you're young, it'll happen, stay lovely". These are the same people that don't know what I look like outside of my dressed version in their living rooms or at the movies or the restaurant. I wanted someone to know what it looks like after I fall apart at 7pm and still tell me I'm a catch.

I had tried reaching out to chronically ill persons to discuss this. I know not everyone was happily married and supported BEFORE symptoms. I was looking for the success stories that would inspire me to keep plucking my flowers and wait for princess charming to ride by on her carriage. Then I realized quickly that effort was pointless. I would have to do what well people do when they want to learn how to date in their circumstance; trial and error. 

I dipped my toes in the water and held my "celibacy" light high as it shone brighter than "I don't want a physical relationship because I'm sick". I met a couple people and like even the healthiest of people, I thought some were idiots. I'm glad to not have encountered the worst of dating experiences (although some were pretty awful), but the greatest part was what I learned about myself. I had, and still have, the opportunity to reflect the person that I am onto someone else giving back to me their own light. I learned that I didn't need to hold my illness out as a shield against being hurt, let down, and flaring at the same time. I've learned that I in my other faces, as a friend, a nanny, a cook, a poet, an accomplice, a giver... that I have enough to draw in the kind of people, and eventually the kind of lover, that will hold all that higher than my physical climates. I've learned to nurture those other parts of me in a way that helps me get a step ahead in my wellness everyday. I have proven to myself that I am still just as deserving, and worthy, of honest, genuine, loving companionship without the fear of being left alone when I'm at my worst. 

My stomach felt fine this morning. I just tried to eat breakfast and take my meds for the first time in a while without smoking weed first. I got through a third of my extra small bowl of granola and rice milk before I started feeling nauseous. Then I poured a glass of some more milk and after my first swig of that, I've thrown up everything. And now have to "start over". 

My stomach feels like something is bubbling and boiling inside. My head is growing heavier and heavier. Major reflux. Still have 7 more pills to get down...

Fuck it. I tried. My stomach says I need to come a little harder if I want to keep food inside because nothing will get past it's gates unarmed. I understand now.