no more funny

I keep not writing because I only want to write helpful or useful things.

Then I realized if that's the case I'm not going to write much for a while.

My vision is going and my usual regular 2x a year eye doc visits to make sure I don't have plaq build up continues to show that it is STILL neurological.

So yep- in addition to seeing acid style streaks where if a cat walks by I see a long line of her across the room. I am now seeing blotches of black and red - like blood- but its not. It's just patches that are going - like langoliers are eating my vision. Which sucks.

And it makes me dizzy and I have trouble focusing. So in addition to any medication I'm on - I have to go out in the world and pretend its not spinning and whirling - and look at people in what MIGHT be their face - in what MIGHT be their eyes. I want to cry- I want to scream.

But I WANT FRIENDS.

I've been firing friends too. Some have been friends since jr. high... but they've been having a "rough time" with my illness... which doesn't mean they need to take space... it means they go away- far far away-- they dont' call or take calls, they don't send me e-mails to take mine... they just tuck in with their familes and ignore me. And I realize that some have been through multiple hospitalizations and they feel like - "fuck it -she hasn't died yet" so they're taking this one off... but that's not how it's done.

I had ONE really good friend Amy who said, "I am terribly depressed right now - so much so that I haven't anything to give. While I love you I haven't looked after myself. So I want you to know that this card is the only thing I have for you right now."

that card meant more to me than any visit or call all month in 2007- b/c I realized how hard Amy had it. If you're so depressed it hurts - picking up a card and addressing it TAKES EFFORT.

I go out and perform for people constantly and never tell them a thing about what's happening. I have but FEW friends in my life - but lots of people I know. And its getting harder and harder and harder for me to hold on. The doctor has these great hopes for one of 2 things. A remission after this big fat treatment she wants to throw at it - that I don't want b/c I just can't fucking take anymore - I don't care if I'm a tiger- even tigers need a pride of other tigers to hunt and care of each other.

Or - she's hoping that this one - this one just goes away... oohhh - flare. the 3 year flare that suddenly STOPS. wouldnt it be nice? all the strange noises i hear in my ears. all the medications...

i have had an infection for 2 months that keeps getting worse - WOULDN[T IT BE NICE.

self-care is a joke.

my poor animals... i gave moshe my cat's insulin shot, took her allergy pill, and tried to give her all my meds but realized at the last minute what i'd done and put them in teh garbage.

i dont know what i'm doing.

yet - i can be HILARIOUS on stage or out for a few minutes.

ask me to write out bills or do laundry or take a shower or make a telephone call and its like you asked me to move the empire state building 20 feet.

this. is. lupus.

enjoy.

Taking Care of Yourself

Taking care of yourself is hard to do if you're working towards it alone (without the help of a dedicated caretaker or live-in family.

One thing I worry about and try hard to avoid is clinging overly-hard to just one friend. I do ask my friends for help very specifically - "Jim, can you help with taxes?" or, "Mary, I would love a ride to class." because people feel more capable of responding to one simple request AND find it less overwhelming.

I struggle NOT to discuss my health outside my support groups and doctors. I fail at this daily... but I still TRY not to do it. This may sound odd- but it is because people don't WANT to hear it. They get queasy and feel strange. I watch their faces cringe up. If I find myself discussing my health - even if they asked, I will shift to something amusing - like a story about my cat or dog.

This seems dishonest- but I don't know any other way to live. Maybe there is a better one... but I'm not feeling very well right now. I'm struggling in fact....and when I DO go out - I want to be happy. And I can already see that people are looking at me shifty eyed. I don't want to be "the whiny chemo whore" with them. I want friends. I need friends.

And I get that TRUE REAL FRIENDS are, in the words of Forest Gump, "not something you find every day." But even people to make you laugh - or inspire you, or remind me who I am... I like that. When I go out - for just a minute, I want to forget that my nervous system is shutting down or that my eyes are seeing acid style visual disturbances through them or that every day is a battle right now to see who wins... The more I let my mood drop - the less I can keep myself HAPPY and up.

Meanwhile - I enjoy putting my focus and attention on other people. I always have. I enjoy performing. I enjoy caring about others. I'm a naturally nurturing person just as I'm a natural performer. ... Rather than struggle against these things -it works for me to go out more - attempt to suck it up sometimes. If I must stay in, ask friends to visit... and when I'm feeling good enough to go out - GET OUT!

Right now - though it's WORK- and annoying work - I'm letting my insurance work for me. I dislike doctors and appointments b/c it feels like I'm "doing sick." Yet- there are some things that are more "forward looking" than others. I purposely go to a neuropsychologist because we focus on cognitive function with the goal of finishing my dissertation, keeping my brain functioning, and strategies to work around the cognitive functioning I've lost. And I've lost a great deal. Which is a huge pisser.

I see my therapist weekly because it helps with both my emotional coping around fears and health and with relationships and how I relate with others. Sometimes I do not act or behave in a way that is healthy or wise - BECAUSE I'M HUMAN - yet I want to. My goal in life is to always be doing better - always be improving. Being ill or feeling sick is no excuse to let it all go to hell. In the past I've let fear get the best of me - but right now in my life - I'm actively working to actively work on living WITH illness not let the illness drive me into a different person than I'd actively choose to be. Those I must often make different choices- I'm still ME.

I go to all my doctors appointments no matter how annoying. I'm on medications that can harm my eyes - so I MUST go to lots of eye appointments, so I go. I go to all my silly womens exams too - b/c it doesn't make sense to get lupus under control etc and then have something equally shitty like cervical cancer I never caught. So - I go to dental exams and checkups too. And I follow up.

The other thing I find difficult is self-advocating. One thing I'm realizing is that if I'm on the telephone with someone - like a customer service rep who is cranky or being a jerk - I just say- let me speak to your supervisor. Because I don't need to have someone there who isn't my advocate. I need advocates. Even the other day- I was using a cane because the arthritis in my knees and ankles were acting up badly and I was swollen fairly badly that morning. And I was at the grocery store. I was getting some heavier things and had help putting it in the cart... but the baggers were both going on break and neither were willing to help me take it to my car. And I said, "I'm disabled, and I only need help with the heavy groceries." And both said, "I'm on break now, can't help." And I asked if anyone could help and they just shrugged.

And I thought - no sweat- so I asked for their supervisor. I just stood there with my cane. I'm NOT going to huff out angry. I don't need to. I needed help. A supervisor came over and I simply said that I needed help carrying my groceries out. She was CLEARLY ANGRY b/c both baggers were NOT on break - they just didn't feel like carrying shit out and I'm not old- so I don't look like I need that much help.... They seemed surprised I did that and she made sure I had the help I needed. Later I called my good friend Alex and he helped me carry the heavier items to my house and put them away.

Little things like this are my newest strategy- instead of doing it ALLLLL by myself - I'm asking for a little help. I'm realizing that I have some limits. And when I hit against one I ask for help. And sometimes I need more than others. Usually it's physical help- but sometimes it's emotional or financial etc... And I'm finding ways to handle this. Or ask for help.

I'm also learning to be flexible. Sometimes when I ask for help (even when it is within the capability of the other to do it) they will say NO. And that is when I have to handle it. Often it hurts my feelings and makes it harder on me. But depending on if it is a friend or an official person - it allows me to know better what I'm dealing with.

I've been giving myself "breaking down and pouting" time... and I'm finding this to be quite helpful... b/c I'm seeming to be much more resilient in the process... There are a few people who have stopped talking to me -- b/c they are busy or I was too much for them - or for any number of reasons... and I had to accept that. Life works that way. Painful. Sad. True. Weather and love are the two things you can neither predict nor control.

That said - I'm eternally grateful for the numerous friends who HAVE been kind and who HAVE been good to me. It makes me almost feel grateful when I say I am doing this alone... yet - I'm talking about getting out of bed or doing chores... I'm talking about my laundry that is sitting there clean but wadded up unfolded... or about driving myself sick... but I do want to say thank you for the kindnesses. They are not forgotten and they are very much something I cherish and that have meant something to me on the days I have most needed them.

Focusing On You

I'm trying to figure out how to reply to your comments - so I'm not ignoring you - just techno-ignorant. I'm also trying to figure out how to "follow" your blogs... I've been with Live Journal for too long.. this blogger stuff is more difficult for me. meh. I'm old school - give me a quill and a pigeon and a bottle of ink. You'll get your "blog post" from me in a month in your pigeon coop. Feed, write back, talk soon.

How hard can this be people?

Anyway- Today I was struggling with several key issues... my doctors are making me shore up my resources and root for myself. My friends are doing their own thing when I want them the most - and my neediness is either driving them away or not being recognized, and I'm needing to move in with a friend because of both financial and health reasons.

All of this sucks and it is all mostly due to lupus.

The other day someone said to me, "we all have cancer Melissa- we all have lupus." Trying to get me to realize that we all have a pile of shit to shovel. This is from someone who HAS recovered from cancer. But it DOES NOT make me feel better when I'm the one going through it. I don't have the desire or the energy to hold people's hand as they deal with their own fears about MY health. And mostly - I'm dealing with my own fears (and realities) of abandonment and lack of resources and vitality right now.

My health is lagging. My energy too. I lost my job and now owe all of my scholarship money to my university- thus I cannot afford to pay my rent for the next few months. All my living expenses have been screwed with too... And my doctors keep saying, "focus all your attention on YOU Melissa- not on the outside crap. YOU."

I'm supposed to say, "fuck it." And just focus on ME. Yet - my cats keep getting sick and my dog has allergies but I can't find her stupid needles. I'm having to pay for special foods and having to deal with trying to pack and move to another cheaper place to live with a friend who will take care of me during my next 6 months as I go through more extensive chemo.

Yet- I want more people surrounding me- petting me - giving me encouragement. I realize that people have their OWN LIVES... but... it struck me. I had a friend today complain about her bad haircut and dozens of people cooed over her and placated her and told her how she can rock it and how it will grow out. And I just thought... when I very haltingly told a FEW of my seemingly CLOSEST friends I was sick - I got NOTHING.

I'm trying not to "live in the past." And forgive. And yes- these friends have come around. And yes- you MUST FORGIVE. And yes - you have to carry on. And yes- you WILL be dealing with your illness ALONE. And yes- you have to cowboy up more than you want.

And today- I was just so terrifyingly alone - desolately alone actually - and a friend showed up out of the blue. And I was so happy. Just so happy. I almost cried I was so happy. And we just sat on the sofa and had some oatmeal cookies and chatted for a bit. And I try so hard to soak in those moments of gratitude for friendships and for people going out of their way like that.

I realize that as I get sicker, I can go out LESS... and I realize that as a person who is an EXTROVERT- I have made my life GOING OUT, being funny, being social, doing for others, amusing myself by being amusing... and so a big part of who and what I am - volunteering, and listening, and talking, is going away simply because my outlets are no longer available to me.

And as I get better, these will open back up. But the problem is - the world doesn't stop when you are sick. And try as I might- my friends are not coming to me. I'm asking - I'm very much asking... but it's like they are afraid. I don't know what they think they'll find. In some instances it's a block from the restaurant where we were going to meet... but I was too tired to go-- but would have LOVED to have 30 minutes of hanging out time. And it's hurting my feelings to have 2-3 even 4 people stand me up per week.

And people just text me, "sorry- something came up" 20 minutes before they are to arrive. And I am SO USED TO BEING STOOD UP- that I'm more surprised when people come- then when they bail on me. I'm not even hurt anymore- because I KNOW things happen. Flat tires and real life and illness and stuff -- STUFF comes up.

But that doesn't make my lack of social time any easier. And slowly I feel more and more invisible. And I drag myself out when I can - when I'm able - to improv practices and to stand up practices - to knit once in a while... and the more I go out- the more I get yelled at by my doctors because I'm so immuno suppressed. And the more I go out- the more I have to sleep and sleep and sleep to make up for the energy I use to get dressed and get there and be sick all the way there and find bathrooms for my exploding ass and my exploding projectile vomit.

And none of this is what I talk about when I visit... I just want to be normal and catch up and laugh.

The neuropsychologist today kept telling me that I MUST focus on my goal(s)... that if I lose sight of actually getting my dissertation done and getting the PhD - no matter HOW silly it might really be - then it will stop mattering. SOMETHING has to matter. Something always has to matter... and by making it matter - I can put it in my day as important - and by focusing my life around my health and my rest and my writing and my dissertation and my improv and such- I can focus my life around getting better and laughing and healing.

And in the end - all I want is to teach people and focus on helping other people and showing them their infinite potential. Because of all the fucked up gifts to have - that is one of mine. I can look at people and see their talents and how awesome they are underneath all their fears and doubts.

Lupus sucks and cancer sucks and chemo sucks. But what sucks worse than all that- all the fear and sick and doubt- is being alone while I'm going through it - phones that dont ring, visits that don't happen, hugs that never get made, dinner plans that fall through, tea time that never gets had a quick e-mail that never gets sent each day just to cheer me up .... these are what I REALLY WANT. These make my life bearable through the horrors of what I deal with... and when I dont have them - I might as well already be dead.

And I know my doctors keep telling me to focus focus focus and pull my strength in and FOCUS ON MELISSA... and so I am. But I'm taking a few minutes off to cry tonight and feeling sorry for myself... because I deserve a little of that too... and tomorrow - I'm gonna cowboy up. And if you find me a little more selfish and a little less soft and a little less willing to "give" to you -- it's because my doctors are telling me to FOCUS ON MELISSA and pull in every drop of strength FOR ME.

I've always thought that love shared gets bigger... and maybe it does.... but right now - when I feel so diminished and sad... I feel like every bit of love I've ever given to people who find me invisible and intolerable right now... who see me as polluted and polluting right now... I regret the love I've given you. And in a way- the love you've given me- because it made me needy for more.