This morning after I dropped Grace off at school, I came back and put on the tv. As I sat here I paid bills, and then started planning my day. Mid thought i fell asleep, i didn't awake until after 1. I hadn't even realized I was so tired but being out for 7 hours yesterday really did me in I guess. 

I had lunch with my mother before we headed into Boston to meet with an orthopedist about my hip. Basically he said that a hip replacement could be in my future. I have osteo-necrosis, bone death, due to high steroid use. I go back back in 6 months this for an xray and follow up. He said if my body tries to heal the dead bone slowly I'm good, but if it tries to heal it too fast then I could end up with the joint collapsing, thus needing surgery.  He said if the pain gets bad to come in sooner. He offered a shot of cortisol into the hip, but I opted to wait. I can live and function with the pain now, figured I'd hold out until the pain got worse before doing that. 

The lupus is still iffy right now. Counts are through the roof, wish they could find something to keep this in check.

I haven't been to school pickup since the start of the school year and I miss my friends down there. I love when we get together and talk and have fun while the kids play. I'm gonna make more effort to be there, no matter how lousy I feel.

A friend and neighbor who has a boy in Graces class (they've shared more teachers than not so far) has an older sister who had outgrown a whole bunch of clothes that she bright over for Grace. Beautiful clothes and 2 pairs of boots! We are so lucky, especially cause my child keeps growing so quickly! Someone slow her down! Can I give her coffee? She's gonna be taller than I am soon!

Be well all

This has been one of my hardest weeks yet. I mean not even a week during the toughest part of my chemo seemed this bad. This week if it could go wrong it did. Let me give you a run down

Monday: woke up feeling great, feeling I could accomplish anything and that I finally had a handle on the chronic illness thing. I was done being sick, raising my middle finger at it saying fuck you I win. I cleaned my house top to bottom. It was beautiful, every part was cleaned and dusted, it was amazing to be able to do that again!  I was so proud of myself, I could now shut up my house for autumn when it turned too cold.

Tuesday: I woke up feeling a little worse for wear but still good. I decided I would use this day to rest up from my adventures the day before so as not to overdo it and piss my body off completely. I was a little sore, my feet were a bit swelled up and I had red blotches were the pain was, normally they should be warm to the touch but they really weren't, plus pain in my left hip. My mom messaged later in the day saying her computer was being strange, so after I got G at school we headed over. Now I know absolutely nothing about computers so I don't know what I thought I could do but figured time with my mom, my favorite person in the world, was just what the doctor ordered.  So I go there and of course have no idea what it is, so I said I'd have Scott meet us there after he got out of work. We spent the next few hours with my mom, just hanging out and having a good time. As the day wore on I was getting more and more tired, and then the chills started. By the time we left, the pain in my foot was so bad that I could barely walk, and my younger cousin walked me to my van parked on the street, yikes I'm old.

I had decided to go to bed early that night because of the exhaustion brought on from pain, and I was hoping some good sleep would bring me back to good as new. Just as I was dozing off my phone let out of a chime. My first instinct was to ignore it but curiosity got the better of me so I looked. It was a message from my sister D, our sister in law in California was just diagnosed with stage 4 lung caner a few weeks ago, and D was letting us know that she was being released from the hospital into hospice care, the doctors only gave her a few weeks left to live. Lung cancer is an aggressive bastard and by the time the doctors realized she had it had already metastasized to her brain and hip. I accidentally hit like on the message when I put my phone away, and didn't realize it til the next day, I felt like an ass, and this was not the news I needed before bed.

Wednesday: I woke up, got Grace ready and off to school and came back to relax before I had to get ready and head into Boston to get my scan results. Basically the doctor walks into the room and says "Congratulations! You're still cancer free! But there are a couple spots on your lungs that have gotten a tiny bit larger but only by the tiniest bit. You also have avascular necrosis, which is the top of your femur is dying due to lack of blood flow and is wearing away at the hip socket. So while you may not have to see me for another year, I'd like you to see a specialist for this. There is no cure for this, just ways to try to ease the pain." Did I mention the fever was still there? So exit one doctor, bring in a new problem and doctor. Wednesday night I was in rough shape, real rough shape.

Get to the van, it wont start. I parked on P3, did the bad luck seep from P2 to P3 finally? Did it follow me down? P2 was the floor were we had not 1, but 2 cars break down and wreak havoc on us during chemo.  I sit and wait a few minutes and try again, still nothing. This has happened before on those gross and humid days, sometimes after being driven it just needs a cool down and I definitely wasn't inside long. Few more minutes, tried again and it started right up. Made it home without problem.

Thursday: I woke up feeling like I was hit by a truck. I hurt and hurt bad. I had Scott drop G off at school, and a friend bring her home to me. I was feverish, hot but frozen, exhausted beyond belief, and by mid day I realized I had a UTI when I went pee and my bladder felt like it was trying to escape my body through my urethra, helpful. I called in for a prescription.  By bedtime I had a new lupus mouth sore, my 5th one in 2 weeks. I get one, get it cleared up, an by the end of the day a new one, in a different spot, pops up. Yeah thats happened 5 times now.  I spent most of the day asleep.

Friday: I woke up, could barely walk or breathe the pain was so bad. I wanted to curl up and never leave my bed again, but I got Grace off to school on time and came home to see Scott off to work. Shortly after he left I went back up to bed to watch mindless TV and sleep in a semi comfortable place, but between my hip hurting on the left, my head hurting on the right, and my back spasms on my back there was no comfort, I came back down, I didn't sleep a wink all day. G's godmother brought her home to me. By Friday night I was feeling a tiny bit better and the fever was finally gone but knew not to count on it.

Today I woke up and came downstairs and finally wrote all this out. I actually thought today was Sunday and that I really screwed up the weekend. I couldn't remember Saturday at all, so did I sleep through it? It wasn't until a moment ago that G told me it was only Saturday. OOPS!!!

This is life with chronic illness. This is life with a body that fought 8 hard long months to live and is still paying for it. This is what my life is like. The spoon theory is a good theory, and if I could find a better was to explain it I would, but the writer of the spoon theory had it perfect. I start my day with a certain number of spoons, sometimes more, sometimes less and each thing I do, from washing my hair to getting dressed costs me a spoon. Monday I was ready to say fuck you illness, I'm taking my life back, no more being sick! So illness came crashing in like the waves, and said it would show me who was boss. I concede, I lost big time this week, plus the news about my sister in law J, and my new diagnosis was hard on me.

I'll never be who I was, that I know, but the good days out number the bad and with each, I guess mini flare, there is healing. I need to find my new normal and its taking time to figure out the balance to keep my body and mind happy and fulfill all my obligations and promises as a wife and mother, and its taking longer than I thought it ever would. When I think I've found it, I overdo something, or God forbid forget to sunscreen and the lupus flares up to tell me to slow down, to enjoy life and the beauty in it and remind me to take time to care for myself as well.

And I'm happy to say I awoke today pain free, and feeling ready to live again.

Living with a chronic illness has been one of the most challenging things I have ever done. Do you know how depressing it is to not feel comfortable in your own skin? To awake in the morning with plans and to end up feeling so awful that you can barely leave your house. It's not all fun and games here.  I know I'll never be back to what I was before the cancer, I don't harbor illusions like that, but if I could just walk around the grocery store and NOT feel like I'm going to die, that would be spectacular.

It seems like every time 1 thing quiets down something else pops up. The flare up is over, and now they are concerned about the iron levels in my liver. So, hello new doctor, let me give you my life history too. I see that one next month to find out how to take care of that.

I've decided to become a mall walker. I figure if the outside is so bad for me, I'll just walk inside. Grace is excited to do it with me, so that'll be a bonus, I'll have a little friend with me. I'm gonna try real hard to get my life back into my control, and not let all this medical stuff dictate how to live.

Well I'm off to play some Diablo with my love. Night all

I'm really starting to hate my body and life. I'm so tired of feeling lousy, tired, sore and just really blah. I'm tired of all the doctors appointments and running around. I feel like every time I should be seeing the doctors less and less something happens and I'm back to being at the hospital once a week or so. I really just don't want to be me anymore. I want a do-over, a repeat, a chance to start fresh. I just want to feel like myself again, who ever that is. I'm not sure I remember anymore.

This is not the life I signed up for, this is not the life I planned. I feel like for every step towards health I get bounced back 2. I just can't do this anymore, I can't keep living like this. I was never sick and now in the past 7 years I've spent more time sick than healthy. How is this a life worth living? I just keep beating my head against a wall of a medical shit storm. How did this happen to me? Got no where to run, this life just keeps going on, and I'm fading into a medical hell hole, and I'm so sick of this fucking life and I just want to scream.

Why did God help me make it through cancer just to live in this nightmare? Why would he ever want one of his children to suffer so much. Death would have been better I think.

I'm taking my dark head, sick body and going to bed, I'll pull the covers over my head and start fresh tomorrow and try again. But right now I feel empty, dark, defeated and so damn itchy and in so much fucking pain that I need to not adult for now, I'll try again tomorrow.

I absolutely hate myself.

I hate what I've become, needing pain pills at night cause it hurts so bad I can't sleep.

Haven't I suffered enough? Why do bad things keep happening to me? Why does one shit storm end just so a new one can start.  Why does the lupus flare so bad? Why do I have to be so diseased? I feel so isolated and alone.

My poor child can't even cuddle with me right now and that's all she wants to do. I feel so awful.

Right now, probably close to 60% of my body is covered in a rash from the lupus. And it's bad. I'm going to put up some pictures that I took this morning. Every part of my shoulders, back and neck hurt so bad! It's like I've been cursed or something.

I really can't keep going through this shit anymore.  I'm never gonna look the same again cause I'm pretty sure this time I'm gonna scar. My chest,  shoulders,  back,  arms and legs are covered so far,  my upper torso being in the worst condition.

I just wanna cry. Ok I do cry, a good amount. Can't help it, I look and feel awful, and it just hurts so much. I wanna crawl into a hole, somewhere where I don't hurt so

Why did I have to fight so hard to live if this is my existence now. What was the point? How is this fair?

This has been one of the hardest times for me, between the lupus flare, and now thyroid levels being low I'm having a hard time. I'm sleeping a lot, like last night I fell asleep at 830pm and woke at 10 to go to bed, just to sleep until 730am. Did I mention the 2-3 hour nap yesterday? Today I've struggled to stay awake all day and get some housework done, but I feel like crashing now.

But now that I know what's been wrong this past month, I'm looking forward to feeling better, more like myself.

My psychiatrist added a new med to morning, and cut a night time one in half. She's concerned about the darkness that I sometimes end up in, and to be honest I am too. It's making me feel like I'm back in high school wearing long sleeves all the time, writing poems in my notebook while everyone around me just thinks I'm weird. And I was strange back then. Where everyone else was happy and going on with a "normal" life, I was hiding in my bedroom, or under the covers. I spent hours crying, hurting myself, running off and being promiscuous, and sometimes I even scared myself. When I was a teenager the darkness would get so bad that I really did want to die. I wanted to leave this world and all the heartache behind. I was tired of being the fat, strange outcast who felt more and more alone each day. I attempted suicide, just once, I took a bottle of Tylenol, caffeine pills and God knows what else. I had to drink the nasty charcoal in the ER, and that sucked. I told myself that my next attempt would be something different.

But I never did try again, and now suicide isn't even an option. I didn't fight for 8 months to beat cancer to give it all up now. But the darkness gets real bad sometimes and it scares me because it's as bad at teenage me.  The darkness just kind of creeps in and digs its claws in and takes hold, making me feel the things I hate feeling, think the thoughts I hate thinking, and it makes me cry so hard. The darkness is ugly and it's not a place I like being. I wish I could find the happy middle most people feel.

I have my daughter and husband now, and it's for them that I keep fighting, fighting everything. The lupus, the pain, the darkness, and all the exhaustion and every other illness I've got; I fight it all so that I can be here, be with them, watch her grow. I fight every day and everyday I get a little stronger, even if life keeps trying to knock me down.

I wont lie, it was a couple days before the darkness fully went away. But thanks to spending a day with my mom delivering Avon, that helped start driving the darkness away, then a wonderful daughter and husband who make me laugh so much, the darkness is finally gone for now. I hope it stays at bay for awhile.

I decided to re-design my kitchen, that means I pretty much get rid of everything in my way, like the table we never use for anything other than a catch-all for junk. The table I constantly walk into and leaves me covered in bruises. Yes I'm a klutz, I trip over absolutely nothing all the time, so a big table taking up half the available space in the kitchen was starting to be a pain. So I'm redesigning, I'll take photos when I've got it all organized again, but I'm hoping this will make our lives easier, better, and me feel less trapped by clutter.

Sometimes I feel like the clutter is taking over, and I just need to start making space so I feel like I can breath again. And that means big changes in our house, which drives my husband nuts to the extreme. Wait until I start in on the living room! I'm already dreaming how I want to do it, but I may have to wait til he goes back to work so he doesn't kill me lol. But first I have to finish the kitchen hehe.

Grace hates sleeping in her room, says her room is too scary. I know I caused this problem, but it wasn't just my co-sleeping with her, it's also a matter of, until we moved in here she was always in our room. We had no choice, we only had two bedrooms in every past apartment. So she stayed in our room until we moved in here and tried to move her to her own room. I'm wondering if there is some way I can move her bed into my room, and just move the dressers from my room to her room. I'm gonna have to go measure things and see if it's doable. If I can get her to sleep in her bed in my room, maybe I can get her into her own room at some point.

Well I've done enough rambling for tonight, and the neuralgia is acting up this week, really bad (maybe all the rain, not sure), so the pain which is a constant 5/6 has been notching up to a 9 by bedtime. At least it's not a full alarm 10, those suck. Those are take a narcotic pain pills and go to bed bad. And if that doesn't help, or if I start throwing up, then it's an ER trip, and we know how I feel about those. I've also been waking earlier than necessary, like today I was up at 545 and couldn't fall back to sleep, and yesterday I was up at 645. I don't need to get up until 715-745 depending on how rushed I wanna feel.

Ok enough verbal diarrhea, and it can get bad if I just let it go. Sometimes I feel like I just need to keep talking and I will chat about anything and everything, no matter how asinine it is. And the rambling just continues tonight, doesn't it? See what I'm talking about? I get started on something and then it just keeps going. But the pain is starting to creep up so I really do need to sign off now.

It's been 4 years since my father died, 4 long years. He was supposed to go into the hospital, get fixed up again and come home to us. If I had known that day would be my last, that he'd never come home again, I would have told him I loved him so much, that all those years I responded to his love you's with a smart ass I know reply, that I did love him, my teenage self just wouldn't let me tell him. I would have loved him better. He was supposed to just come home and he left me instead, he just left without a chance to say goodbye. How is that fair in any way?

I'm hoping that 2017 will be a better year for us, one with a new job for Scott soon, improved health for me, and continued growth and learning for my incredibly intelligent daughter. I can feel a big change coming, it's just around the corner, I know it. Good things will happen, with God all things are possible.

I'm glad no one can see me as I write this, because then you might see my red rimmed, swollen from crying eyes, and the fakeness behind my positive bravado. I'm scared, Scott's unemployment runs out soon and there is no way we'd survive on my meager disability check. I'm scared, and I hate when my faith is shaken like this, when I start to feel like God has forgotten all about me. I feel like a tiny rowboat out in the middle of an angry storm on the sea, and there is no land or light in sight. I'm scared, without better medical coverage my lupus will flare again, and that means more damage to my already damaged body. I'm scared, scared that, that maybe there is no Higher Power out there looking out for me, that my life has been nothing but good luck so far and it's run out. I feel like one of those woman who sit at a slot machine all day hoping my luck will change and instead of losing, I'll win my money back and lots more. But let's be honest? How many times have you seen a big win? Maybe my big win was beating cancer and it's all downhill from here. Is this the beginning of the end, is this where it all unravels slowly until I can't take it anymore?

It's dark in my head tonight, and I can't seem to find the flashlight. I know I'll get some sleep and be ok in the morning, but the darkness scares me. It's lonely, and I'm afraid that someday it may turn out to be that I've been standing on the edge of an abyss and one false step and everything comes undone. I don't want to be lost forever. 

I really planned on coming on here tonight and being upbeat, positive and yay it's a new year. But then I thought of daddy and the darkness crept in and seems to have a firm hold for the evening.  Just remember dear friends, as my daughter so kindly reminded me earlier, I am strong, and I will fight the darkness, because I don't want to lose myself, all the work I've done to get to where I am. I am strong, and I'll wake in the morning, and hopefully it'll be to light.