While 2016 has sucked so much, I'm not going to dwell on it.  I'm looking forward to 2017, almost the same as I did 2010. I feel a change coming, something good is bound to happen soon and I'm ready for it. Unfortunately I seem to be finishing out the year with another lupus flare, I'm declining again and it sucks. I've been without a couple very much so needed meds for the lupus due to insurance issues and it's screwing me up badly. So hopefully Scott with have a job soon and we will have better insurance coverage.

But hey, I said it earlier, 2017 is a new year and I feel a big change coming.

The second half of this year has been a hard one on my family. When Scott was working we just barely made ends meet, with him out of work it's impossible, the ends can not meet anymore. Somehow, we find a way every month to keep going, keep everything turned on (utilities and whatnot) and still have a teeny amount for groceries. We always make do. With God at my side I can make it through anything.

The stress of no job, no money, and my family falling apart was hard on me. Plus add in missing prescriptions because medicare just sucks (one with medicare is 240, but goodrx.com gave us a coupon and brought it to 90, riddle me that?). While that's a better price, we still can't afford it. So with missing meds and the stress of everything going on I ended up in an epic lupus flare up. I was so sick, I was in tons of pain, vomiting, weak, had skin rashes in in 3 spots, losing weight, dehydrated, couldn't get warm at all, and was sleeping almost round the clock.  I had to run a girl scout meeting during this flare up, and I put on a smile, led my troop and did a good job. But when I came home, I collapsed, I sat down and fell into a sleep for a few hours, awoke, got ready for bed, went back to sleep, woke the following morning, got Grace ready for school, then went back to bed. I probably slept close to 20 hours. When I started noticing pain in my side, and some other scary things I asked for the hospital, and I never ask for that, in fact I usually fight it (like the night I fell down my stairs and knocked a melon sized lump onto my head). I do not like hospitals, being a bother or taking care away from someone who might need it more. It's just who I am. But I did ask, I had Scott take me in, to the ONE hospital I despise most because it was closest.  They put me on prednisone and sent me home after a few hours, bunches of tests and fluids. It would take more than a week, plus getting a bit worse, before the prednisone finally kicked in. Now I'm nervous bout prednisone weight.  The past month was hell on me, my family, my house, and quite frankly I was so scared, and after the girl scout meeting, I thought I was dying. I really felt awful. And while I lay in the hospital bed, I lay wondering that if my kidneys were being attacked, or any vital organs, would I someday need a transplant, and would someone help?  The lupus affects my liver function tests a little, has for a long time but the counts are steady so it's not too scary. This was the first time I ever thought about what lupus means to my future, and I didn't like it. 

On this day 2009, I weighed in at 239. When chemo ended in 2010 and I could eat again, I held back on nothing. I ate a lot. I went all the way up to 320lbs just before my father died on 1/1/2013. It would take his death for me to realize that I was doing to MY family the same thing he did to us. My father was a big man and he always ate what he wanted when he wanted, health problems be damned. I didn't want to do that anymore, I didn't want to hurt my family. In the year following his death I dropped 100lbs, shocking doctors and others around me. In the years since I've maintained the same weight. Not always easily, because I do happen to have a big weakness for sweets, but I did. Losing the 10 pounds with flare has put me from 223 to 213, just 13 away from my original small goal. Now, I'm ready to head back to the gym, and get to working out again.  That might have to wait a while though, wish us luck on Scott's job hunt, huh? 

I never thought I'd see the day where I weighed almost under 200lbs. I ballooned up as a young teen and never looked back. Now seeing the number so close to it I really wanna make it happen. I'd like to lose another 20% of my weight, at least, but in all honesty, being under 200 sounds nice 

Be well all! 

Do you know that feeling, the one where you feel so low, and you just keep swimming, but it's getting harder and harder to keep your head above water level, and you keep trying to explain it to people, but they just keep describing the water?

I'm sinking, right back inside myself where I don't want to be. I keep trying to be different, I keep smiling, keep moving, but I can just feel myself turning into someone I don't want to be.

I need to get out, hang out with friends, forget who I really am deep inside. Which is truly a screwed up little girl afraid of her own shadow, and scared of being judged. I don't want to be that anymore, I just want to be happy.

I wish I could erase my past, forget the traumas that turned me into a messed up little girl. Erase my scars, never battle bipolar, and not experience things a 12 year old should never experience.

I need out of my head, if only for one day

I've spent the past 7 years showing my daughter how to love everyone and anyone. That being different is okay, and it's okay to for girls to love girls, or boys to love boys. Hell we've even discussed the whole, boys who feel like they are supposed to be girls and girls who feel like boys. We've spent time teaching her that there are so many wonderful people in the world that if she spent her time and energy hating someone because of their skin color, or the person they love, or if they feel different inside then she would miss out on some of the best people. I want her to know that just because someone is different doesn't make them bad. We tell her she should take the time to get to know someone for what kind of heart they have, and nothing else. 

This whole situation in Orlando has me so upset. I know the world isn't perfect, and I know there is still tons of hate that rages in some people, and those people will act on those feelings. What I don't understand is how someone can purposely target a group of people and cause so much violence.  Isn't this world supposed to be getting better all the time? Aren't we supposed to teach the next generation a little more love, a little more understanding and a whole lot of caring? How does so much hate go from one generation to the next without losing some of the power of that hate? 

I want for nothing more than my daughter to grow up in a world where people don't have to be afraid because of who they love, or if they were born in the wrong body. What is so hard for people to live and let live? People just want the same rights and freedoms others have, and I don't see how that's a bad thing.  How is loving someone, anyone, a bad thing? If you ask me, the world needs more love. 

I know I'll probably never see it in my lifetime, I'm not sure it will ever happen. But I hope that the world can keep teaching the next generation to love a little more, understand a little more, and to be more accepting of everyone, every where.

With every story and article out of Orlando my heart breaks a little more. I find it so scary that this is the kind of world we live in, that there is so much hate and anger. I feel like this tragedy is taking things in the wrong direction but maybe, just maybe this will help things go in the right direction, and more freedoms and rights will be granted. 

To my friends who are part of the LGBT society, know that I love each of you for you, and that I am raising my daughter to love each and every person, no matter who they love. 

There has been a lot of drama in my family this past month. And not in my little family of three, but  between siblings and spouses.  And I have to tell you it breaks my heart cause I always thought my family was something that I would have behind me, to be in my corner when I needed them. To love and be loved in return for always. But I'm afraid that may not always be the case. People are holding on to hurt and anger, when instead the need to put all those feelings into bubbles. and blow them away, blow those feelings so far away, just watch them float and feel the weight lift off you. It takes more energy to hold on to those feelings, than to let them go and feel free again.

My family is falling apart, something my mom feared would happen after she died, but now she is watching it happen and she is sick over it. She's been crying over this since it started and I just want to make it better for her, but I don't know how. It seems like anytime someone tries to calm things down, it only makes it worse. I need words of advice here on how to fix this, can anyone do that for me?

My mother always thought we'd fall apart after she died because I'm bipolar and don't always get along with people. She thought that with her gone, there'd be nothing left to hold us together. At the time she voiced this concern to me I didn't care, because I was holding on to my own anger and hurt. and I didn't want much to do with my siblings. As I've gotten older I've realized, I LIKE my brothers, I've always liked them, at one point I'd do anything to hang out with them. I now feel sad that as adults instead of growing closer, as much sibling sets seem to do, we keep growing further apart. I don't want to lose my siblings, or the connection we once had.

I just need all my siblings need to push restart, need to imagine all the hurts, and anger being put into giant bubbles and just blowing them away. Just come  back to the heart of the family and try to live peacefully.

While I was growing up we knew our cousins, and now my kid may not know her cousins because people can't let go and let God. Give your problems to God, or whatever higher power they believe in, and come back to the family.  I'm finding I miss my family, miss connecting with them, and being with them.  I hate being so distant from everyone. I want to be able to go back to family dinners and bar-b-ques, and pool parties.

I just want everyone to let go, and come back to the family. The family I had in 2009 when I had to gather them all together and tell them I had cancer, and they were there. They all backed me up, cried with me, and helped me get through the hardest part, losing my hair by shaving their heads with me.

So my plea tonight is to my family, please let go, please forgive, and please come back.

I had a friend, a best friend, from 6th grade up to just after my cancer diagnosis. Well, I thought she was my best friend, we used to work together, go out a lot, talk daily, and we used to know everything about each other.  Then I got diagnosed with cancer and she just disappeared from my life. As if somehow the cancer were contagious and she didn't dare catch it. Maybe she thought I was going to die, and doesn't know how to come back? But whatever,  fast forward 7 years, and I know I shouldn't care, I know I should let it go, but I miss her, I miss our daily talks, and our inside jokes. I miss calling her up all the time. I learned that she has a boyfriend, from facebook, and that she works as a school nurse in the town we grew up in, all from facebook. I should just delete her so I stop seeing all the photos of her with her other friends, the friends she's had since high school. I've been in her life just as long, if not longer than some of those people she still hangs out with.

Its time to grow up I think. Time to delete her and try to move on I guess. Its just so hard when I have so much trouble making friends. And she was with me just about daily during our teen years. The one I could count on and rely on, the one I could call for anything. I just don't have it in me to keep being hurt by her, even if she doesn't realize it.

Thank goodness for my other friend, who I met in 5th grade.  At least she and I can always pick up where we left off. no matter how busy our lives get (she does have 3 kids after all, and I have my 1). I wish I could meet more people like her who love me for me, for all the flaws and imperfections, that I have many of, just as I love her despite her flaws and imperfections, or maybe because of them.  For some reason I just don't feel like I fit in with the other parents at Grace's school. Maybe it's because I feel like I can't relax and just be me, the real me.

But that thought leads to, who am I really? I've put on so many faces over the years that I'm not even sure who I am anymore. I feel like a boat on the sea and all around me are little islands of who I've tried to be, for the sake of making friends, but which one is the real me? And will people even like the real me? Do I like the real me?

I definitely am not going back to the dark, scary, depressed, self injuring teenager that I was. But I'm not always bubbly and happy either. There doesn't seem to be any middle ground. Either I'm moody and sad, or I'm bubbly and happy. How do I find the middle ground for who I am? And who will like me for me? Who will take all my habits, good and bad, all my language good and bad, and my like of video games? I feel more comfortable talking to guys then woman, except a couple moms down at the playground who rock. But even then, how do I become comfortable reaching out? Making friends with them, what if they don't like me?

That's my biggest fear, is that people won't like me, they'll reject me and then I'll feel embarrassed everytime I see them. I hate not being able to set up play dates for Grace, or setting them up and she goes alone.  I want to go and get to know the moms, or dads, and feel comfortable with them. Do cookouts and what not. But I"m not sure I even know how to let my guard down anymore.  It was so easy as a teenager and I didn't give a fuck what people thought (although to tell you the truth, it killed me when people didn't like me).

I want Grace to be able to have friends over, to be able to go to someone else's place, I don't want her to end up like me. Alone at a keyboard, telling her secrets to the cyber world cause its the only place she feels like she can really let go. How do I prevent this cycle from happening to her?

I don't want my child to be like me, I really don't. I want her to have friends, and a social life,

Final thought of the day, does anyone like me?

I posted what I wrote earlier because I want people to understand me. I know whats wrong with me mentally, I saw it in my dad, and I've seen the deepest darkest parts of me. My whole teen life revolved around my mood swings because I refused to be medicated.  I'm very logical about my bi-polar, I see there is something wrong, I try to control any out of control shopping when I'm manic. When I'm on the upswing of it all, I feel like I'm pretty, like I can do anything, and I become super friendly.  Which isn't necessarily a bad thing, but being super friendly can attract the wrong kind of attention.  I dealt with that a lot when I was a teen, but not really in my adult life.

But I mentioned I'm logical about things. I know my limits with shopping, with how far my depression can damage me, with everything. My psychiatrist actually said I was different than most people with my disease in that I sought out the help, the medication and the proper treatment I need. And that I deal with everything so logically, I don't allow myself to completely lose control and over spend, or fall back into bad habits of the past.

I don't share for sympathy or for help, I share because I'm tired of pretending everything in my life is perfect, and that my health is great.  I'm well medicated but I don't think that everyone understands that I can still breakdown, I can still go super high, That when things go wrong in my life, I get devastated real easy.  My heart breaks and I cry a lot, I can't control it, I know its an over reaction (most of the time) but I can't do anything to stop it.

All I've talked about is the bipolar, but that doesn't ever cover the crippling anxiety I feel when out somewhere alone. I try to run all my errands with at least Grace with me, if not Scott. I pull into a parking lot, and can feel the anxiety start to build, I have to sit in the car and convince myself that I'm okay, there's no one there to hurt me, no one is judging me and that I can do this. And if by some miracle I can handle one store, I usually talk myself out of every other stop I had planned. I become a paranoid mess out in public. and I've even joked to Scott that I would be a menace if I had mace. I'd be macing every one that walked behind me and seemed a little too close, but just far enough back.

I need to relax before I go to sleep. Goodnight all

Most days are normal, run of the mill days, but then there are those occasions where the mood swings just suddenly come on and I can't change it.

Sometimes, even though I'm medicated, my mood swings can still swing out of control.

Last Wednesday Scott and I were driving home from my brothers garage in Manchester, NH, when my mood suddenly spiked. We were stuck in traffic and I was feeling restless and hyper, but we were stuck in traffic. I had glanced out the window at a truck next to us and it said "DEF filler under here" or something along those lines. I asked Scott what a DEF filler was and he jokingly said "I don't know, ask him" so I started to reach for the window button so I could ask, but Scott told me not to. This was out of character for me, but shortly after that I got the idea to smile and wave at every car we went by. Scott knew what was happening but he was powerless to stop it. I knew what was happening to me, but I couldn't stop. By the time we were out of traffic and back in MA, I had dropped back down to normal. I felt tired after that, real tired. I was ready to sit back and nap.

Then a few nights ago I went to a really dark place. It was scary and I was laying in bed crying, I was a wreck. I kept thinking about how my life had taken such an awful turn after cancer, how cancer had robbed me of so much that I cherished.  I used to adore my hair, my beautiful smile, my manicured nails and cancer had taken all of that away from me. I had dreams of having another child, or two, and cancer robbed me of that. I was devastated and heartbroken because everything that I ever felt made me a woman was gone. I kept thinking that if God was going to leave me in such a shitty place in life,then he shouldn't have let me live at all. I kept questioning what my purpose for being on this earth was. I felt like death would have been a better choice. It was such a dark and scary place. I had no feelings of harming myself, and suicide is definitely not an option.  It was just dark there, and awful. I hated having those thoughts, especially with my daughter in the bed next to me.. But its where the mood swings can take me.

I guess it's time for an update.

I've taken my writing off-line for awhile because I've been dealing with a lot of emotions lately, and I wasn't all that eager to share them.

First I should fill you in on my 6 year scans. With the 5 year they found fluid around lungs and enlarged lymph nodes, in year 5.5 the fluid is gone and the lymph nodes showed tiny changes to the smaller side. At year 6 they found the lymph nodes hadn't changed, but this time, I had spots on my liver. They scheduled an mri for two weeks later and that shows (and I quote): what appears to be cysts but it's too small to say definitively. Closely watch with future mri's". So I still haven't gotten the all clear, and I still have to go back in again in 6 months.

The PROSE lens wasn't helping, so they gave me two options, told me to think it over and come back in 6 months. My options were continue to deal with the slowly declining vision, or have a corneal transplant.  So I made my decision after the third time I had to pull over while on the highway cause something got into my good eye and affected my vision and I had to run my eye to get it out (totally not safe to do while driving, cause I can't really see anything out the bad eye). So I'm going to have the corneal transplant. They won't be using a real cornea from a donor, it will be plastic (i think, it's been awhile since the appointment), less chance of rejection.

I'm working with Dr Marsh at Marsh Family Dental to find a solution to my teeth issues. I see her Monday to get more information, so be on the look out for that update.

I've been having problems when it comes to food, everything I eat feels like it's sitting in my chest, making it hard to eat much of anything, so they want me to see a GI doctor.

Sorry this post is all about facts and information, but sometimes, I just don't like my emotions so I switch them off.

Be well all...