I'm tired of being sick.... I'm tired of taking pills... and I'm so fucking tired of the pain.... I want to be able to walk normally, to not need pills to sleep at night, to not need pills to live day to day.

I'm in pain most days, my joints lock up and I can barely walk up/down the stairs. I can't remember the last time I did stairs normally. Now I take the stairs just like a toddler. Very slowly, one step at a time, with a shit ton of fear of falling down them, especially my basement stairs. I fear that some day I'm gonna fall down them and hit head first into the concrete/rock wall at the bottom, and no one is going to be here to help me.

That kind of fear is exhausting. And I'm afraid of that every single time I go down to do laundry or up to put it away. I don't like being afraid of something like that.

I spend my days freezing. Today I'm wearing long johns under jeans, and under three shirts, I have two pairs of socks on, and I'm still under a blanket, and still cold. In the summer I don't run the ac all that much, because it makes me too cold.

Sleep at night is hard cause if I lay on my back too long, I get spasms and they last all night into the next day. If I'm on my side my hips hurt. So I take pills to help me sleep. That makes it hard when I wake up at night to go pee, I stumble around cause it's hard to open my eyes, usually that's 2-3 times a night.

My legs are constantly covered in bruises, some little, a few big. And they are like that all the time.

I'm so klutzy lately that over the summer while getting out of an inground pool, I tripped and now have horrible ugly scars on my knee and foot, all from scrapes.

I get blood work done at every visit to my rheumatologist, my psychiatrist thinks I shouldn't work because of all the stress my body is under, and the lens people donated money for, so that I could get it, doesn't really help anymore.

I have no appetite, I just don't want to eat. And when I do eat, I take about 4 bits before I feel like it's going to make me throw up.

Do you even know what I'm diagnosed with?
1. Bipolar
2. Circulating anticoagulant disorder
3. Hypothyroidism
4. Hypopituitarism
5. Increased prolactin level
6. Occipital neuralgia
7. Pcos
8. Sarcoma
9. Systemic lupus erythematosus

And yeah, I know I'm complaining about things that just prove I'm alive, but seven years ago, I was a normal girl walking around, without a care in the world. Now I take pills, so many pills, just to get through my day.

And as much as I'd like to sit down and not move all day, I still get up, get ready, clean my house, do dishes, make meals, babysit my nieces, and take care of my precious peanut. I still run errands, go to birthday parties, buy presents and grocery shop. Why, you may ask? Because life doesn't stop going on just cause I'm feeling lousy. So again I'll take my meds, and get moving, and be the best me that I can that day. I'm not perfect, and it's taken me a long time to give up trying. As long as I keep on trying to be the best I can be, I feel like I'm succeeding at life.

Sorry I spent so much time bitching today, I guess I'm just tired of pretending everything is perfect and fine, when in reality, I think I'm falling apart on the inside.

Be well....

The after effects from the greatest battle of my life seem to be never ending. I lost another piece of a tooth yesterday, and with that marked the last molar on my lower right side. I admit defeat, I'm in search of a good dentist now, one who will work with me, cause I don't have thousands to throw at extractions and plates, and that's my only option to stop all this. I'm actually starting to feel like the after effects are never ending. Sometimes I feel like I'm drowning, and quite frankly I'm ready to give up the struggle to have just a semblance of my normal life back.

So pray for me people. Pray that I'll find a dentist, and he'll do payment plans or something, because I've officially list my smile....

As I scroll through posts, and pictures on Facebook, I see pictures from people who I thought were my friends in high school, who I had so much fun with, and they are still hanging out together, visiting each other and talking. So that leaves me with the question:

Am I really that forgettable? Was I so bad at being a friend that no one wants to know me now? I know I only did high school for a couple years, and that I had a shit-ton of problems, but these were people I ate lunch with, laughed with and thought were my friends. Looking back though, I was never invited anywhere after school, and seldom included on things, but I did attend a few dances with them. I know I was crazy, and I did work part time after school, but should I be punished for that?

Sometimes I wish I had done things differently as a teenager... I wish I had stayed in school, and tried, I wish I listened to my mother more. Maybe, I wouldn't be so friendless as an adult. But then, I never would have met Scott, fell in love, and had my beautiful Grace. Life would have been so different for me.


I just wish I had those lifelong friendships that the kids I knew in high school seem to have.

I love my brother, I truly do.  He read my blog post from the other day that talks about how I was feeling down and out. He called me today to check on me, and find out why I was sad.  He's always been my best friend, he's been one of the greatest friends I could have ever asked for.  Truth be told, I was re-reading my most read blog posts the other night, when I was feeling down, and I almost posted a sappy statement on his page.  So close that I had loaded facebook, opened his page, and actually started writing something out.  Something sappy like "I'm so glad I have you for a brother and a best friend. I'm not sure what I'd ever do without you in my life."  Yeah, sappy stuff.

Sometimes friendship is like that, you just know you have someone that will always be there for you, to have your back, cheer you up, make you laugh.  I'm lucky cause mine also happens to be my brother.  He was there for me during chemo, when we had no car and I needed rides.  We would sit and talk, he'd make me laugh when I was feeling so lost and sad.  He even had the nurses asking for him when he wasn't with me.  He's one of the strongest people I know, and I'm lucky he's my brother and friend.

Scott just worked two full days at work. From like 10AM to 10PM one day, and 10AM to 830PM the next. Which makes Grace extra clingy and whiney, but thankfully he's off tomorrow so she should calm down again.  It's been sad to hear her say that she misses him.  He'd be gone by the time we woke up, and back after she's in bed.  She's a daddy's girl this week, ask me again next week and I'm sure that answer will be different.

I've got follow-up scans next month. Back at my check-up they found enlarged lymph nodes and fluid around my lungs.  They are pretty sure it's just the lupus acting up, but they asked me to come back in 6 months (August 25th) and have another scan done, just to make sure.  I'm only slightly nervous about this.  I mean, if they weren't super nervous about it, then I shouldn't be either, but I can't help but have a slightly anxious feeling in the pit of my stomach.  Ugh, cancer sucks, and so does lupus for that matter. Well at least lupus isn't a death sentence, a pain in the ass sure, but not deadly.

Well it's getting late, I've finally got my super hero asleep, and I want to watch a bit of TV before I fall asleep.  All the work I've been doing in this house has taken a toll on me, and I've spent today exhausted.  I was supposed to work on the bedrooms today but I couldn't find any motivation to do it.  I'm hoping Saturday I'll have more energy, I'd work tomorrow but Scott's home, and I want to spend time with my little family doing things that might be fun.  Although we have to grocery shop and that is not much fun hehe.

Be well all....

We were in the car headed to my appointment yesterday and Fight Song came on the radio. Grace was in the backseat belting out the chorus. I love that song, because the chorus is amazing. It really talks about how I feel lately, I will fight, be alright and really, I don't care if anyone believes me, cause I do! I'm gonna become a stronger me, it may take awhile but I know I can do it.

I know that sometimes the road is going to be dark and, sometimes I'm going to hate being on it, but I know I'm not alone. I've got great friends and family behind me.  I just hope the dark days will become less and less. Sometimes, I feel like a dark hole has swallowed me up, and others I'm riding on rainbows, feeling great. But today, I've got too much to do to let the darkness in. I'm going to be busy taking care of my living room, and making it look amazing.

Today is definitely a riding on rainbows day. I'm feeling great, and ready to take the world on. I'm feeling strong, and ready to go. Who knows, maybe today is the day my luck starts to turn around, maybe I'll have less pain, maybe I won't lose my breath so easily. Either way the day goes, I'm just a little bit stronger than yesterday.

So for now, I'm signing off to go get started on my day. I've got a lot to do.

It still amazes me that even when I've had a night as dark and stormy as I did last night, that I can still wake the next morning and feel hope, just a little bit, but it's definitely hope. Hope that maybe today won't be so bad, that maybe I will finally be able to laugh without pain. Then, while I'm getting ready for the day, and listening to music, just one song can help lift me up higher out of the despair.

I have a few rally songs for times like last night, but this morning the song that seemed to make things okay was Be Alright by my cousin Chris. For some reason this song really helped me today, and I really feel like I just might have a great day. That everything really will be alright.

I'm off to another doctor appointment, and while it makes me sad that we have to spend another day at a doctor, I've got a kind of hope that this one will be the last one for a year. They need to check the lens one more time, cause last time they made a change to it. Here's hoping.

I've lost 25 of the 35 pounds I gained while on prednisone. So I'm don't to a slim 235. I've still got at least 55 pounds to lose after the last of the prednisone weight come off but I've still come a long way from the 320 I was at when my father died. I'm still proud of all the work I've put in to losing the weight.

I'm still weak, and my rheumatologist thinks it could be causing some of my problems, so she wants me to work on getting stronger. So I've put renewed effort into getting my house cleaned up and respectable living. Here are a couple before and after photos of the rooms I've done so far. I figure since I won't have the van anymore, I have to make this house look great so I can have people over, seeing as I'll have no way of getting to anyone.

Sink area (I didn't think to take a before picture, but there was a fish tank and other things before I cleaned it up)

Here is my bathroom before

And my bathroom after

My kitchen before

My kitchen after

Ooh and if anyone was wondering, this is what a six year old Super Hero Grace looks like....

Everyone always talks about how I kicked cancers ass, but are we sure of that? Cause on nights like tonight, where something just doesn't feel right, and I'm tired of all the damn doctors visits and all the damn meds that I can't help but wonder, did cancer kick my ass?

After taking my 10 pills in the morning and my 9 at night, I sometimes just want to wave the white flag. Just throw in the damn towel, say to hell with it all and just stop the meds. Let nature and my body do whatever it wants to. I can't feel much worse than I do now. I take all these pills and I still feel like crap all the time. I'm weak, and tired. I can't yawn, laugh, hiccup or even burp without it hurting me. If you've been around me, then you know I can't even get a cough out without feeling intense pain.

Sometimes I just want to say enough! My own daughter doesn't know me at all. Not the real me, at least. All she knows is the shell I've become, this person who is running off to doctors all the time. They can't fix the problem, and I'm starting to think they never will. I'm just so fed up with who I've become after cancer. It's just seems so unfair. I fought so hard to stay alive, and I feel like I'm being punished for it.

This is not the life I imagined, or wanted. I feel cheated and abandoned. Sometimes I feel so lost and forgotten in this world.

How did I get here....

Who says an only child is missing out? My kid certainly doesn't think so. She informed me today during a snuggle session that she was glad she was an only child cause she didn't have to share my lap with anyone, lol. Way to look at the bright side of things.


She decided she was big enough to put herself to bed at night. All I do is listen to her read a story, then we sing a song together (usually child of mine, she lives that one), then I truck her in and go downstairs and she puts herself to bed.


This is awesome progress, considering until 1 year ago she was still sleeping in my bed, then she moved to her bed, but I had to sit on her bed with her until she was asleep, then I was able to go into my room until she was asleep, and now she has banished me downstairs. She's getting so big.


She had lost two teeth now as well, and according to get x rays at her dental checkup she had three more teeth under the gum line ready to pop up! She was never easy with the teeth, always did get them all at once lol.


Some days I feel like the new med regimen is helping, other days I don't. I guess some good days are better than none. Maybe this is a step in the right direction? I hope so!


mom is finally completely moved out of her house, and is now ready for the bank to take it back. My brothers Glenn and Gregg worked really hard the past three months to empty it out, move stuff to storage and move mom in with Auntie Robin. It's a little sad to see my childhood home become empty, and know that we no longer have it to call home. But its for the best, it's a really old house that's falling apart and mom definitely didn't need a place that big anymore. And it needed a lot of repairs.


Well it's getting late and I'm tired, so be well all...

So I saw my Rhuematologist the other day. She put me back on colchicine and added in 600mg of ibuprofen three times a day. So here's hoping it helps. I've forgotten what it was like to be able to walk and talk at the same time, to be able to breath, yawn, hiccup, sneeze, burp, cough or stretch without tons of pain.


I've been so exhausted lately, just flat out ready for a nap all the time.


Scott just got business impact player of the quarter at work. It's kind of like employee of the month I guess... Except the company wants to fly him out to Redmond WA for three days for a seminar and whatnot. Guess its a big deal or something. I'm proud of him, I really am, but I like having my nights with him. I hate when he works later and I don't get to unwind or decompress with him at the end of the night.


well be well all...

we went on a massive playdate on Wednesday after school. The other parents and I brought the kids to monkey Joe's in Danvers. It was awesome! I got to know the parents finally and I'm finally starting to feel like I belong. The kids ran around for 3 hours!! And all total, after food and admission in, it cost me less than $20. It was well worth the money to see Grace run around with her friends, and to finally be able to get to know the other parents. It was also great to hear the other parents tell me how great Grace is and that their kid adores her, and they talk about her all the time at home. It's nice to hear things like that from other people. I'm always nervous about sending her out in the world, and always ask myself if she's behaving, and using her manners, if she listens well to her teachers and other adults. So it was nice to hear the other parents tell me she's so good!


Easter was a big success as usual! The Easter Bunny sure knows how to treat my girl lol.


I forgot to pick up my plaquenal from the pharmacy, so I've been without it for a couple days now, and in all honesty I was shocked tonight when I yawned and didn't cry in pain. I've taken a few deep breaths as well with little pain. So now I ask, did I just found the source of my problem and why didn't anyone else think of it? I'm gonna give it a few more days and see how I do before I talk to my doctor.


well it's getting late, and I keep yawning, so I better go before I jinx myself and start hurting again lol.


Be well all

I just had a terrible dream, in it my father was alive, but only briefly and then I had to relive the pain of losing him all over again. And I'm not sure what's more heartbreaking, the dream or the brief few seconds where I woke up and thought "Oh thank God, it's just a dream!" And then realized while yes it was a terrible and heartbreaking dream, he was still dead and he's never going to come back. I cried so hard for so long, Scott held me, and in the end the tears dried up but the pain remains. In all my life it was one thing I never thought about, or even had nightmares about. I can remember dreams where I've woken up crying cause Scott had died, in one horrible tragic way or another, and those were few and far between, but never my parents. I just never faced their mortality, and now that my father is gone, and yes I'm aware it's been this way for two years now, I'm painfully aware of it now. And maybe I was deluding myself by ignoring it, and my father's failing health, but I tell you, I was not ready to lose that man, and I don't think I'll ever be.

I can't believe I haven't written one single word since November! NOVEMBER!!!! That's an incredibly long time for me to go without writing.  I love to write, I enjoy it and it relaxes me, plus it helps me get out all those pesky feelings that become too much to carry alone.  So this post may be long, as I'm going to try to explain everything going on in my life.


It started with a case of unexplained pericarditis. I had it, no doubt, but no one knew where it came from. Then a week later my face bloomed with a beautiful rash, a text book lupus butterfly rash. Only I didn't know what it was at the time, so I thought nothing of it, to be honest, I thought it was a terrible case of acne at first and I was so embarrassed!! I couldn't figure out why I would have acne, when I washed my face twice a day every day, and I washed my hair daily and I took care of my skin! But then the palms of my hands and bottom of my feet starting looking blotchy.  Well, when I had my follow up with my doctor for the pericarditis, she said she thought I had lupus looking at the rash. Okay, so now a new specialist. So we go off to the rhuematologist, and she starts with different medicines and the rash clears up, but the chest pain never left, and now my lower back hurt too. I couldn't take deep breaths, sneeze, cough, talk for long periods of time, burp, hiccup, sing, or even stretch without pain stabbing my chest and stretching out over my lower back. Almost a year later, and they still can't figure out how to stop the pain.

I had my FIVE YEAR SCANS in March, but I didn't get an all clear.  Scans showed fluid around my lungs, and a couple enlarged lymph nodes.  She thinks it's just the lupus, but she asked me to come back in six months to follow up on it. So I can't celebrate yet, but I'm hopeful I will get to soon.

My eye doctor has tried everything in the world to take care of my right eye. But nothing worked. It just continued to get worse. The foreign body syndrome (constantly feeling like something was in my eye), the dryness, and the blurred vision just would not get better. So he suggested I get evaluated for the PROSE Lens.  Its a prosthetic lens that looks a bit like a contact lens, that has to be filled with a special liquid and then placed on the eye.  There's a lot to it, and it's very involved, but I was evaluated and found to be a good candidate for it, so they started the insurance approval stuff. The lens is $5,000, FIVE THOUSAND DOLLARS!! But luckily insurance would cover 90%, so I just had to come up with $500. Not to bad, but very daunting indeed.  So we started a gofundme, as suggested by my Aunt Susan, and within 24 hours my friends and family (and a couple strangers) helped me reach my goal! So now I had the money, so I called to schedule the first of many appointments! I have to have it fitted to my eye, so its taking awhile, but I have my lens, it helps me see, and once it's fully adjusted for my eye I'll be able to wear it all day without a problem.  Right now it gets too tight on my eye, and I have to take it off and let my eye relax, I have no feeling on that eye so the only way I know its tight, is I start to feel bothered by it.

Grace started kindergarten in the fall and is doing great! The teachers love her, the other kids like her, and the teachers always tell us how great she's doing. She's reading, writing and even doing some basic math (addition), I can't believe how awesome she's doing.

Scott is still at Microsoft, and actually just had an interview to move up in the company a bit. I wish I could tell you what the position is, but my mind has completely blanked on it suddenly. But it would mean a more steady schedule and hopefully a pay raise. So fingers crossed for that.

I'm a softy, and I've always cried at the drop of a hat, but lately I haven't been. Normally I'd tear up during sad parts in movies or books. Sappy parts, sad parts, everything made me tear up.  Scott used to tease me about it.  But lately, I've been telling him I'm broken, because nothing makes me tear up.  Well I found out today, I'm not broken. I was listening to music and the song "Dance with my Father" came on (you know that Luther Vandross one) and cue the waterworks! Oh boy! I wasn't a great big soggy mess, but I had the tears coming down while I sang along.  And the one line that REALLY did me in? "Never dreamed that he, would be gone from me".  Yeah I miss my dad, still, like it was yesterday. So back to my ban on songs father related, lol.

Well I guess that's it.  I don't have much else going on right now, life is pretty good right now. So I guess I'll leave it at this point.

Be well everyone