2.28.12

Injection time... Ouch. They're getting bigger and more painful and I whine and complain and then some stupid kid comes in and makes faces at me for being a big fat baby.

Long day at work.

So, I'll be honest and open up, since that's why I'm here. We found another lump. It's growing. I go in Friday to have it checked. A little freaked out because it surface and if I'm told I can't go tanning anymore, I'll flip! There really isn't much more in the line of meds I can do except increase the chemo I'm already on probably but who knows. Maybe we can just cut the whole thing out and I can suffer with another "hole"!! Yes!

Holes can be hidden, hats can be worn, my once almost shiny bald head will eventually keep growing hair, but a tan.... I'm an addict. Lol. I have one vice, tanning.

Ok, gonna go sit and wait it out. :))

2.27.12 page 2...

No pinkeye!!!!!! Just sick. Happy happy joy joy

2.27.12

I said I was going to try to do better, keeping up with this... My sons Godmother passed away last Friday. She was an amazing woman. She left the memory in people's hearts that I could only hope that people would say about me after I'm gone. Her daughter has been so strong while her mom lived a life ravaged by the f*;@$!' C word. It makes me see my own daughter through a different set of eyes. All that she has been through taking care of me since she was 10... Now she's sick. She has a chronic illness that will follow her the rest of her life. She has a type of Hyper Eosinephillia kind of like I do, making her allergic to just about everything she can eat. We go in for testing for her next month. But the EOS markers are off the charts, like mine. Hers is really rare too. We did so much research already but there just seems to be more and more to read. She came home sick from school today, I had to leave work to get her. One of my co- workers asked me, when I returned, what was wrong with me today. I said, 'nothing.'. She persisted and I told her my daughter was sick and I had just picked her up at school to take her home. She said, 'so what's wrong with her? Why couldn't she just stay there?'. (mind you, this was in the living room in front of all the customers I work with and I didn't want all of them nosing into my business....and she's never had kids!) so I said, 'she's sick. Just, ... you know, sick...'. (obviously I wasn't aware that that response was not an answer.). So I got, 'well what's going on with her.' ugh. So finally, 'she has a chronic illness. She's probably going to be sick the rest of her life. We do all that we can to ensure her health but sometimes, like me, she just gets sick. Ok?'. Was that the wrong reply!!! (sarcasm!) 'like cancer sick?!'. ((OMG!)). No, I said, just sick! And I walked away leaving a confused and perplexed looking woman standing in the hall. I guess I can only have so much tact before my bucket is empty... Tomorrow is Cultural Awareness Foods at our all staff meeting. I actually made 2 separate treats. Cherokee huckleberry (blueberry really) bread and Norwegian cherry almond cookies. I hate almonds and allergic to cherries so at least I know the cookies will make it to work and not my belly! ;-) So I'm done with this for tonight. Usually I'm not so boring but I feel bored so if youre reading this, then now youre bored too. Ha. Thank you Ms. cupcake Topper for the ride tonight and for enjoying my bread. I'm glad you came over, as always...and never enough. Sweet dreams all. Xxoo

25 February 2012

Woke up sick again. Think I have pink eye on top of the allergies. Last week the nurse told me I have moved up to only 1 injection a week but the dose is high so I feel real sick. I'm still taking chemo, orally, once a day. 

For those who are new to my (life of blogs), I was diagnosed with HES in July of 2010. Hyper Eosinephilic Disorder is a disease that although it isn't cancerous right now, it mimics leukemia and can turn into cancer in the bone marrow if not managed and treated, continuously. 

So, I started on really high doses of Prednisone, 6 different antihistamines and I've tried a couple different types of chemo. This one now, Hydrea, is the best thing ever! Doesn't it sound crazy that chemo is the best thing to happen to me??!!

Anyways, I started a blog several years ago on a different social network but it's gotten old, hacked, not used, etc... So I figured I'd update! (That always cracks my kids up, when I update to new technology!) LOL. So...........

I push myself too hard. I don’t like admitting I’m sick. Really sick.  I keep trying to put on a happy face, I go to work every day, I do my classes full time.

I was watching this show on TV where the teenage girl was trying to take care of mom, but through drug use. 

Drug addiction is a disease just as is my HES. But it gave me flash backs to 10, 15 years ago when I was in active addiction and my kids had to take care of me. Sometimes I wonder if this disease I have now is a payback for the wretched way I acted in my addiction.

Friday, when I got off my overnight shift, I went to ACBHC to turn in all the last of my paperwork to get my certification for CDCI. Chemical Dependency Counselor I. A real counselor for the fight I also went through. 

NO one knows the hell of drug addiction except the people who have fought that fight. The person it hits, the kids who watch their parent slowly die, the parents of the child who is stuck in their addiction, then distantly the friends and family of those around. But the fight that person has to go through, it’s an internal struggle and it never goes away.

Sometimes I wonder how I got so blessed to have the amazing children I have. They never fail to tell me how much they love me.  (Even after all that I had put them through)...

We found out on Tuesday this week that Britty also has an HES strain. She has numbers in the hundreds! (They’re supposed to be single digits). She has it in the throat, esophagus and stomach. She’s on massive steroids now.   I printed out a lot of information but when I started to read it, I cried. I cried for what she might have to go through. I cried because I know how sick I get and I cried because I NEVER want her to ever feel anything near what I have.  She has been right by side through every flare up, every sick day, every treatment.  I cannot give her any less than 110% since she gives even more.

This is my first writing this year and I promised the kids that I would keep this journal going (through my illness) until I’m gone. So, I guess I just have to get back into the swing of it. 

I write a lot when I’m sick. My brain kicks into overdrive and it takes off. 

I have only 36 credits left and I'll graduate with a Bachelor's in Criminal Justice. I even made the International Honor Society! WHooohoooo for me!!  My dad jokes about my grades and wonders why I never got anything near this good in High School. Ha. I wasn't paying an arm and a leg in high school for my education. 

I also wasn't as lackadaisical about my personal/love life. Nowadays, I just live every day as it's my last. I'm not perfect, not even near close but my relationships, well, sometimes they are dysfunctional, some are unusual, some even possibly unethical?  HA HA (not illegal or anything but there are people who still bounce in and out of my life who haven't given up some things from .....dare I say it, as old as stupid high school behaviors). Don't judge. If you don't like what I say, don't read it. This is for me, for my kids, not everyone will like what I say...but it's me. :-) 

Journalism is the best release I have. My friend Brad suggested to Brit, when she a difficult day facing her new diagnosis, to journal. He gave her some amazing coping skills that I hadn't thought of.  I have been writing for years, he suggested she take it up, nightly, write in her journal, write about her feelings, her day, school, work, boys, her girlfriends, anything and everything. Kindof what I do with my HES journal.

Oh, for those who also didn't know, the kids and I agreed that when I got sick, I'd start writing so that when I'm gone, we can turn all these (blogs, journals, writings, whatever they are) into a book, so that others who go through illness- chemo, can see that they are not alone. 

I'm going to try to start my day. I feel horrible but it's my only day off and I have a crapload of stuff to catch up on.  I'll be more diligent in writing. As much as I exercise now, (my new years resolution with one of my bff's SHEILA to work out more often) I resolved to keep up on my writing too. 

KK <3