Things not to say to people with MS, people with cancer, or just people in general

Yes, it's me - alive and fighting my leukemia. I am legally blind at the moment because of low platelets (these cool things that make your blood clot) and retinal hemorrhaging (cause eyes don't like to bleed). So I haven't blogged in awhile. Things are a tiny bit better and I have the screen magnified and I felt like blogging.

I'll get more into the craziness of what's going on but for now here is my list.

1. "You don't look sick." Well you don't look stupid - yet here we are. No, you're right I'm lying about being sick and not working because it's fun
2. "Chemo doesn't work for cancer. The only thing that works is..." which is followed by ionized water or a vegan diet or something else their mothers sisters friend heard of once. Just stop and be quiet. 
3. "It must be nice to be able to sleep all day" Hows this. You get my cancer and then I get to work and not sleep all day. 
4. "I know just how you..." Just stop. No you don't know how I feel. Unless you have MS or Cancer or something similar you have no idea. Don't say it. 
5. I wont talk about anything else but your cancer every time I see you. Please, change the subject. We like talking about other things. 

Now I'm tired so I'm done with my list (smile). 

This Dragon is Bullshit

Here I am hanging out at the hospital (I'll explain that in a minute) and I've decided that the ride I'm on is bullshit. So, I've been sick lately for months actually, and I chalked it all up to MS. Fatigue, dizzy, nausea, and feeling weak are par for the course with MS and while this was much worse I just thought it was stress.

On June 2 I'm watching Game of Thrones just chillin out (I wont spoil it for people who have not seen it) and I felt like I had something in my throat so I coughed. Well look at that... blood. Now the week before I had taken aspirin for a fever and I'm pretty sensitive to aspirin so I though OK I got a bloody nose. A few minutes after that I happened again, huh. Still thinking it was a bloody nose I ignored it thinking it would go away. Then it happened a third time, this time I blew my nose to see if I could get blood to come out of my nose. No such luck. I freaked out and decided I was going to the ER.

Now, I almost didn't go to the ER I thought it was fine and that it was just the aspirin but something told me to go. I will spare you the long story of the ER and getting moved to a second hospital but after running blood tests I had a platelet count of 10 and a White Blood Count of 1.1. I was transferred to MD Anderson with suspected aplastic anemia.

I get to this new hospital and I don't have aplastic anemia. I have Leukemia. Yep, I said it Leukemia.

This is a bunch of bullshit. Yes I said it bullshit! How the fuck did THAT happen? I'm on this crazy ride of life but this ride is starting to piss me off. I know worse things can happen and I know life isn't supposed to be easy but holy shit.

I've been in the hospital since June 2nd and I'll be here for a few more weeks. My numbers have to come up before they'll let me go home but on the positive side I have a "good" leukemia APML and it's very treatable. So, I'm doing my chemo like a good girl (did you know they use arsenic ) and sitting in my hospital bed.

I love my life but I would like to get off this particular ride.  How about a lazy river ride?  

Winter Garden Harvest Festival

I had a great time at the Winter Garden Harvest Festival this year! It was a little drizzly at first but I stuck it out and I'm so glad I did. I met some awesome people and a group of Central Florida Food bloggers.

The first person I met form this group was Katie Jasiewicz she is the blogger behind KatiesCucina.com. She welcomed me with open arms an was so friendly! Today was a national food bloggers bake sale (this was amazing to me), with all of the proceeds going to fight childhood hunger in the US. I was so excited that I bought yummy treats from everyone there. 

Here is a list of those I met! If I missed anyone I apologize in advance! 

Julie Tran Deily from thelittlekitchen.com

Wanda Lopez from mysweetzepol.com

Julia Montgomery Stewart from livepretty.com

Marilyn Torres from forkful.net

Robin Wilson from simplysouthernbaking.com

Suzanne from kokocooks.com  (who I'm sending a bulgogi recipe to!) 

All of these blogs are worth the read as well a a group of amazing ladies! 

My Dog is a Stalker

I have a very cute dog named Kobe.

This is Kobe (on the left) and his brother Ben (on the right).

They're both boxers and really great dogs. However, I notice lately that Kobe has become a stalker. Yes, a stalker. I saw some signs, where he would sit and stare at me but he was just sitting in the middle of the living room, out in the open, nothing odd about that. 

Then slowly I noticed that I'd be speaking to my mother or on the phone and he would be just around the corner of a doorway. I usually noticed this because I would trip over him. I noticed his doorway sneaking more because it became hiding just behind the corner or doorway and having one eye out to stare at me. As soon as he noticed me he'd either back up so I couldn't see him or run to me very puppy like. 

Now I notice that he does it a lot, behind doorways, the kitchen counter, the kitchen island, planter boxes beds, the sofa... The sofa is the weirdest one where you just see his eyes and the top of his head. Then when he sees you he slowly lowers his head. 

I'm not sure what he's looking at or why but I'm going to say it's some kind of silly dog game, and not a plan to take my life. 

Annette Funicello - I'm Gonna Have to ask People to Stop

This weeks mark the passing of Annette Funicello. She was a great entertainer and someone who suffered from Multiple Sclerosis. She was 70 when she passed and had been in a coma for years because of her MS before her passing. I feel sad for her family and wish them the best in this time of mourning. She will be missed by those who loved her movies, her days in the Mickey Mouse Club, and fans the world over. 

Now, here is what I need to say. People, please stop asking me about Funicello, I don't know any more then  you and while I appreciate that you want to talk to me for an hour about her, I don't. I would also ask that you don't start crying and saying you're sorry that this is going to be how I die. No one said that, you're being very dramatic, and you're creeping me out. I don't plan on going into a coma anytime soon and if it happens in the future I'd rather not spend the next 50 years thinking about it. 

To be honest I'm not even sure what type of MS Annette had and that makes a huge difference in what will happen to us as we age. MS is so different for everyone that it's impossible to say what will happen - just like life. Perhaps this death will bring the spotlight to MS - I don't believe it will - but if it does thank you Annette. Until then, we will keep waiting for a cure and living our lives, not obsessing on our death. 

Huston We Have Seedlings!

Well I planted some seeds into peat pots earlier this week. Here they are.

I ordered these seeds from Burpee online and I was a bit leery of doing so. If they didn't germinate what was I going to do? I didn't have to worry because today this is what I saw! 

These are Kale. They are also fuzzy. I had no idea Kale seedlings were fuzzy (laugh). OK  yes, I'm a dork don't judge! 

These are my regular radishes. It looks as if every seed I put in here germinated! I will be transferring them very soon into their own pots so they all have a good start. 

These guys are my Watermelon Radishes. They're heirloom seeds and I am very excited to see them growing! 

Overall and amazing start with these seeds! It only took four days to germinate these specific plants I am amazed and ecstatic. I want to see if tomorrow I have a surprise in the other pots (smile). 

MS Annoyances or ARGH MY ARM

My arm hurts and it's annoying me today. I know it's from a muscle spams and I'm doing some stretching exercises to work out the kinks. To be honest I do these stretches all the time. It helps keep my spasms at bay which keeps me out of pain. For those that didn't know, at the end of January I had a MS meltdown and my right arm was in so much pain I couldn't move it. It's better now but it still decides that it needs to remind me of the invisible knife it can stab into my rotator cuff.

This is a rotator cuff. My shoulder likes to stab my subscapularis (big word) as if it were a home invader. This pain radiates into my bicep and everything else in my upper arm/shoulder.



As you could probably guess this means my ability to do things like type, drive a car, and just to move is severely inhibited. My spasms seem to be pretty isolated to my shoulders and feet. To be honest, maybe I just notice them because my shoulders and feet are the places that hurt. Maybe I am just spasm ridden!

When my muscles bug my shoulders I just want someone to do this to me. It looks painful but honestly it's not. My Physical Therapist touched my shoulders once and goes "DO YOU FEEL THAT?" I said "Uh huh" it was a lump - I thought it was just my muscle well I was partially right. "That is a LUMP you're not supposed to have that!". My muscle was knotted up into a tight ball. Previously I muscle knots were just a term for a tight muscle but boy I was wrong!



So today I have made an appointment to see my massage therapist and I am going to keep on stretching. Such is the life of the MS person. At least I get massages out of it (smile).