Not well

I just don't know what to do with myself......
My tongue hurts. My back is so heavy, it hurts to walk. My vision is so blurry and my eyelid so heavy, I can't keep them open long. My thoughts are slow. I have periodic stabbing pain in my sides. My bowels still have a mind of their own. My face is still as large as the moon. I can't see my neck. Having the extra neck is weird. Can't look down. My glands in my neck ache. This goes up to my ears. Ears not in pain, just ache.
I want to do so much (really anything) and can't.

When I saw the doctor last Friday, he asked if I felt better...........I really don't. YET!

I just want the back bedroom cleaned out and organized.

Oh My Tongue!

Yesterday was my third Cytoxan infusion. Since I am sooo swollen (edematous) they only gave me half the bag of fluid. Got my antinausea bag (Zofran) and full bag of Cytoxan. I felt about 25% better after infusion. Shortness of breath was a little better. Thank you Maribeth for taking me again. I LOVE YOU! I also had the nurse I had the first time, Elise. She is so nice and informative. I will get a picture next time. We were a little late for my doctors appt. but got in without problem. Dr. Anderson changed a few things. Because my BP and pulse are up, my puffiness is out of control, my bowels have a mind of there own, I am slowing down..... He is slowly taking me off Prednisone. Should be off by next visit. I will be taking Lasix (water pill) every day. YeaH!!!!! BUT.............. now my tongue is hurting. It has hurt in the past, but went away. This woke me up. Not really a sore throat. I think more glandular because of edema. It's more the back of my tongue that is sore. If this continues, the weight should come off fast... LOL!  Also my blood work was ok. No big change. I was afraid it was off because I had some bruising.
On a good point, MB and I went to see Landon last night. Kendall was at her grandma's :(  We took Landon to see the lights at the Fairgrounds. He LOVED it. I LOVE him!
FYI- no Christmas tree up yet. Maybe Monday????

Every Day I'm Shuffling: Blah!

Every Day I'm Shuffling: Blah!: Not sure how I'm feeling the last couple of days. Last week was a big week. Xavier had his surgery and is doing Great! He has a cast on ...

Blah!

Not sure how I'm feeling the last couple of days. Last week was a big week. Xavier had his surgery and is doing Great! He has a cast on and had to have pins put in his thumb, but he is doing wonderful. Three more weeks and the cast is off. :) I was in C-bus for 4 days. Any other time it would have been a breeze. This time it was good, but it caught up with me...... DAMN!!!!! On Saturday I got to see my nephew Stephen I haven't seen in about 10 years!!!!!! What a nice visit we had. I hope we didn't overwhelm him too much! Thank you Paula and Brad for hosting all of us AGAIN!!! Hugs! I also got my hair cut short. The texture has changed, but it hasn't fallen out.(yet?)

I have my third infusion tomorrow. Not sure if I'm feeling yucky because it's time for next infusion or something else. Plus my body is aching MORE! Not fun. Thinking it might be the 20mg I decreased my Prednisone has caught up with me?? Back tightness (SOB), upper abdomen heaviness increase and lower back heaviness increased. Ambulation hurts. My moon face (head) is heavy and hard to hold up at times. Eye lids heavy. Still smell metal smell, bowels are crazy, BP and pulse going up and down. I've noticed some bruising (bld count?) Always tired.
REMEMBER - I am writing all this down to hopefully help someone else, not for pity. I have accepted all of this and will continue to accept whatever my doctor gives me to get better.

I have received food stamps and my cupboards are full. Thank you gma and Brad for paper products. I don't have to use t-shirts to wipe my behind!!! LOL! I saw another case worker on Tues.at Job and Family Services. She was wonderful and is going to try to expedite my case so I can get some cash to pay bills. It's up to the doctors in Columbus when they review my case. Please say a prayer! It could be two weeks or 6-12months before I get any money!!!!

AMEN :)