Friday, October 31, 2008

What it isn't

It is not nothing. That we now know for sure. What it is, we don't know. We get to keep an eye on it, and if it does nothing or changes, "it warrants further investigation".

We do know there aren't any blood vessels going to it, so it isn't feeding. That usually means it isn't cancer. That is good. We just don't know exactly what it is.

So yay!!!!???

Thursday, October 30, 2008


i am sitting here watching the clock. i have an appointment in 2 hours with the doctor to discuss the results of my mammogram and ultrasound. 2 hours to wait and worry. 2 hours to get a shower, get dressed, and then leave for the doctor's to hear if everything is normal, i have a cyst, calcium deposit, or growth that needs to be biopsied. 2 hours. Not enough time to hide under the covers. Not enough energy to go and get groceries. Too much time to think and think and think.

Think about the what ifs. Think about how i feel. Think about how i will react. Think about what will happen next. Think about how the MIT will feel. Think about how my parents will feel. Think about how my friends will feel.

i also lost 2 friends this past week. Not because of death, but because of how i handled my fear. They got mad about how i reacted to the fear i was feeling. They got mad about how others were being made to feel, without talking to them. They decided things about me. i have decided things about them. i have decided that they have rules that they expect others to live by, but not live that way themselves. i have decided i don't need to work so hard to keep friends. Those that truly care about me, and are friends of mine, understand me, and let me live how i please, knowing that i don't break their confidences, or purposely act to hurt them. Those that truly are my friends, know me, help me, and are there for me, just as i know them, help them, and are there for them. i am sad i am loosing people i thought cared for me so much, but am less stressed, knowing i don't have to live up to expectations they don't even hold up themselves.

What saddens me most about the situation is the MIT. He is mad. He misses them. He misses A. He says that they acted like Him. Mad about something and not able to let it go or talk about it. He talked about how they "lied" about forgiving me before. He talked about how He did that with Mr. B. at karate. He understands that they don't hate Him, and aren't mad at Him, but He knows the friendship has changed, and it does affect how often they will and how willing they will be to see Him, with them being mad at me. i like how "grown-up" He is getting.

He knows what is happening with me. He knows about the appointment and we have talked about what we are hoping the doctor will say. He is scared i will die, like others in my Mom's family, or like others from His church. He is scared how things will change if it isn't nothing or isn't a cyst.

i made Him come with me to see D and E and P. He likes that D is like Him. He likes that someone else He knows forgets words, slurs, or is shaky. He feels like He isn't alone so much in what He experiences. He understands how serious D's condition is, but He feels connected to her. He says D will be waiting to greet Him when He dies, along with Papa. He thinks D and Papa will be friends in heaven. He likes that idea. He liked that everyone was bald. He doesn't want me to go bald.

The MIT is having more seizures. He seized at school yesterday. He fell 5 times in a 1 1/2 hour period on Tuesday. He forgets more and more words. This morning He was so pale when He woke up. His condition is getting more and more unstable. Both with the way His balance is, and with His health. More seizures is a bad thing. More falling is a bad thing. i keep looking forward and i see Him spending more and more and more time in His wheelchair. He already is. He doesn't spend an entire day out of it, or without loosing muscle tone. Sure we don't use it much here at home, but even here He spends more and more time without a side working. It is a daily norm now.

Wow, i have now spent an entire 1/2 hour writing. That means only 1 hour before i leave to see the doctor. That means i have 1 1/2 hours before i see the doctor. That means 1 1/2 hours before i find out what the lump is.

Saturday, October 18, 2008

My week in hell

So, this week has been rough. It actually started 3 weeks ago. That is when i felt a lump.

Monday - wasn't so bad a day.

Tuesday - the MIT came home really angry. So angry, he was starting to hurt Himself. i ended up giving Him an ativan. Man that made Him dopey and wobbly. At least He calmed down and didn't hurt either of us. i made the decision to not let Him go to karate because of it.

Wednesday - the MIT was full blown at school, seized, and came home the way he left school. He came home, i carried Him to the couch and he ended up sleeping for 2 hours. Even after that, He was dopey, and couldn't remember words or names or other stuff.

Thursday - all was well, until i got home from E's place. The visit there was nice. i got to see D. She had a problem remembering my name, but it came to her eventually. She is going downhill fast. It is hard to watch. E is feeling the strain of it being such a drawn out process. i know exactly how she feels. When i did get home, i smelled something burning. It was my computer.

Friday - computer still wasn't working. Had my Dad come over, and we determined it was the power supply. He went to get the replacement, and i went to my doctor's appointment. My blood pressure was low, my weight was down, and my cholesterol is up. i told her about the lump i had found. She felt it also. She is sending me for an ultrasound and a mammogram. When i got home, Dad greeted me at the door. i could smell something burning again. That was when i was greeted with this.....and then to this...... Yes both pictures are of the damage my flaming motherboard created. i had no more motherboard. Dad had to go out and buy me a tower, with a new motherboard and duo processor. Of course that couldn't be picked up until Saturday.
Saturday - today. Today was spent with my Dad putting in to my new tower, my drives and other neat stuff, trying to coordinate my hard drive with the new motherboard, and hoping to the God and Goddess that nothing got erased from my hard drive. i am now up and working. It took me until 10 minutes ago. At least i am back online.
Now time for bed.

Thursday, October 16, 2008

Dear Sir

It would have been 9 years Master. 9 years since You and i met on October 13th. i have cried for the last 2 nights. Still grieving over You . Still wishing You were here. Still wishing things were different. Still wishing You had kept Your promise that last night to never leave me again. Ever anniversary, i get lost in You.

You would be very proud and worried about the MIT. You have missed a lot. He is growing into a more mature boy. He is speaking up for Himself more at school. He is learning to do more things. He is taking more chances. He is still very obsessive, but sometimes in a good way. He is even telling me when He has homework and wants to do it with me, not have me do it for Him. His physical issues are getting worse. He can no longer stand still for any amount of time before loosing His balance. He falls more than He stands or walks. He is loosing sides more and more. He is having more full blown days. He has seizures now. Heck, He is on meds now. We are having to play with His meds to make the seizures less, but it doesn't seem to be working.

When You were around Master, i would have looked to You for comfort. i would have looked to you for reassurance about how He was doing, or if i am doing it right, or if i am worrying too much. i don't have that now. i doubt myself a lot. i doubt whether i can leave Him with the nurse. i doubt if giving Him these meds are actually helping verse hurting. i doubt whether any of His falls are worse than they look, or if i am panicking at some of them. It sucks not having You here to help make calls on that.

Yes, today i am feeling lost. i am lost in my head and in my feelings. i am lost in remembering both the good times and the bad. i still blame You for leaving me, even if it was in death. It still feels like You abandoned me and the MIT. i am still lost in all the lies You told, and the position You put me in after You died. i still wonder why You never followed through with anything You said would happen. From writing a will, to giving proper instructions. i am still very angry about that. The lies keep coming back to me. Lies about You playing in public when You said You wouldn't. Lies about what You had told other people. Heck, i recently found out that even though You told me i was no slave, and couldn't be a slave, that You told others i was Your slave. i also still hold a grudge about how far Your personal growth took You, and how i backed You up in it, but You held me back and wouldn't even try some of the stuff that i wanted to explore.

i have done some personal growth since You died. i am cooking now, and finding my feet in trying new recipes. i have taken the MIT and Dad camping twice now. We are planning a third trip in Nov. i am back to going to the diabetic clinic, and i have made a few commitments in regards to that. i am eating yogurt at every meal. i am getting my blood work done every 3 months. i am eating lunch 3-4 times a week. i am checking my blood sugars about 2 times a day. That one is really hard for me, but i am trying. i am going out more. Well, when i can afford it. i am even seeing someone pretty regularly. He is nice, and kind, and very new. The situation is more open than it was with You and B. Heck, his wife likes me coming over and spending time with them both. Still, it just isn't the same.

i miss the intensity You and i had. The way our energies seemed to mesh. The way we played and i could feel You with every stroke. Gods i could use that again. You hooking me up in the basement. All our hard toys hitting my skin. me taking all Your energy and loving it. You teasing me and hurting me. my head lost in the pain and in You. Your marks on my skin from the cane or the Kiss. You cutting into my skin, and then lighting it up. i miss that so much. i so need that. He and i don't play that way. He isn't ready for it.

Yes, i am lost in my feelings today. i have been for the last few days. i have even sprayed Your pillow again. i am running out of Your cologne. Your smell relaxes me, and calms me. It is the closest thing to having You here with me, in bed.

9 years ago i met You, and You changed my life. i love You.

Saturday, October 11, 2008

A week in review

Last weekend went great. We had a great time going camping. Sure it was chilly, but we had the heater and a nice fire to keep us warm. Add the bonus of a nice sunny Sunday and a slightly sunny Saturday, and we had a great time. MIT tried fishing again. He got bored again. We did get to see gaggles of Canadian Geese fly in and land on the lake. Now there is a sound that is undescribable. Even Dad enjoyed that part. There was no rain. It was great. The only problem was after we had packed up and were ready to go. The Beast (van) didn't start and we had to wait for CAA to save us. Oh, and yes we are going again in November. i know some people will think we are crazy, but we are all enjoying the quiet, the undivided attention of each other, and the learning how to survive in that kind of weather. i can actually see us possibly doing this every month (well, we will see). i know that next year we will be doing more camping. It is just fun.

After getting back from Camping, i found out my friends got together and did a head shaving. God i was hurt. No one talked to me about it. i could have done it while camping and had Dad and the MIT help me. It would have added something to the weekend. It isn't just that though. i am the kind of person that will sit back and wait for someone to ask for help. i put out the offer, and then let them come to me. i don't want to be over crowded when i am going through a crisis, so i try not to do that to others. They haven't really called. On top of that, i haven't heard from L&D since camp or since the announcement about D. i have left messages, but heard nothing. i probubly insulted them again, but they aren't telling me. Same as last year i take it.

News about D is not good. D isn't getting any better. She is getting worse. She isn't strong enough for chemo. It is a wait and see now.

News about the MIT isn't good. He is seizing more and more. He seized at least 4 times on the camping weekend. We have upped His meds. He doesn't know. He doesn't need to know. He is convinced He doesn't have seizures, because i have said all these years that His AHC wasn't seizures. He isn't ready to know He is getting worse. The school has noticed. They have seen Him using His chair more and more. The thing i see every day, is my child dying. The more seizures, the more chance of stuff going wrong, and the prognosis at this point is more seizures until He dies. This sucks

Other than that, this week has been quiet. Nothing really happening here at home. i have been taking care of the house. i have been doing dishes. i have been doing laundry. i have been taking my meds. i have been watching my blood sugars lower. That feels good. i have been vacuuming and stuff. The house actually feels tidy and clean. i have been heating the house with candles again.

The only exciting thing was that M and La and baby girl came over Tuesday night. It was nice having them all here. Today i am going to their place for some quiet and alone time with M. Plus, tomorrow i don't have to come home early, so will get to spend some time at the hobby shop watching, and maybe participating in a few Magic games.

OK, time for a shower and to get dressed and to finish packing up my stuff for the treck out.

Friday, October 03, 2008

From Last time (Sept 5-7)

Here are some photos from the last camping trip.....

Baba and MIT around the fire

Our camping site

Baba and the MIT eating hotdogs

Baba and MIT fishing (first time)

3 friends camping

Eating Breakfast

Me camping

Another Camping this weather????

Yes it is another camping weekend. One for the MIT again. One we planned a few weeks ago. All because i created a camping monster back in September. Really. i am looking forward to it. Even knowing, now, that the weather is going to be so damned cold. Even after this happened......

Yes, that is hail. It hailed yesterday. Today it is supposed to rain for a bit. Today it is only supposed to get up to 11C. Tonight it is to be a balmy 7C. Yes we have a heater. Yes it is packed. Yes i actually packed the extension cord. Yes we should have some heat during our little experience. Dad is bringing the money for firewood. We are going to use a lot. This time i have even packed myself a mug so i can have tea and hot chocolate while the boys have coffee. And, i am packing lots and lots and lots of blankets and fuzzy socks just for me.

Meals are going to be easy. Tonight is hamburger and hotdogs. Saturday is eggs, bacon, sausages, then salmon and tuna sandwiches, then hamburgers and hotdogs. Sunday is pancakes. i have a feeling i will want something warmer. i am thinking of packing the dutch oven and making stew or something for Saturday dinner for me. Something warm i can wrap my hands around. Then again, i could just bring what is frozen in my freezer from the last time i made stew.

It is funny how excited the MIT is about this. i think it is the undevided, non-electronic distraction idea of it all. If i could figure out a way to get Dad to go camping in November, i wouldn't mind going next month. Then again, i would also get to complain about how cold it is, and will have to master dutch oven cooking.

Last weekend was hell. MIT had a 3 hour seizure. We didn't take Him to hospital. Instead my Mom looked after Him while i went to a Magic tournament with M. i just couldn't let Thelma look after Him. She has no idea of all the different types of seizures there are, and wouldn't know what to do with Him. So in comes Mom and Dad to the rescure, so i could have some i looked after baby girl the entire time and it was nice. i like relating to a 2 year old when i am stressed out. That is all we did. We played inside the Beast. We had lunch together, and we waited for her father. After that, we headed back to Welland. It was nice there too.

When the MIT came home, He seems just fine. Mom did say that He was lathargic after the seizures were over, for almost 5 hours.

This week i was a good girl. i had my blood work done. i hate getting blood work done. i am waiting on the results. i have to call the diabetic clinic so i have enough meds to last me until the section 8 comes through. The government takes so long.

Not being able to see M this weekend is killing me. i am actually really missing Him. Yes i saw Him last weekend, along with baby girl, and then later with La, but still, i miss Him. i miss Him here, alone with me. We won't be getting that time together next weekend. Next weekend is going to the Niagara party. Well maybe. We talked about it last night, and it might work out that we get alone time that night. i miss alone time.

He wants to get me comfortable about sitting on His lap without freaking out. Yes He is a big boy, but still, i don't like it. i feel like i will crush Him. Like i will hurt His leg. Like i will kill Him or something. Logically, i know it won't be that way. Hell, He can lift me up. There is just something i can't wrap my head around. He wants to work on it with me, because He wants to cuddle like that, especially at His place, where there isn't a couch. We will figure it out.

As of right now, i am going to head off to bed, so i can be lively around noon, head off to get gas and smokes, then be ready for Dad to be here and pack up the van. Then, once the MIT gets home, we are off to camping.

Wish us luck and hope, for my sake, i actually bring enough stuff to keep us warm.