Wednesday, November 30, 2005

No Drama Zone!

My husband and I have been fighting a cold bug for almost 3 weeks. We are sick of being sick! He has kept very upbeat and I have not, because neither of us get sick. I have no energy, can't go to the gym and my kids are stressing me out. I feel like their personal dump trucks and I think it's boundary time! Dave gets out of the house sick or not and I think that helps him concentrate on other things. Calgon take me away!!!!

Michelle, my oldest (22), has decided to move to Tahoe. I'm happy she will finally be moving out of her dad's home. Major dysfunction there and she wants out...Waahoo! She has been offered a job and a place to stay and is very excited. I'm supporting her independence because her dad is an enabler. She tends to get fired for her mouth and without dad to bail her out, maybe she will learn a little self-control. She calls me more now, that she has made a big step toward independence. I let her know how proud of her I was but of course I had to open my big fat mouth and give a "do your research, safety lecture". When will I learn to stop at I'm so proud?

Jessy's mother in law is throwing a small family co-ed baby shower and Jess has decided since she was not given much notice to make a guest listwith some of her friends, she will not attend. Oh my gosh...I was horrified! This lady has given them free room and board (big mistake there) that Jess has no appreciation for. She is ignored in her own house by Jess over her close relationship with her son. She is afraid to upset Jess for fear of being shut out of the new baby's life. This poor lady calls me upset, I apologized for my daughter's behavior and said my husband and I will attend the shower. We will be Jessy's only family there because the rest of her family are 2 hours away. How awkward will this be? No mom to be at the baby shower? I let my daughter know how I felt about her behavior and we shall see if she shows up...way too much drama! I'm glad I turned my kids rooms into guest rooms the minute they coming back here!

I'm embarrassed to tell my husband about my kids and he is dumbfounded over some of their behavior. He wants me to be well and he supports me the best he can. His daughter has never given him much grief so he gets angry when my kids are hurtful. We need to be well so we can get on with the holidays. I'm declaring my home a "NO DRAMA ZONE".

Tuesday, November 29, 2005

Parenting is Tough

I have wanted children since I was old enough to play with baby dolls. I went so far as to marry young and give birth at 21. I think that is where it all went wrong. I married a drug user and all around degenerate (I was young and stupid at the time). I divorced him when the girls were very young and was given a 50/50 split custody(that was not my idea at all). I got ALS and had to force my kids to grow up before they were ready(it also put fear into their lives). These things helped in shaping my kids or did I fail them? I know I could not control certain things but maybe I could have delt with them better.

Michelle was affected the most. She was so afraid of me dying that she took on the role of caregiver, a role I sadly admit I allowed. She loved her dad but knew she could not count on him and was afraid to be around him at times. I was her anchor and we were so close you could not tell were I ended and she began. When she hit her teens I was seeing the anger start to rise up in my little girl. I picked up and moved the three of us to the country, against their father's wishes. It took time for my ex to be ok with it, but he was seeing Michelle's anger and knew a change might help. The girls liked the move but old hurts and hormones soon kicked in and I found myself in hell. Counseling, church and my rules did nothing to help Michelle not self-destruct. She was angry, aggressive and rebellious. My youngest was afraid of the anger and stayed in her room and I was scared of my own daughter. My ALS made it so difficult to deal with her, I had to send her to her father at 17.
When I met and married Dave (see 1st entry in Nov. archives) she was 19, so jealous and yet relieved I was well taken care of. She feels replaced and not loved by me because I don't agree with her choices like, drinking, saying the F word in every sentence, smoking, men and her money problems. I support good choices, offer no financial enablement(is that even a word?) and tell her I love her but it's never enough. She won't get to know Dave and she never asks about my life but calls often on every detail of her life(even the stuff I don't want to know). The relationship I once cherished is slipping away. I miss her!

Jessica, was robbed of being the baby by most of this stuff and it made her grow up afraid of everything. I had to push her into trying things in school, driving and getting part time work. She had few friends, hated school and loved TV on the couch. She was hard to get close to and was happy just listening to music in her room. When she got grounded it was not to her room it was to a family activity. Her sister treated her badly, so when Michelle would rage, jess would cry. When I moved Michelle out it really helped Jess relax but she was very moody. When she graduated she moved out into her boyfriend's parent's house because my rule was work or go to school. She got married in June and is having a baby in December. The father just turned 19 and works at a casino. Jess never got a job, stopped driving and is enjoying just being on the couch. Her in laws don't know how to deal with her moods and she has created quite a bit of tension. She visits me and we talk more now that the babys coming and she thinks Dave is the greatest. I just worry so much about her maturity to raise another human being. Her story resembles my own in ways that scare me. The cycle begins again!

Sunday, November 27, 2005

The Stiff Story

I will preface this funny little story by explaining how my body is affected by ALS in the cold.
I will stiffen from head to toe, I can’t speak but through my teeth, turn my head or bend. I can be in the cold I just need to be dressed for it. When this happens it’s because I am caught off guard and it can get quite painful, but I defrost very quickly with assistance. The few people who have witnessed "the stiffening" have been amazed and frightened, especially Dave. It is always in the back of his mind and he fusses over me if it’s cold and is always prepared if I should catch a chill . . . gotta love this guy!
In the beginning of my illness I was certainly not aware of all that ALS could do to my body but I had experienced the stiffening once before. I decided to meet a couple of gal pals for dinner and a movie one night when the kids were at their dads. It was late summer or early fall, I really can’t remember, except it was starting to cool off at night. I wore a cute new skirt and thought I’d bring a sweater for later in case it cooled off. We had a nice dinner at Olive Garden and then walked next door to see the latest chick flick. We were all red eyed and weepy when we left the theater to our cars back at the restaurant. I was feeling a chill, even with my sweater on probably due to the draft up the skirt. It was getting harder to walk, even with my trusty walker and I got really quite focused on the walk. The girls noticed I got quiet and was struggling but I was at my car already and quickly turned the heater on and sat down in the car. They relaxed and I acted like everything was normal so we hugged and said our goodbyes.
I was forty minutes away from home, I had to pee and it was after 10pm on a week night. Did I mention you have trouble holding your bladder with ALS? Ok, that too. I was on the freeway on a slight grade when my car started to die. I pulled over, did some swearing and assessed the situation. The car was dead, I had no cell phone and the nearest call box was too far to walk in the cold. I locked my doors and prayed a cop would come before a rapist did. I was nervous but not scared until I began to stiffen. I sat there for three hours when a cop car finally pulled up behind me and approached the car. I was so stiff I probably looked very odd in that car all stretched out like a piece of wood. The look on his face was priceless, as he tapped on the window, "Mam, you ok?" I could not turn my head but I was able to see him out of the corner of my eye and reach the door lock which allowed him to open it. "What’s wrong with you?’ he asked confused. I said, through my teeth"I need heat, a tow truck and to pee"by the third time I said it he got it and he motioned for his partner to come help. The partner came up as the other cop was trying to pry my body out of the car and he said "what’s wrong with her?" The cop said "go crank up the heat and help me get her in the back of our car" which he did but getting it done was hysterical! They bumped my head twice and took off my shoes to help, but their chatter had me laughing so hard I almost peed during the extraction. This was a first for them and they could not understand me so there we all were on the freeway. Two cops carrying this stiff as a board woman to their car, you can only imagine what this must have looked like to passing cars?
I was able to defrost in seconds and my first coherent words were "I have to pee." I explained what was happening. They called me a tow truck and were very relieved I was okay. I thanked them and gave them a big hug for saving me. I drove off in the tow truck very grateful indeed!

Patrick's Episode #85

1. Have you ever had a dream that you felt was a message from some "higher power?" Yes, it saved my life and rocked my world!

Do you think it's possible to receive such messages through dreams? Yes, I have only received two in my life and they were very different from any other dream.

2. How much does a person's musical preference tell you about them? I'm not sure because I really enjoy all music and so does hubby. I really don't like rap and my hubby's old Burl Ive's records.

3. What time did you get up Friday morning? 7:00am

Were you part of the shopping madness? Not for all the tea in China! Can you see me and my walker in those crowds? lol

4. Take this quiz: What religion do you fit in with? 80% Spiritualism/40%reason-oriented.

5. Is the answer you received the religion you feel you really do fit in with? Yes

6. READER'S CHOICE QUESTION #77 from Globetrotter2: Do you have any special nicknames for your significant other when you're annoyed or irritated with them? If so, give us a few of them (NO PROFANITY, please). Goomba or dork.

Saturday, November 26, 2005

Christmas Parade

I made it to the Christmas parade...Waahoo! The rain stopped an hour before it started. I was so bummed because that morning we still had our colds, it was raining and I had a migraine. I decided nothing would stop us and so the preparation began. I took an Imitrex, Dave made a thermos of hot coffee with pumpkin spice cream and we then began the fine art of dressing Tammy.

Dave obviously has not dressed many barbies or his daughter for that matter because it is a heck of an ordeal to dress me. The butt seam in any bottom garment ends up far from my God given seams, he pulls them up so high I get the wedgie from hell, zippers piss him off, jewelry clasps are too tiny and he can't see the earring hole, so he pokes tell he hits it...Ouch. The bra should be easy for men but I discovered that is only when removing. My boobies end up hanging out the bottom while the underwire cuts them in half...Ouch! The shirt usually messes hair and smears make up so I learned to do them last. Bless his soul for trying and he is improving a lot. I was really warm and very layered.

We got a great spot, walked up the street to the ornament shop and I did not crash into but one display with my walker. We got an ornament for our new home, two bumps on a log and a new grandma one for me. We ate huge steak burritos on a bench, visited with friends and drank hot coffee while watching the parade...perfect night. HoHoHo, I'm feeling the spirit!

We have our lights up, including bucky the deer and are on our way to see "Walk The Line" at the movies. Dave and I are still feeling crappy but we are sick of missing out on our traditions. I guess we have to go to the doctor, bummer. I'll have to share my "stiff" story later. Hope everyone had a safe and fun holiday!

Thursday, November 24, 2005

Cancel Thanksgiving?

I was sleeping when I suddenly realized I felt cold stale air on my face. Did Dave turn the fan on? Shoot, I have to open my eyes and get up and turn it off, even worse I feel the need to pee. I opened my heavy eye lids slowly and found myself not five inches from my husband’s face. He was zonked out, but now I knew where the breeze was coming from, his mouth. His poor little nose was completely stuffed, and so began the start of a three-week game of "passing the cold." We actually both had a cold for three weeks it was just on/off, on/off. Having ALS and a cold presents certain challenges, muscles like the bladder and lungs refuse to operate normally. Everything is a darn muscle so when you get sick your body is weaker than normal and my normal is not so normal.

Why is it when people have colds you find used tissues in the oddest places, in your bed, inside your jammies and stuck to the dog? You wake up with your tongue stuck to the roof of your mouth and you are knotted up in the covers because you spent the night being hot then cold, cold then hot. When we eat, we look like wine tasters, but we are just trying to get some taste.
We waited until Thanksgiving morning before we called the family and said we had to stay home and keep our snot rags and germs to ourselves. I’m sure the babies and Dave’s 82 year old mom appreciated the gesture. We really thought we would feel better by now, so no turkey and fixings today. Dave did go to the store and bought some goodies for us so we can have a little celebration. We have so much to be thankful for that we will make it special. I tried to kiss Dave in appreciation but being that we needed our mouths to breathe it was a quickie. LOL

Our Christmas season starts Friday night with a small town parade. No early Friday morning shopping in this house, not even on our best day. We go to the parade early to get the perfect spot and buy a special ornament at a year round Christmas shop on the parade route. We then get a mocha, a hot dog and sit on the tailgate of our explorer to wait for the parade. This year we are bringing my little dog Nikki sporting her new winter sweater with a hood. I hope we are up to it, this always gets us in the Christmas mood. The ALS can reek havoc on my body if I get cold. My body stiffens from head to foot, I can’t talk and there is pain. If you pick me up, I don’t bend, Tammy the two-by-four. So I hope it does not rain on my five layers of clothes at the parade, because Dave will need a fork lift to get me in the car. LOL The rest of the weekend is spent putting up lights, eating leftovers :( and going to the movies...Yahoo!

I will take pictures and will tell a funny story about my getting stiff on Saturday in my journal. It’s a hoot!

Tuesday, November 22, 2005

I'm Thankful for...

I have been reading "One girls head noise" by Pam in AOL, UK journals and was truly inspired by her. She is taking me on a journey that is very scary yet beautiful in the way she looks at her journey and writes about it. I feeling especially thankful this year and after reading about Pam, I feel this is a perfect time to share what I am thankful for.

I am thankful for ALS, it took this two by four to change my life for the better. I got to raise my girls, find a power stronger than
myself, appreciate life, the gift of compassion and an abundance of love.

I am thankful for Dave, who loves me endlessly, learned to cook, does the laundry without complaints and has bought us a retirement home in the mountains near a lake. I retired 11 years ago and he retires at 50 in 21 months...WaaHoo. I love you!

I am thankful for my children, minus the hormones and mood swings. They are healthy and are struggling but becoming the women they were meant to be. Love you my babies!

I am thankful to get to see my 1st grandchild on December 28th. I never thought I'd get this gift but I'm still going to spoil it rotten. Pay back time! Sorry...My bad...LOL

I am thankful to my friends who have become the family I never had. They taught me how to "receive love" and to ask for help because it's a gift for them as much as it is for me. I love you guys!

I am thankful for my new blog where I can share my thoughts, always have a good read, find inspiration and be productive. I am thankful for Pam!

I am thankful the most for God, you never left my side, you took away my fears and you rewarded me beyond my imagination. Forever yours!


Monday, November 21, 2005

Patrick's Sunday Seven

THIS WEEK'S QUESTION:Name the top seven stores where you are most likely to do the majority of your Christmas shopping this year. If you can't name seven, name as many up to seven as you can. When you live in the stix you shop simple and use the computer!

Old Navy
The Swiss Colony

Thanksgiving Five

1. What is the one thing on your Thanksgiving table that you will NOT eat? Stuffing or gravy with giblets and other reachable organs! Ewwwwwwwwwwwwww

2. Did you ever play in a pile of leaves as a kid? If so do you have picture of you or someone know playing in the fall leaves? Post it if you do! I did not have leaves as a kid because my dad was very anal with the rake...Sorry dad, you were!

3. When you think of Fall what are the three things that come to mind? Beautiful colors, messy yard...A tad anal and Yuck, I need to start Christmas shopping.

4. When was the last time you had pumpkin pie? Was it last year or have you already had some this year? Last year, not my favorite. I like Pecan, Yummy!

5. Tell us something really nice about the last person you read an email from. My last email was from Judi at talkingtomyself/ and she has been my mentor into the blogging community. Super gal and my first reader!

Saturday, November 19, 2005

God Dog

The little one is Nikki and the bigger one is Manny. I love all animals but these two are my very special love bugs. Nikki is just what you would imagine, spoiled, selfish and ferocious with other dogs large or small. In other words a cute pain in my butt! Manny, well he's very special and at 16 still doing great!
Manny was given to me at 5 years old by a friend. He was trained in every way until I loved and spoiled him right out of training mode. It was after I retired and found myself home alone quite a bit. My friend thought I could use a dog friend and protector. Little did I know what this dog would do for me, he protected the house, he stayed by my side at all times and even shared my bed. The amazing part is what he did on his own. I heard dogs can sense illness but until Manny came into my life I thought that was exaggerated. If I was walking badly he would pace and whine, when I fell he would get someone or lay next to me and if I had trouble getting up he would stiffen his neck so I could use him to pull up. He trained himself to take care of me and the rest of us. He was not a happy camper when we brought home "lil white bxxxx" but he learned to be tolerant. I live in the country so when one night a huge racoon went to attack nikki, manny jump in and kicked butt. That was a relief but Nikki has refused to pee at night by herself ever since. Guess who escorts her, waits for her to pee and makes her come in so he can go to bed? Manny. He had a "old dog vestibular" stroke thing but now is fine, hearing is bad, eyes have cataracts and he rises a little slower these days. Manny is a gift from God and I can't imagine life without him. I love him.

Adventures at the Gym

I'll start by saying that up until three years ago I was never caught dead in a gym. I've lost weight in my healthy past by starving or weird diets but god forbid, never the gym. I actually believed the doctors when they said all your muscles will die and you can not build them back. When I realized I was going to live longer than they thought, I decided they were clueless. I had a bargain with God that if he let me see my kids graduate High School I would give my life to him. We both kept up our parts and so I figured God had more in mind for my life. My muscles were dying mostly in my hands and arms so I decided to try and stay ahead of the illness and work my body.

Gyms are not disabled friendly except for the four blue parking spots, which are always full. I started in the pool with a stretch class for people with a hitch in their get along. They were all over 65 and me being 44 I was never self- conscious in my suit...LOL I moved on to water aerobics and tried not to drown. You see with ALS you have bad balance but in the water holding onto buoys I could really move...Great feeling! I will stiffen if chilled, I mean unable to move stiffen so when fall began to chill the air I stepped in to where I've never gone before...The gym!

The people who were working out saw me coming, walker in tow and gave me overly large smiles that said "she's going to work on these machines?" The managers on the other hand watched me out of the corner of their eyes thinking "lawsuit". I work out on average 1-1/2hrs, three days/week and (knock on wood) I have not had one gym fall. I'm also building some muscles, take that doc!

I am thoroughly entertained by the people, the grunting men working biceps to stay ahead of beer bellies, the guys that look at themselves in the mirror the whole time and the bored retired men that sit and chat but never seem to lift a thing. I love it and I feel like a workout warrior.

Friday, November 18, 2005

The Holidays

I've never been big on holidays, at least the commercial side. When I was young Thanksgiving and Christmas were great, all the presents, good food and decorations. We were a small lot, just the four of us and grandparents, if mom was not mad at them that year. What was missing? A sense of family. Mom had to keep up with the "Jones" so we had way too many gifts, and no outward signs of love and affection. It was all show no go all year around.

When I married into a huge family, at 21, I thought wow I'm finally going to get real holidays with a loving family. Well I learned a huge family is not necessarily a loving family but it was a fun time. When I divorced I could not imagine splitting up holidays with my ex or making them choose between parents. It made perfect sense to give the holidays to the ex because he had the family. I think I made a mistake on that decision because I could have made more of an effort to make a fun holiday for three. I spent holidays at other people's families houses and that made me sad and other times I'd stay home which was easier.

Now the kids have their own little families and I have Dave. We love to decorate or rather Dave decorates, I supervise! We both exchange gifts which is really neat after years of being single. Cooking is a problem though because I can't and he won't. We usually travel and visit his family, that he sees maybe twice a year.

I think it's old bad feelings that make me cringe at holiday commercials, the stores decorating way too early, getting gifts from people you did not buy for and figuring out how much to spend on who. Ok, I admit it, I don't like holidays! There I've said it! I've actually never said that out loud, it's very freeing. Maybe we can donate all the money we would have spent on gifts to charity, decorate and help feed the homeless. I tried that one year and I loved it but my kids were ticked! Oh well, I'll think of something this year.

Thursday, November 17, 2005

Tivo is a Hero

So what’s a retired gal to do all day while hubby is hard at work? Glad you asked, not much! My poor hubby commutes 4 hours a day and works a stress filled job and yet when he comes home and says "what did you do today?" I smile and say "not much" thinking I hate that question:(
My balance is bad so I use a walker, can’t clean, don’t drive alone (except to the gym) and no longer can prepare a meal (I have a severe case of dropitis). I can however straighten up, make the bed, get coffee (pre-made by hubby), use the computer and watch TIVO. I love Tivo, my life is so much more exciting. Don’t laugh! It helps fill part of my day and keeps me away from the dreaded daytime tv. I read too but I go through a good book so fast I need a break for my eyes. I love movies the most but save those for my weekend movie night with hubby. We get three movies/wk from plus we still go to the theater once a month. Ask me about most movies, I’ve seen them...sad but true.
Dave is home by 5:30pm and up at 3:00am so off to bed at 7 and we are sleeping by 8. I Tivo prime time and watch it the next day, of course I save one for Dave at night before we fall asleep. Dave loves it too because he can catch a good show when he wants to and not be rushed. The best part of Tivo is NO commercials...Yippee!
Our favorites are: House, Prison Break, Nip/Tuck, Rescue Me, Survivor and ER.
My chick shows are: Gilmore Girls, Commander in Chief, OC, Punk’d, Ghost Whisperer and Related.
I keep working on my hands at the gym but my thumbs are almost obsolete but my Tivo finger is hanging in there. I’m through feeling guilty, I am out of options but very blessed to still have options. I hope when I can no longer use my hands or speak, Tivo will still be one of my heros.

Wednesday, November 16, 2005

Starting New

I'm embarking on my second half of life. My girls have "left the ole homestead" thank you God! If two hormonal girls can't kill me, ALS don't stand a chance. While my nest was emptying I was wondering why am I still here? I was thrilled just to see them graduate from high school. When I was 29 they gave me 3-5yrs to live with no cures in sight. They underestimated my determination, not to mention I had to girls to raise. We made it just fine!

I decided after 13yrs of being single and still getting along on my own I would start using the internet to chat with friends, then strangers and most frightening internet dating. I wanted a male friendship because with ALS anything more would be selfish...right? I'm so glad I was wrong! Most stopped IMing at the word "disabled" I never got to the dying part...LOL. Then I met Dave, a romantic guy scared to death to start dating after...get this...13yrs. We IMed, talked on the phone and finally met. I was so scared I asked if he owned a chainsaw, then I worried about the walker. I took care of that! I dressed way too sexy for a first date so his focus would be off the disabled stuff. He researched my illness after that romantic first date at and we fell in love anyway. We married on February 14, 2004 on Bali Hai, Kauai. It was just us, a minister, native hawaiian singer and my best friend. We got married at sunset and received an unexpected blessing of a double rainbow.

I'm so excited to start my second half and now I have my knight to fight by my side.