Monday, November 28, 2011

A New Venture

My son moved to Texas. His girlfriend is from there. They are talking of getting married...

I realized she will want to have the wedding near her family and friends. That's right. That's the way it should be. When I realized it a terrible pang shot through my heart like a ragged splinter through the heel of your hand. Housebound. How can I go? I can't survive restaurants, public restrooms, or hotels. I can't fly. Too much fragrance, cleaning chemicals and pesticide. To not be able to attend my son's wedding would kill me... That's what started this new venture.

I knew that if I was going to get to go, I'd have to take my safe zone with me. I needed a motorhome. If I could find a clean, used motor home, and modify it for my needs, I could go. I have at least until May. My son won't have vacation until then. Originally, they were planning for next October, but I don't think they want to wait that long. So, I'm beginning my search now!

I started looking this weekend and found one locally. The wife was TI so she no longer uses fragrance. It was just very weathered on the outside, but fairly nice on the inside. It could be made to work. There were several things I think it needs, that this one didn't have. I'm going to keep looking.

My criteria have morphed a bit since I started. I began looking a B class. Small, handlable. It would have everything I needed, almost. It wouldn't have a full shower, or washer/dryer. If I'm going to use it past this event, it needed to be bigger. So I looked at Jayco C class. Jayco has made a lot of non-toxic components and works at keeping VOC levels down. Their C class don't come with washer dryer hook ups, either. So I started looking at A class. Wow, are they big. I don't think I'll be comfortable driving one. I want to be independent, and that looks like it could be intimidating on bad days... But I looked at them anyway; they are so luxurious!

Today I found out that if something goes wrong with the engine, on a class A, they open up the hatch between the front seats and work on it inside the motorhome space. That won't work. I would be unable to access it for 2-3 months. So I am back to C class. C class are constructed on a truck cab and the engine is "under the hood." that will work better for me. I decided that if I looked at 90s vintage they should be outgassed.

The other things I need, convection/microwave. I can't do propane or gas, cooking or heat. A solar charger and inverter. The onan generators aren't going to be an option for me either. Then there's that washer/dryer... I won't be able to access laundromats; too much residual fragranced laundry products. I couldn't wear my clothes if I used a laundromat. I also need it to have been non-smoking, non-pesticided pets and non-fragranced. That may seem like an impossible wish list, but I'm encouraged...

I surfed Craig's list and found 3 different dealers that were either TI, themselves, had a family member who was or their detailer was TI. They use only non-toxics, to clean the vehicles. They are all in different parts of the region, so they will all be keeping a look out for me. :-) This could work!

Thursday, November 24, 2011


It's time to forget about the pie I spent all of yesterday putting together (limited energy) and then spilled half of it (myoclonic jerk) on to the bottom of the oven, the oven door and the floor; to stop worrying about the logistics of turkey and stuffings and 'sides' and focus on what I'm thankful for.

I'm thankful for my family: for Ron, my husband who supports me and provides for me despite the fact that I am no longer, even remotely like the girl he married. That he's taken on all the incumbent (extremely inconvenient and sometimes incomprehensible) difficulties and barriers that accompany this disability, and hasn't bailed... A real treasure in this day and age. Who's been there beside me countless times as I've fought through heart attacks, strokes, seizures and fits and respected my wishes not to call 911 or take me to the hospital, despite his fear that I was dying(as their toxins would kill me). That takes a lot of selfless courage; for my daughter and son-in-law who came to live with us, so we can spend some time together and make some memories before I die, and to relieve a part of the burden on my husband; for my son who knows and understands every bit of my condition, from heart to science and who supports me, no matter what; and for his intended, who brings him joy; For my sister Lib, and my Fearless Leader/'mom', Peggy, who are ALWAYS there for me and let me vent, rant or cry as often as I need to. Who always agree with me, no matter how naughty I'm being }:-0 but after the storm, talk some sense into me; for close internet friends I've made, like Victoria and Shawna, as well as all my other internet friends and acquaintances who make up my social life, and voices out of the dark who needed my help and gave me a reason to keep on living. 

I'm grateful for a day , or a moment where the pain ebbs, or for fresh air so I can spend a few minutes outside, in the sun, with out getting hurt. For the smell of sheep and horses, for the kiss of llamas... For the simple joy of walking on grass and smelling the earth.

I'm thankful for the most amazing dog I've ever known. Rosie, my service dog. Who helps me in so many incredible ways, besides the unending love and constant companionship... And Jessie, my son's dog for giving me the idea.

And most of all, for God, who has never left me or forsaken me through all of my life, and who is my light and my hope.

Wednesday, November 23, 2011

The Amazing Rosie!

I wanted to share a story I posted to my FB page on Nov. 13th about my incredible service dog Rosie.

"Yesterday was a hard day. I started having exposure reactions to something in the house, at about 4:30 a.m. It went on all day. I hung on through endless waves of chest pain, back pain, arm pit pain, neck & jaw pain as well as arhythmia's. My stomach was bloated and inflamed, I was throwing up my stomach lining and it felt like it was trying to turn itself inside out and crawl backup my esophagus. I had a pituitary head ache, weakness and further blindness in my right eye. It finally subsided by about 6:30 p.m.

At that time, I drug my sorry, exhausted ass upstairs. It was then I remembered I was going to change the cool summer sheets for the cozy flannel ones... I didn't have the strength. BUT Rosie did! I have taught Rosie to pull off sox, leg warmers and pants. This is a tremendous help when I get so bloated and swollen that I can't bend or pull.

When I was trying to pull the sheet out of the drawer, she came over to help. Together, we got it out of the drawer. Then she drug it over to the bed. She put it up on the bed on command and I was able to spread it out and put it on. We went back for the flat sheet and she pulled that one out as well. She brought it over and put it up on the bed. This was so amazing! I mean, yes I was asking her to do it, I just didn't expect her to.

I was getting even more exhausted so I asked her to help me pull the sheet into place and straighten it out. I'd point to a corner and give her the commands and she would pull it until I told her to stop. Then she helped me do the same with the blankets and bedspread. Its hard to believe but, Rosie makes beds!"

I Feel a Little Naked

I checked my stats today. I had no idea how many of you were reading my blog! First, I'd like to say, "Thank you!" Many times I'm writing along, thinking I'm mostly talking to myself, and pretending that there are actually people out there who are reading it. I feel very humbled that you are there. I also feel a little naked. GFETE (Grinning from Ear to Ear) It's the pouring out my life, with all the gruesome details of my condition. It makes me feel vulnerable. When I first started writing, it was because I was inspired by my youngest sister who rode acrossed America on horseback. She put everything on the line. She made herself vulnerable. And she grew tremendously because of it. I had decided that I was going to do that too. It's just a little easier when you think you are all alone... Kinda like when you think your alone with the baby and your making all kinds of googley faces and you look up to catch 3 people standing in a doorway watching you, grinning from ear to ear. Kind of like that, heh, heh.

I know that many of you probably know first hand what it feels like to be me, you are TI yourselves. You probably know all about feeling vulnerable. We are. I figure many of you know someone who's TI, you probably 'get it' too, though the magnitude is different. Some of you are just learning about it, and I pray you never experience being TI, or a loved one in your lives being TI and that as you read my posts perhaps you'll begin to understand us and be able to help someone in the future.

Part of why I'm writing this is to provide answers or insights to others. Part is so that what I've learned and experienced doesn't die with me. Part is just crying out in the darkness, alone, afraid and feeling forgotten. Thanks for being there, it helps me to feel less alone.

Friday, November 18, 2011

A Cause

One of my lovely sister's lost her job and is devastated. She is experiencing the same isolation and despair TIs go through when they get jettisoned from society. Suddenly abandoned, feeling worthless and spiraling into depression. You know the worst thing about it is that she didn't do anything wrong. She is honest, ethical and genuinely concerned about both her staff and those in their care. Her work ethics didn't fit with the new management company, so they used her to make the transition, then fired her without cause. A casualty of 'profit margins.'

She was pretty shaken. She doubted herself and was becoming depressed. So, I shared what I've learned in the past 7.5 years of confinement and predominantly isolation. You need a cause. When you have a cause that you believe in, it takes the focus off yourself and allows healing to come in.

I'm sharing this with you today, my readers, in case you find yourself in living conditions that compel you into depression. If you can help one other person a day, your life can become a blessing. When your life is a blessing, you yourself are blessed. It's amazing. :-) Its wonderful to feel valued, even when the rest of your life is in the toilette.

I have several causes, that I actively work to support. Of course I have a lot of time on my hands... And I figured with my injury, I most likely don't have much time left. It is a good practice to "live every day like it's your last." I never could take that seriously until I got this disease. Now It is my reality. Talk about "lighting a stick of dynamite under 'neath me' to get me motivated!

My sister was searching for a cause and tried many different ideas. She found that it was necessary for the cause to be inspiring enough to outshine the depression. She says "keep searching until you find the right one!"

Saturday, November 12, 2011

A Weekend That's Actually a Weekend

This morning, I actually have a weekend that's like a normal weekend. I get to relax!

O.k. That didn't last. I just got a call from my daughter, her flight was cancelled. LOL

WEll, I was going to write that "Though I love my family, they all happen to be gone this weekend, and I was luxuriating in the thought of a much needed rest." Since my daughter is coming back home and flying out tomorrow, and the guys are returning tomorrow, looks like there will be no languishing for me!!

Ever noticed that in your lives? It seems that our lives, these days are filled up with more and more nitpicky paperwork, that we must do. Errands that we must run. Stuff that demands our attention and never lets us settle for even a few minutes. It's a bit more amplified for TIs, as we get so freaking exhausted we don't even want to get up and pee, but I see it's the same for so many normals. Just yesterday I was posting on Mercola and a dear friend there went from 16 points to 0, for her comment. She was non-plussed. I was too, so I re-read it to see what could possibly be so offensive. She was advocating home cooked meals and how little time it takes...

I actually think it may have been people that were so overhwhelmed already, rushing back and forth, that knew home cooked, organic, unprocessed food would be better for them and their families, but bought premade anyway, and that made them feel guilty, when they saw it in print. I felt saddened. They must feel trapped.

I hear from a lot of TIs that know doing things from scratch would be healthier, but don't feel they have the energy to spare, in order to start the from scratch cooking. I have as one of my "nudge along projects" a thirty minute cookbook. So I thought I'd put a recipe here for all of you to put into your weekly meal rotation. Steve Brown wrote, "Understanding the Ancestral Diet...(for dogs)" and in it he advocates (at least) one day feeding balanced raw. He talks about how much it will benefit your dog. So I figure, if you serve an easy homemade, organic meal at least one night a week, it will benefit you! So here's a recipe...

This stew is named for a line in the musical "Seven Brides for Seven Brother's" starring Howard Keel and Jane Powell, Jane's character responds to Howard's when he asks her to pass the ketchup for her stew, "My stew can stand on its own two feet!" This one can't. My husband loves ketchup, and puts it on everything. So I gave up and just put it there to begin with. It's one of his favorites and makes this soooo easy to fix!

pre-heat oven to 350* F. Feeds 4 big eaters

1-1.5 lbs. Organic, grass fed lamb burger or stew meat
2 C. Chopped organic sweet onion
5-7 lrg. Diced organic garlic cloves
3 chopped stalks organic celery
5 peeled, sliced organic carrots
1/2 - 1 lrg. Chunked organic red cabbage (depends on how much room in your casserole you have! Mine's 2.5 quarts)
1/2. C. Annie's Naturals Organic Ketchup, twice.(always check the label to make sure it stays organic, and additive free.)
Salt & pepper

In a large ceramic covered casserole place the first 6 ingredients in order of appearance. Cover with 1/2 cup ketchup and season with salt & pepper, from your shaker. Don't over do it!
Cover and place in the pre-heated oven. Bake for 30 min. Remove from oven, stir, cover with remaining ketchup. Replace lid and bake for another 30 min. Remove, stir, you're ready to serve.

Dinner smells delicious and you've spent less than thirty minutes in the kitchen. :-) I really hope that makes at least one day in your life healthier and better.