Monday, November 1, 2010

A Day In the Life, part 2, or Let the Protocols Begin!

Sludgy, that's the medical diagnosis. No really. I've been told by my Dr. and RN that my body fluids are sludgy. That's part of being toxic. One of the chemicals I've been exposed to, since losing my immune system is 2,3 dichloropropene. It's a fumigant for potatoes, and a blood coagulant. At one time during my treatment my blood was literally dark brown and thick, like chocolate syrup. My lymphatic fluid is sludgy, too.  So a huge part of my detox protocols have to do with flushing and thinning my bodily fluids. That means a lot of liquids and a lot of eliminating.

I'm supposed to sauna 3 times a day. I can't sauna until I input both liquid and minerals/electrolytes. So that's goal #2. Get coffee! Coffee, the organic non GMO kind, is a wonderful source of anti-oxidants and a blood thinner. Much safer than warfarin and tastier too. (goal # 1 was get dressed. I never wander around in robe and p.j.s. I could get stuck downstairs like that, and never make it back up stairs to change...) Many times, by the time I'm finished getting dressed and doing my hair, I'm exhausted and ready for a nap. I just take step #1 for granted.

I operate on a point and shoot procedure. So, I point myself t'wards the coffee maker and project myself in that direction. The level of exposure and the occurrences of the night, determine the speed and trajectory with which I arrive. If it's been a bad night, even the fact that I need to grind more beans can be overwhelming. Many times my level of exposure results in the same kind of ataxia (loss of muscle control) that I wrote about last time. You focus; you push yourself; you struggle with even the simplest tasks like getting out the beans; opening the bag; pouring them into the grinder; putting on the cap... and on it goes. Some mornings I ought to get a medal, just for making a cup'. It is a relief, to sip that first strengthening mouthful. I need the caffeine. Not like an addict. On good days, I can do without. I need the sugar. I'm porphyric and hypoglycemic. I need the cream, I have acid reflux (a minor form of toxic injury. Generally an indicator that you, yourself are toxically injured - reader.)  So it begins.

Taking my cup I approach the "medicine chest.' It's a lovely tooled leather box my sister-in-law Cheryl got for me. In it are all the nutraceuticals that my Doctor prescribed. It's packed full. There are more in the cupboard, but I rotate them in and out. Each day I determine how many of the core supplements and which and how many of the supportive supplements I need to take. The optimal goal is to get enough repair, that I don't have to take any, anymore. I'm a long way from that. I measure them out and fill my bowl.  Ryan and I got these cute blue and white rice bowls from 1st Alternative, in Corvallis. They have whales on them. The pretty bowl and the association behind it is a "brightening mechanism." Something I focus on to distract myself and increase endorphin production.  My stomach is nauseous at just the thought of the number of caps I now have to take.  I also must drink the electrolytes. That's another glass of liquid with powdered cal/mag/potasium. And it tastes bad. I could put it in juice, but organic juice is hard to come by here. I drink it in water.

Taking my electrolytes, coffee and supplements I moved to the table and  have "Bowl of Vitamins ~ breakfast of champions." When you are taking anywhere from 12-36 (or more) caps a day, you pretty much don't have an appetite. I'll take as many of these at this time as I can stand. I'll take more every time I pass the table. I do, do better, if I eat some protein. Since I eat once or twice a day I try to have veggies at every meal. Omelets are great. Problem is, sometimes I'm too darn sick and tired to cook one. Nuts and cheese are the fallback plan. Leftovers, if I managed to cook sometime recently, work too.  At this point I just focus on the meds. Then I have a choice. I have to set goal #3. Is it get to the chair and rest, or go upstairs and...? I can't finish that statement because the second choice requires an immediate goal re-set once I get to the top of the stairs, that becomes goal #4. If resting in the chair, to regain strength is goal # 3, then after the necessary amount of time, which can range from 15 min. to an hour, then go uptstairs is #4. Point and shoot.

Part of detox protocols is exercise. Non aerobic, low impact, exercise that moves your blood, helps to detox. I'm supposed to do that, followed by sauna time. I use the stationary recumbent bike. If I'm really sick and don't have the energy for that I choose to go directly to the sauna. Unless, I reek. (or got an exposure) Then I go to the shower, then sauna. Choices, choices, choices. Point and shoot. How many minutes of excercise? How many minutes of sauna? What tempurature? Every move, every decision, weighed and evaluated. After the sauna, another shower. Get dressed. I'm exhausted. Find a chair, crash. Rest. How long? More goal setting, point and shoot.

I have animals. Currently 2 dogs inside. I'm watching Ryan's while he's working in the field. Ron, when he's here, does the outside animals. Ron will do the first morning potty. I do the rest until he gets home. Do they need to potty? Did I detour to feed, on my path to the coffee pot? (typically yes) Do they need attention? Responsibilities. These are important. They are important to drive you forward. Before Toxic Injury I bred, sheep, cattle and llamas. The livestock babies taught me an important lesson. You have to strive to survive. If you don't struggle, you die. Bottom line. Having something that you have to do, no matter how hard, is imperative. Chronically ill people who have everything done for them significantly decrease their chances of survival and recovery. Not only am I responsible for the dogs, I'm responsible for the laundry, the cleaning, the dishes, the cooking, the bills. On good days I try to tackle a home improvement project. Of course it's executed at a much slower pace and in and out of exposure windows and exposures.

Ron's great. He'll eat a sandwich for dinner, if I'm having a bad day and can't cook. But knowing that I have to... makes me try harder. Striving increases immune system response. So, even if I can barely think, or barely stand or am having tachycardia, etc. I keep pushing forward. I keep doing my chores ~ as many as I possibly can. When I sit down because I absolutely have to, I try to make it for as short as I can. Push, push rest. Push, push, rest. Everyday, and everything in that day is like climbing Mount Hood. One foot in front of the other. Do I do as well as I'd like? No way. But, I'm doing way more than I did for a while there.... That's a plus.

I should mention that typically my day starts between 5:30 and 6:30. I've usually completed my first round (thru sauna and preliminary chores) before 10:00. That's when I'll grab that bite of breakfast. Sometimes I get distracted and don't get breakfast till after 2:30. Of course there's been plenty more supplements and possibly another round of sauna/exercising in there somewhere.  There are of course the dogs. They need to be let out several times a day. This can be dicey in the spray season. If I receive notice of spraying, we try to work it out so that they don't have to hold it all day. It's not much different than any dog left home while the owner is at work, with the exception that they stare at me in that accusatory way, with their furry little legs crossed... 

In the off season, I just have the evil neighbor that deliberately sprays toxic fumes just to hurt me. I have to watch out for him. I'm sure that some of you Normals are finding that hard to believe. I get that. I couldn't believe it myself the whole first month that he kept sneaking up behind me when I was out working the farm and spraying 2, 4 D as close to me as the fence would allow. I kept thinking there was some other reason, like maybe he just didn't understand. Then I found out that he was bragging about it and even stated his intent to a deputy, in front of my husband. I guess the deputy feels the same way about TIs cause he didn't see anything wrong with it. It's been going on for years. At this point, amazingly the guy has made himself so sick that he can no longer use pesticides, (yeah!!!) so now, he's sneaking into my yard and spraying perfume. He's dumb enough to think, he's not going to get toxically injured by that either. The courts may not give us justice, but God will.

In fact, this is probably why I "flame" about people who've been told and deliberately don't do the medically necessary accommodations. I found out so many times, that those people were bragging about how they hurt me. I'm at the point now that I must assume that if they've been thoroughly educated and they don't  arrive fragrance/VOC free. It's on purpose. I have so many, really great people who with even minimal education do a tremendous job about accommodating me. Occasionally there's some tweaking, because, quite frankly, it's huge. It's hard for them to think of everything. Its an entire shift in perspective! That and I don't want to overwhelm people so I try to summarize the concept. So it's partly my fault. But I digress...

Then, part of rebuilding me is volunteering. Everyone of us needs something that gives them a purpose. I volunteer for "MCS" Beacon of Hope Foundation. I work under the supervision of "My Fearless Leader," Peggy. We communicate several times a day, thru several media. We raise Awareness and Educate about Toxic Injury. We work to prevent additional exposures and help those in need wether its relating experiences, counseling or durable medical equipment, when we have funding. If it wasn't for Peggy, I couldn't get through this. She's hoed this row, far longer than I and still works harder than anyone else I know (self included) for the benefit of others. It's her understanding, her compassion, her whip-crackin' ( and I mean that in the nicest possible way) that keeps me going.

By about 4:30 or so, I'm all in. I will reassess my meds.; take more if I'm detoxing heavy or had an exposure. I will plop into my favorite chair and gather energy for the final push, cooking a meal. It going to be high in cruciferous veggies and one pot, if I can help it. Ron usually gets home late, so I still have time. Once that's done, I get to retire to the chair for the remainder of the evening. I try to have some handwork there. There's still things to pop up for (like dogs), peeing (part of drinking volumes of liquids all day) and the evening sauna, which works better if I don't wait until just before bedtime, but it's more or less coast, after 8:00 p.m. Since this is the time that Ron get in, I try to stay up to spend some time with him.

Next time: Mandatory Positive Reinforcement

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