Wednesday, March 24, 2010

Falling of the Plateau

Last week, I had the pleasure of taking my vehicle to the dealership, if you can call it that. The pleasure, I mean. The engine light was on. I couldn't fix it with oil, antifreeze, or transmission fluid. They plug your vehicle into the computer to find out what's wrong. That is an immediate charge of $89. Why? They don't have to spent 2 hours looking for the problem. Then they don't have the part, but they can get it. Also, along with the fee for the sensor, there is a list of things my vehicle needs that will total $2,000. I decide to just do the air sensor. It won't take too long, so I decide not to have them shuttle me home.

Alas, the trip starts going downhill fast. They are inflating gigantic balloons near the waiting room. I try to wait outside, as I have done before, but the temperature is 32o. It won't hit 50o for a couple of hours. I spend my time in the service area next to the pile of tires, no chair to sit on, but I can lean against the wall a lot while I read. also, for my enjoyment, it's all windowed so I get "free" entertainment watching all the mechanics working in their bays. I can't figure out whose working on my van, but the guy in the next bay is snapping his latex gloves on & off . My hood is open. The airborn rubber protiens have become hitchhikers on my engine. I end up spending 4 hours there because the part was only available at the furthest dealership.

The hives are popping up in my mouth, and my driving is poorly focused as i drive home. I'm having a reaction. Of course. I can't stay much longer than 15 minutes in any public place. i'm usually homebound for 2 days with a reaction and stoned on benadryl, even tho' I know it can take 3 days to recover. Well the 3rd day, I was still in the reaction. The 4th day I had to cancel an important fun day for me. (Latex Allergy allows me about 3 of those a year and not necessarily the ones most important to me.) The 6th day I get some groceries. I'm still reactive or I'm rebounding. After 7 days stoned on benadryl, not getting out of the reaction, I am frustrated with my whole life and what I can't do. On the 8th day I hold the benadryl and get into the doctor's office for a script for prednisone.

I haven't mentioned all the anger, frustration, feeling like crap, and the revelations about what I can no longer do that have gone through my mind this past week. I do know in my heart that this disease is progressive. There is no textbook about NRLA, just those of us who have it.

Sal

Saturday, March 13, 2010

Long and Short Strides

I have actually done a bit of turnaround from last post. i made more changes than I thought I would. I'm up to 6 glasses of water a day. I'm eating some green salads. i found dressing that's spritzed on to salad to decrease the amount used. It is good. I would soak my salad before in a pool of dressing.

I started drinking shakes for breakfast. I haven't been a breakfast eater for years. The Curves shake is very good. I'm also using the Special K high protein. It has a little more fat, carbs, & calories than The Curves, but it's convenient when on the run in the morning. I'm beginning to shop for different foods. I'm reading the nutritional labels. Before, I was looking at the extra ingredients, checking for what I need to avoid.

I read the introduction to my neighbors program for ThinWithin. It looks like a gentler way for me to manage my meals and manage some weight loss. I'll be using that program as well.
they rate meals on a scale: 0 is really, really hungery, 5 is full, and 10 is compared to Thanksgiving dinner. I've already figured out that my qt. square containers have 2 servings. Before, I was finishing off the whole container in one meal. I've had less midnight snacks this week.

The visit to the allergist was good. My PFT's (pulmonary function tests) have improved. He is just as pleased as I am that I'm exercising 3 days a week. I haven't done walking on days between yet. I did know I had pushed too far. A bad reaction on tuesday that I'm still having trouble recovering from has kept me on benadryl for 5 days now, even with homebound days.

I have started my Curves journal, even tho' I haven't really begun phase 1. It helps to affirm positive changes I've already made. I'm also following theskinnyonline blog for extra support. Lisa has gone thru far more than me in weight management. Her words are loving and forgiving, very soothing for me.

Because I'm so reactive right now, I've only been to Curves on Monday this week. I did know when I began that I would run into limits, albeit scheduling my trips out of the house to limit rubber exposures, just having an allergic reaction and remaining homebound, or beginning to react in Curves. I don't want to give up Curves if I can manage it. The socialization and positive atmosphere help me so much. Right now is a super busy month for me with lots of doctor appointments scheduled in with the places I need to go.

Sal

Sunday, March 7, 2010

More Than I Can Chew

The last several weeks have been very busy for me. I've been helping very good friends(3) thru serious health issues along with support group moderating, a couple of medical appts. each week, and scheduling in my curves workout 3 times a week, along with grocery shopping, and trips to the drug store without overdoing my rubber exposures each day.

This past week, I've been learning more about organic foods and checking them out in the stores. i've begun learning about the hazards of PBA in our canned foods since the 50's, and also found in some plastic storage containers. This is worse than food handled with latex gloves, and it's also approved by the FDA. I joined Weston A. Price Foundation, my local chapter, and began learning more about nutritionally dense foods(not found in the grocery store). This is what organic foods are, pasture raised, no hormones or antibiotics; essentially safe and very nutritious food that all of us should be eating.

I came across a website while googling for locations of accessable spring water. Well, I drove around town to check out one that had been pointed out to me a number of years ago. I couldn't find it. I think the access was closed. The other may be a possibility. It's 200 years old and overgrown with brush. It may not produce all the time. Then I wonder, how do I learn how to safely access or get the spring active again? It just came into my head. Maybe the DEC can help me with this one.

On Thursday, I spend to long picking up extra groceries to donate to my food pantry. The lines at the checkouts are too long, so I use my rescue inhaler while in line and take my benadryl before i leave the parking lot. This is safer because I'm only a few minutes from home. The rest of the day is strung out on benadryl every 4 hours.

On Friday, I should be homebound and on benadryl, but first I go to get measured and work out at curves. I had signed up for Saturday class for weight management. Then I go home and continue with benadryl every 4 hours for another strung out day. I began having hives in my mouth. This isn't cool, it's really a systemic reaction, but doesn't go any further. Whew, no need for an epi-pen and call to the allergist. By my exposure rules, I should stay homebound on Saturday.

I went to the class anyway. I was ok in there for 1 1/2 hrs. Yippee! But as I read what I need to be eating for weight loss, after I've gotten home, to figure out a new grocery list, I start slowly going into the meltdown that almost became major. I was still having trouble on Sunday when I went to check out organics in a different grocery. I had decided that I was going to chunk down my approach to this diet, but I was still getting anxious. I got the organic butter I wanted to make my own ghee and a few other things. One bag and an immersion mixer was $80. Yikes. On the way home, I prayed for help and guidance.

The answer came. Chunk it down. My activity level has increased with working out. I'm forgetting that I'm disabled. I'm forgetting that I'm scheduling everything so I can just fit my workouts in with buying groceries, picking up prescriptions, doctor appts., tests, and trying to manage my home(which I'm way behind with). I'm also forgetting how old I am. I'm not ancient, but I'm not 20, or 30, or 40 either. I'm not giving up, I just need to watch my times outside home more carefully. I need to stop testing to see how many exposures to rubber I can have and then end up calling 911 and ending up in intensive care on a respirator for a few days.

Sal

Thursday, March 4, 2010

health care and the cost

i've been away for a bit. learning about organic foods, spring water, and BPA(nasty stuff).

at the moment, i've just finished a letter to go to numerous government officials. we elected them to take care of our issues. i certainly hope they will earn their paychecks doing the best for us. i have shared an important issue with them that goes right along with health care. it's billing for health care. we pay into health insurance and medicare so that we can receive good(i mean excellent) health care.

excellent health care is debateable. from my career as a nurse, i do know when ill people aren't even receiving adequate care. i'll talk about that another time.

what is really bugging me right now is inappropriate and erroneous billing for health care. maybe the erroneous billing was meant to happen to receive maximum payment; reduce the loss financially. the prices charged for tests, care, and specific monitoring are outrageous. who set those prices? i can lay in a bed in the ER code room for 3 hours d/t a lab error and be charged to medicare & me $13oo. this total doesn't include the ER doctor or the radiologist. i was on a cardiac monitor, with an IV site available, and pulse oximetry(monitoring oxygen level in the blood, a clothespin thing on my finger) with the crash cart right there in case my heart stopped beating, but not a body in site most of the time. yes, medicare & i got to pay for that lab error.

my big beef has to do with improper billing. the hospital wants as close to what they charge for a health care service as they can get. my allergist is supposed to be paid thru the hospital for his services. the hospital does the billing for this office because this office is a part of the hospital's business. my bills for this are supposed to be covered by worker's comp., but the hospital has billed & received payment from medicare & comp. they also repeatedly bill me for the slack. they haven't corrected this problem in a year. i am in the process of pursuing a solution further.

what really concerns me are the people, not in health care, who are billed improperly and have no idea that they should question the bill.

sal