Getting rid of the black cloud that has been following me around

Or, how did my life turn in to a bad country music song? My friends dying, my back pain, the oil tank, the car, the cat's diabetes, stress from work, and I can't remember it all now because there is just too much! My goal is to get rid of the black cloud and return to happier times.

First I am going away this weekend on a Casting for Recovery retreat but this time as a volunteer which means less fishing I think but I still think it will be great. I have prepared myself with a proper pedicure to go with my fishing.

I will drive the reliable ten year old car with 135,000 miles on it and not the crappy new car with 8700 miles on it. We got it back yesterday and they couldn't find anything wrong with it.

I will not go down into the basement so I have to look at the oil tank until it is fixed on Wednesday. If I pretend its not there, I can't stress as much about it. (This is my mature attitude coming through - if I don't see it, I can't let it bother me.)

I will not take my laptop with me this weekend so I will have to relax more instead of dealing with work.

I will sit in the sun (wrinkles & cancer - who cares right now? and relax. (Sunscreen and hat). I will read a trashy novel on the beach today before the retreat starts.

I will get rid of the little black cloud that has been following me around.

Clinical Trials

I did not participate in a clinical trial. I was offered one and was considering it (and probably going to participate) when I found out that I actually didn't qualify. This article in Parade Magazine (the medical resource not to use) this weekend on clinical trials I find to be very negative. Let's start with the title: "Are Clinical Trials Safe?" Well, gee I didn't think they were not safe until you started questioning their safety. It also talks about risk, blah, blah, blah. Why don't they discuss the importance of them more and how more people should participate in them? I found this very disturbing.

Clinical trials are very important and it is unfortunate that more patients are not offered them. They are part of the process where drug companies test their new drugs to make sure they work as expected, test doses, etc. There are four stages in clinical trials: Phase O is initial human test to see if the drug is safe, Phase I is establishing safety and tolerability of the drug among other things, Phase II is designed to assess how well the drug works, Phase III is for a definitive assessment of the drug, and Phase IV is on going testing of how well the drug works and can continue after the drugs launch. There are lots of Phase III trials around, because they involve larger groups, and people should be encouraged to participate. They were explained to me that you are always testing against the current protocol for something that might be better. So you might be getting better treatment than what is available. (Check wikipedia for a non scientific overview and clinicaltrials.gov for lots more information on current trials.)

If you participate in a clinical trial you are helping others. Think of it as a chance to give back. It also may save your life. Perhaps Parade Magazine should stick with its celebrity coverage and skip the medical information.

New Healthcare Reform

But first this is in the category of you can't make this stuff up: Why would anyone put pet baby snakes in their pockets? I think a cage would do much better.

There was an article the other day on the number of bills in front of the legislature to expand insurance health coverage. There are something like 70 bills trying to mandate coverage for a whole range of things from vitamins, aquatherapy, cleft palate repair, wigs for chemotherapy patients, etc. I am not sure I agree with all this.

You buy the amount of insurance you think you need/can afford and hope that if the worst happens you are covered fairly. The premiums we pay (here's my non technical understanding on how insurance works) go into a big pool that the insurers use to pay the medical professionals for the care we receive. If insurers become mandated to pay for more things, guess what? The pool and our premiums will need to be bigger. Or insurers will stop paying as much on other treatments.

Taking the example of wigs for chemotherapy patients (or cranial prostheses) of which I do have personal experience. My insurance did not cover them. I know people who were appalled that the insurance did not. I was told by well meaning friends I should fight this, blah, blah, blah. I didn't. I bought a relatively inexpensive wig and deducted it as a medical expense on my taxes. I have friends with insurance who bought an expensive wig and then never wore it because they hated it. I had other friends who just wore scarves and know one person who bought a bright blue wig and one who bought a bright pink wig. So should insurance cover the fact that you didn't like your first wig or never wore the damn thing? Should you be able to get a second wig on insurance if you don't like the first? I don't know.

But I do know my insurance didn't pay for my wig but they did pay for a lot of other stuff. If someone said I had a choice between full coverage for chemotherapy or partial coverage and a wig. I'll take the full coverage. My insurance bills were relatively small for the duration of my treatment.

There are also the modalities that help one in a million or one in ten million. Should there be a mandate that they are covered for all? If vitamins are covered, are we all going to start taking them and be healthier? We are trying to keep health care affordable. There also is some logic to changing the system on how the reimbursement process works but that's a whole other issue.

Okay, enough soap box for now. Today my back hurts (now there's a change). My rash is better. I think it is a reaction to one of my prescriptions (that says you may develop a rash on the warning label) so I am going to stop taking it for a day or two and see if the rash goes away. It feels better today already.

The car is not fixed. They called yesterday and said they couldn't find anything wrong but were still checking and want to keep it for another day. Hmmm... do I feel reassured by the fact that they didn't find anything wrong? No. I'm not driving it anywhere until it is fixed. We bought a new car so we had a reliable vehicle. I don't consider it reliable at all anymore. Yes, cars break down, I realize that but to have one that breaks down for no determinable reason is not acceptable. In case you are wondering its a 2009 Nissan Versa which right now I would not recommend to anyone.

Because I needed something new

These are lotus blossoms we saw in RI in a garden on the side of the road. To give some perspective, each leaf is about 18" across. They were huge. But buds were the size of a grapefruit.

I woke up in the middle of the night with a rash on my leg (and back pain). This isn't a little bitty rash, but a nice wide spread one that is actually on both legs, my chest and left arm. It does not really itch. It does not look like poison ivy. It is just irritating. My husband's theory is that it is caused by stress. I don't know but I do know I am going to Walgreens the second it opens to get some anti itch stuff... The stuff we have is all expired...

It is possible I have too much stress in my life. My brother gave me a mini-lecture on stressing too much (and suggested I be more like him who never worries about anything but admits that is the other end of the spectrum). What do I have for stress?
- Death and funeral of a friend. Death and funeral of another friend. Death of an old friend, who I haven't seen in a long time but is still sad.
- Work for one job - hurry up we have a deadline, oh did you rush? We don't have the material yet but we will tomorrow. Do you think we can get it out tomorrow? We promise to have the material for you so you can do it all tomorrow. Can you fit it in? Please?
- Work for a second job - just having to drive there and figure out their system...
- Work for a third job - can you do phone research interviews with our clients? How are they coming? Are they done yet? Did you get any good quotes?
- Work for a fourth job - can you keep me posted on everything you are doing? Did the release run? Is it on the calendar? It has to be done THIS week.
- Work for a fifth job - where is that proposal? Can we set up another meeting? Can you email me what you have and we can decide if we like what you are doing?
- Stupid car that is new and broke down and we had towed that we took to the dealer yesterday (after coming back early so we could get it to them) and then they didn't touch it at all yesterday (but did give us a rental) but will call when its ready.
- Back pain so that I don't get to sleep.

No I don't think I have stress. Do you?

So yesterday we left mid morning to return home. We stopped and played mini-golf. We'll just say I did really badly (but can I blame my back?). The car actually would start so we drove it to the dealer. I did some work - that I thought would all be waiting for me but wasn't. I also cleared out some email and started laundry and cooked dinner. Today I am going for a walk, doing some work, and going to my other job. With my rash but after I stop at Walgreens.

A Glimpse into 'how the other half lives'

We are staying at a B&B and there is another couple here as well. Last night we coincidentally decided to spend the evening eating cheese and crackers on the porch instead of going out for another meal. They are probably 15 years older than us and from the south. They are scouting retirement locations for their future in another five years. She still works. He is on disability because he injured his shoulder and had to have tendons reattached, etc. It doesn't sound like he is going back to work (but I think he's also over 65) and is permanently out of the work forced.

He was saying how he is so glad that he had health insurance to cover his surgery because without it he might lose his house to pay the medical bills. I think this was his first big medical event. Ever. I had forgotten what it would be like to not have your medical issues run your life, to not think about your next doctor appointment, to get to your sixties and first experience a major medical issue for either you or your spouse. To me that is pretty amazing.

I find their long term plan of retiring a nice optimistic way. We have talked a little bit about retirement and what we would do but, maybe because of our age as well, we haven't done much thinking about it. It was nice to see people planning another 20 years together. I think to me that is 'how the other half lives' - the worry free life with a long term plan.

In the meantime, our weekend has been nice. We wanted to go spend the day on the beach yesterday and woke up to pouring rain and a gloomy forecast (with a giant blob of green on the radar map headed our way). Instead of the beach, we headed for Newport and carried around the 'rain prevention' umbrella all day. We did a tour of Fort Adams State Park (definitely worth a visit if you are in the area) and the Museum of Yachting before heading off for lunch in town. We also stopped in the little village of Wickford (1 blinking light, two blocks long) and did a little window shopping before heading back here to be generally lazy and eat cheese and crackers on the porch.

My back will last for about two hours of standing and doing stuff before I need to sit down for a bit and possibly ice it as well. Today it is reminding me about how much standing I did yesterday. After breakfast we are heading home to deal with the car, my work deadline and the millions of emails I have piled up from various consulting jobs. I need to fit in a walk as well.

One Hell of a Day

It started with some running around and packing to go away for the weekend. We were out the door shortly after 830am, stopped at the library to return overdue books and then off to the funeral. Which was very sad and depressing. 39 is too young. We left the funeral, missed our turn on to the highway but found a yummy lunch. We called the B&B to say we were on our way and would be there in a hour or so.

Then all of a sudden the car lost power and died. On the interstate. In the middle lane. Going up hill. We barely coasted to the side. Walter was driving. This was the NEW car with 8000 miles on it. Then some moron decided to pass on the right in the breakdown lane (but missed us) so we decided to wait on the other side of the guard rail. But the tow truck driver was there in about 10 minutes. (After reading teh manual and finding out the towing eye was in with the spare tire under our belongings so we unpacked the back of the car on the side of the highway and then repacked.) We were towed home where we said hi to the cat, repacked into the other car and left on our trip. We got here around 4... Went to the beach for a little bit and out to dinner. I had clams for my dinner so my day improved. (The car is going to the dealer when we get home tomorrow. I hope they have a policy for loaner cars for owners under warranty.) Then my back hurt a lot last night...

We woke up to POURING rain. The weather radar shows another giant thunderstorm headed our way for the day - so we aren't going to the beach. And my back hurts.

But the B&B is nice. They have two outdoor cats, one dog, goats and chickens. And a nice garden. Its very quiet. We like it, which is what counts.

A funeral

This morning we are going to the funeral of a 39 year old who had no significant health problems and lived a healthy life style. It will probably be pretty awful. He was so young. It was so unexpected.

I have been thinking about Shean's death and the recent death of two other friends. Jill had a life time of medical issues relating to severe asthma. She went for lots of different treatments and tried all sorts of things to help her out. But she still sang in a choir, worked, traveled, and loved life. Andy I admit I had lost touch with him for probably the last 15 years and all I know is he died after a brief illness. Three people struck down in the prime of their life but none of them endured months of suffering and pain.

I think this is where I am going to. Quality of life and palliative care are very important. If you are sick or stressed, do something about it. Doctors I think are understanding of the need to maintain quality of life. If yours doesn't, find a new doctor who does! But also do your part, speak up and tell them what's wrong, what's bothering you, what hurts. Go to follow up appointments and do what they tell you (provided its reasonable - I can tell you stories of unreasonable crazy things I have heard...).

If I had a choice of dying quickly with no advance warning or ten years in a nursing home, in diapers unable to feed myself, not knowing who was there. My choice would be a quick death without months or years of a horrible life. Okay, this maybe really morbid but we all should think about it. I have three friends who died unexpectedly. I personally don't know how well they had planned for life's unexpected events but their families now need to pick up the pieces and figure out what they wanted and what they have to do now. Maybe this is a prodding to get a living will, write a will, discuss options with spouse, etc.

After the funeral, we are going away for two days. We originally were going Friday but delayed our trip by one day so we could go to the funeral. I hope some downtime will relieve some of the stress. Work has been stressful as well.

But kitty has a babysitter - a professional pet service who comes and plays with him and gives him his injections. We will go stay at a B&B on the beach.