Fibromyalgia foibles

I have been taking my time to deal with fibromyalgia as it is somewhat complicated. Its not easily understood by most people - as it can have many differing symptoms - all of which have one thing in common: PAIN.

My husband knows that he doesn't understand fibromyalgia either and he wants to. He signed us up for a community education course at a local school on fibromyalgia. Originally only he was going but then it turned out both of us were going. I mean I should probably learn as much as possible about one of my many ailments. I know how to spell and pronounce it but there is obviously a lot more.

We went to the class. As expected it was basically a local practitioner shilling for clients. What was interesting is that she is a certified acupuncturist, Chinese herbalist and a practitioner in Western  medicine so she combined both schools of treatment. She also could explain the fibro pain points to my husband so he understood more.

Some of her information was  a little dated but she did offer some options and thoughts about differing triggers for fibromyalgia - such as major stress. I said how about a cancer diagnosis? She thought that was a possibility.... See, cancer is the gift that keeps on giving.

Coincidentally, I received an email from the National Pain Foundation for a survey on "Do fibromyalgia medications work?" Of course it included Lyrica and I completed it and signed up for their newsletter. I mean I should be in their fan club considering on how much time I spend in pain even though I am on so many medications.

The NPF is different than the American Pain Foundation which is different from the American Chronic Pain Foundation which even has a local support group. But then there is even the National Fibromyalgia Association.

But I still need to educate myself. My husband did learn a lot at class. But still I have to deal with my fibro... and the fibro fog that comes with the pain.

The cancer patient's interpretation of the doctor's advice

I came upon this article by a surgeon who has partnered with some cancer patients to come up with this advice when you are blindsided by cancer. While I agree with it overall, of course I have a few comments.

His advice is summarized as:

• Take a breath, seriously
• Own your cancer
• Don't run to the internet
• Select your physician partners
• Understand two critical features of your cancer

I agree with to take a breath and try to relax.  You are not going to die tomorrow (unless the bus doesn't miss). You have time to breathe and try to figure out what is right for you. You can take the time to absorb with what you have just learned. Go home, sit down and think about what you have learned and what you want to know. Then you can get back with your doctor for more information and options.

Own your cancer and your life. Don't just give up. Keep ownership of your life and take ownership of your cancer. Be a participant in the decision making process. Get a cancer buddy/caregiver to help you through this and hold your hand, bring your bowls of ice cream, and glasses of wine.

I think you should go to the internet for information with the caveat that you find out the good places to go for information on your cancer. Do not wildly Google your cancer and the words 'death rates' - you will only stress yourself out. But if you have information to direct you to where the information is about your cancer where you can learn the right kind of information which is not a pack of lies, aka a pile of hooey. My tip, if you do not know where to start, always start with the American Cancer Society.

I never really have selected my 'physician partners'. What I have done, is ditched any which I did not like. But I have never physician shopped or second opinion hopped.

Two critical features about your cancer are:

"First, you must learn how your specific type of cancer behaves, as each (breast, prostate, whatever) is unique. Second, you must understand your specific cancer stage."

This will help you greatly to understand where you are and what are your options. You are putting a name on it. Which leads me to my personal requirement:

You cannot have an ailment or take a medication without knowing how to both spell and say it properly. This is another way you take ownership of your cancer and learn more about it.

Okay, so the patient came through with agreements and disagreements but I think we both can agree that cancer should not take you over. You are still you.

Today my attitude is "I don't care"

I would have started with some extra adjectives in there but didn't think they were appropriate for the title. How has my week gone? Well if you are reading my posts, you can tell it hasn't been the best week. By the time I got to work yesterday afternoon my co-workers said I looked either very tired or "enough already".

But I still had to work for the afternoon and go car shopping. I was exhausted before car shopping and ended up in bed early - maybe I am over this 'spring forward' crap.

What was the medical roller coaster like yesterday? Hmmm well the part about me was that my doctor's office called about my blood counts and one of them is a 'bit' off and they had questions for me. Of course the doctor is on vacation so they will get back to me next week.

This morning I go to the neurologist to learn what the hell is going on with my hands and what is known as 'bilateral tingling' in medical speak. And it could come back with another 'I don't know' and more tests or an express pass to the hand surgeon for carpal tunnel surgery. Whatever the answer is, I am not very comfortable with this as I associate neurologists with needles and nasty tests.

After that I go to work. As a result of the current car issues (anyone want to buy a car?) I am driving my father's baby - which is a brand new electric Prius with only 4000 miles on it. I am petrified something will happen to it and I will be disowned. He has been to sick to drive so it is actually very nice that I can use it for a few days while we figure out the new to us car business.

I hope to get to the gym this afternoon to work off some stress but am not sure if that will happen because we have to go back to the car dealership and see if we can make a decision. Which car, how much to spend or do we move over to another dealer?

I don't care. I have tuna fish on a salad for lunch which I enjoy. That might make me feel better and less stressed. But other wise I really don't care.

I think I'm going for apathy today to avoid undue stress.

Do you ever have one of those days?

Yesterday I blogged about how it was supposed to be the worst day for the year because of the time change. I was right, it did end up being a really aggravating day but it had nothing to do with lack of sleep.

First it started with we couldn't get the (damn) car started. Its my Saturn that I bought new in September 1999 so it is a bit old. It has a paltry 156,000 miles on it and I thought it should go for a few more years. It needs an ignition cylinder because the (damn) key won't turn on a regular basis. We are sick of pouring money in it so it is time to move on. But its my favorite car. I am not ready to give it up but its time.

I had to jump out of bed and throw on some clothes to drive my husband to work without thirty seconds notice. I wore my pajamas with a sweatshirt and jeans, boots with no socks, and didn't brush my teeth or hair. I got back home at 8 am and had to be at the hospital for a 9am EMG. That meant I had approximately 30 minutes to shower, dress, eat, brush my teeth, pack my little bag of stuff to take, and my gym bag for later.

I rushed to the hospital, got there in the nick of time, after getting stuck behind three (damn) school buses.

Have you ever had an EMG? They suck. Yes that is the only word to describe it. They send jolts in your hands and then they stick needles in you and grind away tensing muscles that really hurts. Definitely not a fun test.

After all that the answer was inconclusive for carpal tunnel, no real idea why I have tingling in my hands, and off to see a neurologist. I hate inconclusive test results, especially when they are nasty ones. Then I went to the gym to work off some of my aggravation.

Does anyone want to buy a car?

The worst day of the year

Today is the worst day of the year for Americans. We are all going to be wandering around sleep deprived. Watch out and stock up on coffee.

I heard yesterday on the radio (which is much more reliable than the internet) that it takes about a week for a human's internal clock to adjust to this hour ahead business. Monday is the worst day for accidents nationally as there are many sleep deprived drivers out there. Productivity will be down as well.

I have always hated the time change weeks. I just never get enough sleep for a week. It makes me whiny or even cranky. Crabby too!

To top it off, I am looking a weather map which shows more than a foot of snow for the middle of this week. If we had to spring forward, where the hell is spring damn it!?

Oh dear, crankiness may be showing already. Oopsie.

I took a step back

Even though I only work part time, sometimes I feel as if I am rushing from one thing to another all week long. Recent weekends have included family and other events where I have not had the downtime.The problem is at the end of the weekend I do not feel rested physically or emotionally.

This weekend we ran away. Yesterday had a predicted high around 47. Based on that and the fact that it was low tide at 1030am, we ran away and walked on the beach for an hour. It was a sunny day. It was low tide. There were people with horses all over the beach. It was amazing. It was what we needed. You will note the snow on the dunes in my blurry picture.The water temperature was 36 so we opted not to go in.

We stopped for an unhealthy meal of fried seafood and came home and relaxed and had a healthy dinner. Yesterday topped out with a high of 55.
Today I slept in. I feel much better physically and emotionally.

Tomorrow will be a long day. I am having an EMG in the morning to test for carpal tunnel. That is a not fun test of needles and jolts. I wont feel relaxed after that. And then I will go to work if I can. Ick. Not fun. I will just ignore that until tomorrow.

I used to be jealous

Back in 2007 when I had radiation for my breast cancer. I had to undergo the traditional radiation treatment which meant 37 visits spread over 7 weeks - five days a week that lasted FOREVER. I knew people online who were getting the short version and getting radiation for five days - brachytherapy - with two visits a day. I was jealous because I was (and still am) sick of going to the (damn) hospital.

I had asked at the time and was told by my radiation oncologist that they did not offer the shorter option nor did most hospitals in Boston at that time. A few years later I attended a conference where I learned they were starting to offer the shorter option as well as expanding their other services.

Now new research on women over sixty who had brachytherapy after a lumpectomy are more likely to have a mastectomy five years later. They were more likely to have treatment complications that resulted in the mastectomies.

ASTRO is considering new guidelines for who would most benefit from brachytherapy and cautionary and unsuitable criteria. The number one criteria seems to be that it is best for women over sixty.

Since I do not fit their criteria I am glad I did not get brachytherapy as it could have increased risk for mastectomy. I am not jealous any more.