Fibro Positive Energy is a good thing!

Yesterday I met two super, intelligent, fun, positive women … who have fibromyalgia. I’m busy drumming up ‘business’ for the American Pain Foundation’s September Pain Awareness Month and had lunch with Cathy and Kristine, the founders/leaders of a local Meetup.com fibromyalgia support group.

It was wonderful to speak with two people who despite facing pain every day, don’t make the pain their #1 and total focus. Exactly how I try to be. They are so full of positive energy. I loved them … and they introduced me to Indian food (yup, I’m 54 and have never had Indian food before).

We ate at Azitra in the Brier Creek area of Raleigh. Thankfully, they helped me pick a dish that wasn’t overly spicy. I enjoyed the food, although I’ll want to try it a couple more times before I decide if I want to add it to my favorites list. I’m still probably more of a pizza person!

Anyway, Kristine and Cathy have so many great ideas about pain advocacy and they’ve been doing this longer than I have. I look forward to developing both a partnership for pain with them as well as a personal friendship. So, despite heavy rains yesterday (good for the yard, bad for the driving and the body), it was a great day.

Pool Party!!!

It’s hot in Cary, North Carolina. According to our backyard thermometer we hit 108 degrees – and that’s not even in the sun. Whew! I watched a handful of birds flitting around imagining how hot they must be, so after I re-filled the bird feeder, I filled the bird bath. Our backyard was soon full of a menagerie of birds. I think they sent the message out: “Pool Party at Candy’s House.” I had fun watching the birds enjoy the ‘pool.’

The Hassles of Sleep Apnea

I’ve mentioned before that since I broke my back, I’ve been diagnosed with sleep apnea. My husband says it sounds like I’m gasping for air during the night. And he’s exactly right; that’s what I am doing throughout the night. I tend to ignore it, but sleep apnea is serious and can be worse taking opioids for pain.

Friday morning I woke up doubled over in pain from air in my stomach. Besides the hassles of wearing a mask and a tube getting in the way and the noise of the machine and the need for regular cleaning and … you get the picture, my biggest problem is air in my stomach. It’s not supposed to happen.

The glory of the Internet where you can search for answers on any topic. Here’s what I found when I Googled “air in stomach CPAP.”

1. Get an APAP machine instead of a CPAP. The CPAP machine forces a (C for continuous) preset amount of air through the nose all night. Perhaps the setting is too high. The APAP machine forces an (A for automatic) varying amount of air depending on what part of sleep you are in and how much you need. Sounds good, right? I already have an APAP machine.
2. Breathe through your nose and the mask; keep your mouth closed. How do you keep your mouth closed when you are sleeping? If I was awake I could pay attention and make sure my mouth was closed and I was always breathing through my nose; but this is sleep time. And, I have a chin strap on my mask and headgear to keep my mouth closed.
3. Sleep with your head inclined. That sounds like a good idea, but if I sleep on my back with my head high, the pain in my back increases. I will try the sleep on an incline idea, but only for short periods of time.
4. Sleep with your head and spine aligned. If you have your head tilted forward or bent, it closes off the airway in your throat area. That makes perfect sense; but again, how do I know where my head is when I’m sleeping? I imagine this is a big issue for me. I do tend to carry my head forward and sleep bent.

It’s a catch-22. Increase the pain in my back and reduce the air in the stomach or forget the APAP and sleep with sleep apnea or use the APAP the best I can and learn to live with air in the stomach. I will continue to experiment. I need to. I am always so exhausted. I really need to sleep.

I am the CEO of my Body!

Another good article about you being your best advocate for health care. Three large health centers – Beth Israel, the Geisinger Health System in Pennsylvania and Seattle’s Harborview Medical Center – are enrolling 115 doctors and up to 25,000 patients in the OpenNotes study where patients will have access to on-line versions of their doctor’s notes. Hooray!

Dr. Tom Delbanco of Harvard and Beth Israel Deaconess Medical Center who heads the study said, “You really have to be a partner with your doctor to do well. It’s your body. It’s your record. It’s your illness. You should have ready access to everything about it.” Hip Hip Hooray! He is so right!

When my primary care physician was converting to on-line medical records, she gave the hard, paper copy of my records to me. Interesting reading. Since then, I’ve always requested copies of records from my various back and related doctors. Some make it easy … some not so much.

I was taken back when a pain clinic doctor wrote in my record … “She appears teary when discussing her back.” Geez. Of course, I am teary; I hurt and I am frustrated (usually it was frustration with him – I don’t go there anymore). But did he have to put ‘teary’ in the records? Makes me sound like a wuss instead of a person with pain trying to get better.

No matter whether I like the records or not, it is important to know what’s in them. How can you fix mistakes, if you don’t know about them? Plus, for me, it is helpful to verify what I think I heard the doctor say.

As Ed Leonard, an engineer in Acton, Mass. says in the article, “The way I view my relationship with the doctor is, I’m the CEO of me and he works for me.” A wonderful comment. I agree wholeheartedly. I wonder how many doctors agree?

To read the entire article, “Reading Your Doc’s Notes May Improve Care", click here.

YUM! from the Husband

In the early days of our relationship, my husband regularly plied me with wonderfully fancy dinners. These days, not so much. Today Mike outdid himself with a delicious dinner of chicken kiev, rice pilaf and green beans. Definitely not the healthiest meal we’ve eaten recently … probably the best-tasting.

The chicken was full of melty, herb-enhanced cheese and covered in a golden brown crust – definitely infused with butter. Lots of butter. The beans were out of the freezer but he jazzed them up with fresh bacon crumbles. No one makes better rice pilaf than Mike. I don’t know how he does it. I try to replicate it, but can’t. YUM!

The dinner was paired with a Fetzer Gewürztraminer. I, unable to enjoy it because of the medications I take, listened to Mike’s yummmmms after every swallow.

I do appreciate my husband and his many talents. This talent is near the top of the list. Although the after picture in the kitchen wasn’t as pretty, it was worth the time it took to clean up.

The Frustration of Pain

I hurt. I hurt a lot. And I am frustrated.

I normally try to put on a happy face figuring what’s the use of complaining … it doesn’t make the pain go away. When people say, “It’s all in your head,” I usually agree. Oh, the pain is real, but the brain controls the pain receptors and attitude can affect pain.

Today, I’m not wearing a happy face. Everyday I am limited in what I can do, but sometimes I try to push the limits. Yesterday, I made a homemade pizza. I chopped some garlic, a small onion and some fresh herbs. Then I made pizza dough and kneaded it for five to ten minutes. Really, about 15 minutes of physical activity (and very light physical activity at that – it’s not like I lifted weights and worked out for a couple hours). OUCH! I knew I was going to pay a price for the delight of a homemade pizza. I didn’t realize how big a price I was going to have to pay.

Last night, in addition to my regular dose of extended release morphine, I took a full dose of immediate release morphine for breakthrough pain. I also took a muscle relaxant according to my prescribed amount. Although not pain-free, it did reduce the burning, throbbing pain enough so I could get to sleep.

I woke up this morning – in pain. And every character typed in this post increases the pain. I guess my only activity today will be eating leftover (delicious) homemade pizza. Oh, the price and frustration of pain.

Safe Prescribing of Opioids Webinar

On Tuesday, I attended a ‘webinar’ on safe prescribing of opioids. I heard about through my involvement with the American Pain Foundation. Although it was targeted for medical professionals and focused a lot on methadone, I found it interesting and helpful. If you don’t know, I take morphine for my on-going chronic pain from the broken back and always want to know more about the stuff and how it may or may not affect me.

The six practices for safe prescribing are:

1. Educate patients and families about the risks. It’s amazing how many doctors don’t do this step. I also think it is vital for the patient to ask questions, research and learn for themselves about the risks. There is always a risk of death from opioids. The education should also include – no sharing of Rx, proper handling (lock them up), proper disposal and always take according to the prescription (don’t take more or more often).
2. Start low, go slow. That’s for the doctor prescribing, but as a patient, I should question if a doctor is starting me at a high dose before anyone knows if it's going to work or have side effects on me.
3. Consider sleep studies for patients on mid to high doses of long-lasting opioids. I’d say anyone taking opioids needs one. Opioids depress respiration and apnea increases with use of extended release opioids. Yes, it’s true! I know.
4. Consider doing an EKG before prescribing methadone.
5. Avoid prescribing benzodiazepines with opioids.
6. Avoid prescribing long-acting opioids for acute pain.

A lot of common sense, but to my surprise (or maybe not to my surprise) these steps are NOT always practiced. Be your own best advocate. Check out www.painsafe.org for more information.

I know I am going to take #3 especially to heart. I am lazy about using my CPAP machine for my sleep apnea, but this doctor made it clear – use it!

Computers are wonderful tools .. till they get a virus

Recently, a visiting family member spent almost every waking hour on our 3^rd computer. Then it happened. The 3^rd computer got infected with worms, viruses, spyware, who knows. It gets worse. Because our computers are all networked together, the infections jumped into my computer and bam, no more working computer.

After several failed attempts at cleaning it myself, I took my computer to EasyTech at Staples. I am a Staples fan; however, this wasn’t my favorite experience. They talked a great story about how they would fix it and more importantly, about customer service and communications. I ended up taking the lead on communications and timing, but now I have my computer back (and the power cord which they requested but forgot to give back, requiring an extra trip to the store to retrieve … and no apology from them).

Time to return to more regular blog posts. The computer works … mostly. It still gets funky at times and is slower and requires regular reboots. Guess it’s time to start thinking about a new computer … and locking down EVERY computer from visitor use.