dahlia in my garden: Rio Fuego in Coleus leaves

Saturday, April 30, 2011

Pain Management: Strive for the right mix of elements

I have a genetic disorder that affects my collagen and connective tissues. My main problems are with pain, muscle spasms, and dislocating / subluxing joints. My pain was so bad when my chronic illness first began that I fell into a deep depression, stopped eating, and eventually became severely anorexic. I was even suicidal and was consequently hospitalized multiple times. It's been a hard battle with lots of therapy and emotional struggle to put my life back together, but finally getting my chronic pain under control was a HUGE part of it. I discovered I could actually have a good life filled with joy and love - perhaps not the life I expected to have, but one very much worth living and sharing.

Here's a look at what I do to help manage my own chronic pain. Perhaps it will provide ideas for you or inspire you to keep pushing forward and fine tune your own pain management...

~* My Pain Management elements *~

~I sleep on an adjustable bed since it is too painful to sleep lying flat. I use a cervical pillow under my neck, a pillow under my knees and an eggcrate foam pad under my heels. I have a bed cradle to hold the covers off of my feet, since the weight of them is too painful on my toes. I could not manage without my adjustable bed and sleep number mattress at all; even though it was expensive it has truly aided my ability to sleep restfully. 

Since I cannot lay down on my back for more than 4 hours without having severe pain and spasms, I have to split up my sleep schedule. I lay down about 8:30 P.M. for a short meditation and sleep until about 10pm. I then get up and do normal evening things with my husband until he goes to sleep. I don't go back to bed until about 4:45 A.M. and then I get up at 8:30 A.M. and go directly to the YMCA pool for my physical therapy so I can loosen up my body to start the day.

It is not easy to maintain such an odd sleeping schedule, but it has made an amazing difference in my daily pain level. My brain might be a little mushy through the day, but splitting my sleep time to limit the amount of hours I am down remarkably lessens my stiffness, spasms, and overall pain.

~I use heat (particularly a heating pad or hot shower, and a hot tub when I’m able to get acess) as a first step when I have a pain flare-up. And of course, I have my Pain Crisis Plan ready when I have a serious pain crisis. You can read about that HERE 

~I use a wrist splint while sleeping and I even have a waterproof one made of neoprene to wear when I am in the pool doing my deep water fitness therapy. 

~We installed a handicapped toilet seat in our home. I was embarrassed at first, but what a difference it makes with my hip pain and instability. Few things are more embarrassing then getting stuck with a dislocated hip in the bathroom!

~I do deep water fitness as my physical therapy at the local YMCA pool seven days a week. This type of exercise got me off of being dependent on a cane. It helps me so much that I notice a difference in my mobility when I miss just one day. My muscles have strengthened and this has cut down a lot on my joints popping out. Being in deep water is very forgiving to the body, preventing any pounding or jarring of the joints but still giving you a full range of motion workout. I often see people doing deep water fitness after joint replacement surgery or when recovering from knee and ankle injuries which prevent their ability to do any other kind of exercise.

“Life is not a final.  It's daily pop quizzes.”  
~Author Unknown

~When I was able, I used to get a therapeutic massage twice a month. This helps to keep the muscles loose and prevent tightness from building up and leading to muscle spasms. It’s also very relaxing for the body and mind and simply feels good!

~Once a month I get needle treatment from my pain specialist, a combination of acupuncture and dry needling (which is based on trigger points). I couldn't live without it - it's fantastic! The National Institutes of Health (NIH) introduced me to the technique and it's been a life-saver.

~I take a mix of over-the-counter and prescription medications to help manage my chronic symptoms and pain. It took a long time of trial and error to settle on just the right combination. Sometimes it’s hard to keep faith when you are continually trying different pills and dealing with side-effects or deep disappointment it fails. But you must forge ahead and not allow yourself to give up. New drugs and treatements are being developed all the time.

With the aid of the National Institutes of Health Pallative Care Clinic, I was introduced to time-release painkillers. I used to fight against the pain and wouldn't take any medication to relieve it until it got so bad nothing would bring it down. Time-release pills take all the self-argument out of it, and helps my body maintain a balanced level of meds in my system, keeping me on an even keel. I still have pain, but I am not stuck in the fetal position in my recliner, isolated and depressed. I can function pretty darn well, and on bad days I can take a little extra pain meds or try one of my other pain management options. 

I could never survive without the time-release painkiller and I recommend them highly for those with chronic pain like ours. Drugs which are in our system for only a few hours, like vicodin, are a poor choice for chronic pain sufferers. They are quick-cycling, in and out of your system rather quickly, and often leave you at a lower level than than before you took it. They also require you to take many pills a day and that’s part of what leads some people to have issues with overuse. Discuss medications with your pain specialist and keep an open mind as you work on finding the perfect combination.

~I have a wheelchair for when I need to stand a lot or when I'm traveling. Though I would prefer to be on my own two feet, I can do and see more and not suffer pain (and the resulting frustration from it) by using the wheelchair. At first, I was very resistant and felt like it made me a ‘cripple’; I was embarrassed, angry, and depressed. Eventually I learned to accept it and recognize the benefit of not pushing my body beyond its limits. Using the wheelchair is like wearing my glasses; it doesn't make me different, it makes me equal. Life is so much easier. I have a manual wheelchair with a special power adapter and a lift on the back of my vehicle so I can be totally independent without a huge, heavy, expensive electric chair. There are so many options for mobility, from canes and walkers to wheelchairs and scooters. Be honest about your needs and work with a physical therapist to find the best fit for your body and lifestyle.

~Consider ergonomics, and not just in your workplace. Recently I had my physical therapist make a home visit to evaluate my favorite recliner (which I spend a lot of time in), my bed with all its accoutrements, and my computer desk area and chair. I found that although I had done well with my bed and computer chair, my recliner and computer set-up were completely wrong for me and likely exacerbating my pain. I am now in the market for just the right recliner chair to support my back and length of body (I am six feet tall and very long-legged) and ...

Tuesday, April 26, 2011

Tuesday-Newsday #9

Today my featured subjects are Pain News, Tips for Caregivers of those in Pain, and Osteoporosis.

A Reminder: National Prescription Drug Take Back Day is this Saturday, April 30th. See the information below.

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING:  My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, meds, etc., in anything I post nor can I guarantee that they are all effective, especially not for everyone. I always include the citation, source, or website so you know where it came from. As is the case with any health info, ALWAYS get your doctor's opinion first!

National Prescription Drug Take Back Day 
Saturday, April 30, 2011 from 10am to 2pm

The purpose of this event is to provide a place to dispose of unwanted and unused prescription drugs safely and responsibly. To find a location in your area where you can bring your meds, go HERE

I talked at length about proper medication disposal in the last installment of my Rx Safety series a few weeks ago. If you missed it or want to read it again, go here: Medication Safety: A Clean Sweep (part three)


New issue of the Pain Community News 
Published by the American Pain Foundation, this newsletter includes articles on: Complementary and Alternative Medicine, a Social Security benefits advocate speaks out, Getting a better night’s sleep, Tips for explaining your pain to others, and much more:



Saturday, April 23, 2011

Call to Action: We must stop ‘Fail First’!

Next week in California, a legistlative hearing will be held on bill AB 369. This bill is VERY important, and it’s not an issue limited to the Golden State. You need to know what’s going on so you can stop it where you live. Please read on, and don’t miss the links at the bottom. You may find your state is listed there...

AB 369 is the ‘Fail First’ bill. We need this bill to pass so it will limit the troubling practice of “fail first” or step therapy - which is when an insurer requires that other therapies must be tried and must fail before people with pain can obtain the medicine originally prescribed by their doctor. Currently, some individuals are required to try up to five different medications or treatments before receiving the medication they were supposed to get in the beginning. This protocol is used as a cost-saving measure for the insurer, but in the long run it can actually increase costs because creating a delay in care can increase resistance to treatment or cause other health complications. 

~* PLEASE SUPPORT CALIFORNIA BILL - AB 369 - vote yes! *~ 

This is not acceptable! Insurers should not be making medical decisions; it should be between you and your physician. Delaying or denying access to treatment steals time and quality of life from patients, could permanently worsen their conditions, could create serious new health crises, and potentially result in premature deaths.

AB 369 is sponsored by the non-profit organization For Grace, which was founded by former ballerina Cynthia Toussaint, who suffers from complex regional pain syndrome. She has suffered under the ‘Fail First’ protocol, which she talked about in an article with ABC News:

Said Toussaint, "Eighteen years ago, my insurance company switched me from Axid, which I was using to treat CRPS in my vocal cords, to a cheaper medication," she recalled. "As a result, I couldn't speak and even experienced pain when whispering. I was forced to 'fail' on two cheaper medications before getting the medication my physician originally prescribed."
Toussaint said that she had a similarly negative experience when her insurance company switched her off her brand name Klonopin -- a pain and anxiety drug -- to a cheaper alternative that left her in pain and experiencing hallucinations.
  "My doctor had to make an emergency request to get me back on my original medication," she said. Still, Toussaint said, her doctor engages in a battle with her insurance company every three months to ensure that the Klonopin she now takes will still be covered.
"If they succeed, I will probably be bedridden again."

If you are a California resident and want to help stop ‘Fail First’, send an email or call your district rep and tell them to *Support AB 369*. Do it now! The hearing for the bill is next week and we need it to pass and become law, so do not hesitate! If you don’t know who your representative is, go here and enter your zip code to find out: Find Your Legislator. I will keep you updated on further movement of the bill in the CA legislature; there is likely to be another time that a Call to Action is needed.

Here is a video of the original For Grace sponsored bill which was introduced in California last year. It had a different number before becoming AB 369 in this legislative session. This video is very powerful, and I hope you’ll take the time to watch it:  Introduction of the Bill 


I found a website dedicating to fighting ‘Fail First’ across the country. There are a lot of patients who want to tell you how it has affected them: Real Life Stories

Information for this blog post came from all stories above and the American Pain Foundation

Have you been affected by ‘Fail First’? Are you fighting against it in your state? Tell about it in the comments below.

Tuesday, April 19, 2011

Tuesday-Newsday #8

Today my featured subjects are Pain Rx: Opioids, Rheumatoid Arthritis, and Dealing with Guilt.

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING:  My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, meds, etc., in anything I post nor can I guarantee that they are all effective, especially not for everyone. I always include the citation, source, or website so you know where it came from. As is the case with any health info, ALWAYS get your doctor's opinion first!

Problems with Opioids Can Be Prevented (American Pain Foundation)
Addiction: Tolerance & Dependence (National Pain Foundation)

The articles in this section, written by other bloggers living with chronic pain/illness, are full with insightful and helpful ideas. Some of the these are written specifically for those with certain illnesses, but they are also useful for those with different chronic conditions.


Saturday, April 16, 2011

Don’t let your passions fade away: Adapt & grow forward (A Lesson from Adaptive Gardening)

For many, chronic pain causes physical limitations and takes away our ability to do certain activities we used to do with ease. Hobbies we formerly enjoyed with no restrictions will often be extremely difficult to continue doing - and of course, we may have to accept that we might never be able to undertake them in exactly the same way we did before.

However, if we think creatively and plan carefully, it is possible to find new or modified ways to keep doing them. It can be an emotional issue when we are forced to accept changes, but if we just let it go we can allow ourselves to find the joy which is within our grasp.

Truly anything is possible if you don’t let yourself be convinced otherwise. I’ve seen the proof: I just read an article about a 10-year-old boy without hands who won a penmanship award and also creates comic strips. Who would think this boy would able to write at all, let alone write and draw with great skill? You can read about him HERE

With a spirit like his, we too can find ways to circumvent our physical restrictions and adapt.

Obviously, gardening is a great passion of mine and I use it often in this blog as a metaphor for living with chronic pain. I am not trying to convert all of you into gardeners though I think you would certainly benefit (and with the price of food these days it can certainly help a household budget). However, I want to share the ideas and methods I myself use so you can see that with a little research and ingenuity, you do not have to give up your passions, either.

So let’s talk about Adaptive Gardening...

Gardening can be a very physical hobby depending on what you grow and how involved you get. It’s a great way to get a little physical therapy, though you should always consult your medical team with regard to any physical activity. Even if you are in a wheelchair, are blind, or no matter what your limitations are, there are ways you too can be a gardener!

Here I am enjoying the Ranunculus on my deck.

Gardening does not always mean spending hours in the hot sun digging holes in the ground. You can go big or keep it small. You might choose to grow plants exclusively for food or you can use flowers like paint and create a landscape of blended colors and shapes. 

Consider these: 

-Cooking herbs and some types of plants & flowers can be grown indoors in a deep window sill, on a table top, or even in a hanging pot.

-Pots or planter boxes outdoors can be set on a table or attached to a deck railing to raise flowers or vegetables to a height that allows you to tend them while standing or sitting in a chair.

-Raised beds are a great choice for those who cannot easily bend or are wheelchair bound but still want a large gardening area. Find out more about them here: Types of Raised Beds

-Another really neat choice is a vertical garden, which is an attractive way to bring plants closer to a seated or standing-only gardener. It’s a very unique look and makes a great focal point. You can read more here: Vertical Beds (Walls, Trellises and Arbors)


*Have a Plan Before You Start
It’s easy to get caught up with the ‘gardening bug’ and just attack the first thing you see and keep on going. If it’s time to plant seeds, then focus on that job and make a note of what needs to be done next time. If your flowers desperately need fertilizing and weeding, start there. Take into account which jobs are the biggest priority at the moment.

*Pace Yourself
It doesn’t matter whether you are gardening, doing your housecleaning, or cooking... do not forget to pace yourself! Instead of pushing yourself to weed the whole garden, think of it in sections and stop to rest often or divide the project over several days. If you have a hard time making yourself stop once you get started, use a timer so you can’t say you didn’t know how much time had passed!

*Don’t Do One Activity For Too Long
Give your body a little break by shifting positions, changing hands, or taking a moment to stretch a little every so often. It helps to relieve strain which builds up when we get into repetitive actions.

*Use the Right Tools for the Right Job
Don’t try to use a hoe when you need a shovel. There are lots of ergonomic tools manufactured especially for people like us. I have a pair of ergonomic clippers that I couldn’t live without. They give me the extra cutting pressure I need with my weak hands. I also have a reversable bench that I can sit on or turn over and have a kneeler with handles to push up against. Most garden supply companies offer such items.

*Lighten the Load Where You Can
If you have a good-sized garden, why use to hose for watering and force yourself to stand for a long time? You can install a drip system with a timer; or find someone who can do it for you. Don’t leave your tools in the garage and make multiple trips back and forth to get what you need and wear yourself out. Instead, use a garden wagon to keep everything you need with you. Consider the projects on your to-do list and find a different technique or product to help ease the strain on your body.

*Have Fun!
Paint a few pots with a bright colors or silly patterns and set them around. Add some eccentric garden art. Put something unexpected in your garden that makes you smile when you see it. Choose a theme for certain sections of garden, like jungle or desert or seaside, and add items that enhance the theme.

For more ideas and tips on how to manage your physical issues while gardening, check out these links:

-If you suffer from asthma, it doesn’t mean that you can’t have a garden. Go here: Asthma Friendly Gardens


On a trip to Oregon I discovered a truly remarkable garden. Unfortunately, I didn’t keep the information about it where it is located and the exact name. But what a special place! It was a Sense Garden.

It was walled on all sides and had meandering paths that made it impossible to see ahead, which gave it a sense of mystery and anticipation. Everything was chosen to appeal to all of the human senses, making it the perfect type of garden for those with disabilities.

The pathway was wide and paved and the garden beds were raised so that anyone in a wheelchair could go through and get close to the plants. 

For the hearing impaired/deaf, many plants and flowers were ...