Bee Venom and Gluten Cutter:Updates

A few weeks ago, I got stung six times by yellowjackets. The rest of that day it felt like they continued to sting me. The next day was less painful, but then the itching began. It was like five mosquito's intensity, in patches from about one inch to about two inches in diameter. The itching took most of a week before it began to subside, and though they no longer itch, the patches are still visible.
The week it happened, I wrote about the use of bee venom as a therapy for inflammation, pain, and other issues. At the time, my 30-ish year old hip bursitis and long-standing pain along my IT band in my left leg were gone. On the seventh day, God rested (oh, wait, wrong story). On the seventh day, there were twinges in my bursa, and by the twelfth day, my leg was back to its usual self.
That was wonderful week without one of my main sources of ongoing pain. On the other hand, The itching caused its own form of discomfort. I am still unsure if I would be willing to get bee venom therapy, but I am now thinking of looking into it, whether it is available near home, how much it costs, does insurance cover it, etc. I would not get it on my arms, where the itching was the worst, maybe on my back, where it wasn't as bad. Maybe. Just maybe.
On another topic, I discovered a new product a month ago, Gluten Cutter. I tried it, and it worked, so I used it to pigged out on gluten on a vacation. (Wrote about it here.)  Since being home, I eat less gluten, so I am using it less. Sometimes now, I get a stomach ache/acid reflux either that day or the next, symptoms I used to get from gluten. I have been experimenting with taking two Gluten Cutter capsules, and also with trying other products on the market. I am also limiting myself to 1-2 gluten items per week. Apparently, I can eat some gluten, if I am careful, I just haven't found the magic threshold yet. If you do try Gluten Cutter or another product, leave a comment. I'd like to know how it works for you.      

Don't Wait Until...

I had an epiphany last week. I have been doing exactly what I tell my patients and readers not to do. I think  it has been a 'perfect storm' scenario that started it. We went to California for a week, across 3 time zones, which threw my internal clock off. I lost my job, daylight savings time started, and this headache returned.  For the past 5-6 weeks, I have had an almost constant headache, and greater fatigue than I usually have had. I have been able to continue to take care of most of my business, job hunting, writing this blog, etc, but my use of time has been less than efficient. I procrastinate, playing games on my phone, and looking things up on my computer. I am frustrated, unfocused. I am waiting until I feel better, until the fatigue goes away, until things get back to normal, and I can get on with my life.
WHAT??!!?? Wait a minute. This IS my life. This IS my normal (or a variant of it). If I am waiting to get back to that other normal, the one I used to have way back when, I am waiting in vain. I know this. I warn other people about this, and yet, I fell into it myself. Don't put off living your life, waiting until you feel better, or a particular event occurs. It may not occur, or even if it does, you may miss out on some wonderful opportunities while you were waiting. Live your life now, the best you can, with what you've got.
For the past 25 years, I have consistently had various types and levels of pain in various body parts. I describe it as being a member of the 'Pain of the Month' Club.I never know where I will hurt next, but when it shows up, it likes to stay for a month or two or ten. The fatigue I have only had for about ten years, at varying levels. The fact that this current pain is in my head compounds the cognitive problems that the fatigue causes, but it isn't anything new or unusual, just a variant.
Okay, so I realize that this is my life, no use waiting for it to get better (it might, or it might not, it might get worse). Now what? I need to get motivated, and to resist procrastinating. So easy to say, not so easy to do.
Having a routine and a schedule make the biggest difference. They both get me up and moving. One 'rule' I am instituting is using the morning time for me: exercise, grocery shopping, etc, and the afternoons for business: writing, job related pursuits, art, etc. I plan to not only have an ongoing to-do list, but pick out certain items from the list and what time I will do them. I will get up off of the couch more often, because sitting makes me sleepy, and sleepy plus fatigue makes me feel worse. I can set small goals for each day.
I will be am an active participant in my life. Now, if you will excuse me, I have some tasks to take care of.    

Happiness Project

What does it take to make you happy? Many people spend their whole lives, all their time and energy, pursuing happiness, and never achieving it. They think, "If only X would happen, then I would be happy." When (if) X happens, they are happy for a short time, then they realize that it wasn't X they were missing, but something else, which becomes their next "If only...".
I agree with Rabbi H. Schachtel that "Happiness is not having what you want, but wanting what you have."  Acquiring things may give you a momentary spurt of pleasure, but it can't substitute for pure, in-the-soul happiness. So if real happiness comes from wanting what you have, what do you do if life has given you too much that you don't want- pain, illness, fatigue, poverty, conflict, etc.
A very important idea is to remember that your illness (or whatever you have) is only a part of who you are. Give your illness the attention it requires to cope with it effectively, and no more. i.e., take your meds, go to the doctor, etc., but don't dwell on your symptoms. If you need to keep a pain log, or log of other symptoms, do so only for as long as is needed to get the information you are seeking, then stop keeping the log. This kind of log tends to maintain focus on the negative aspects. Remember that it is easier to keep pain under control than it is to get it back under control. It is better to take pain meds consistently than to consistently be wondering if you should take them. Keep an ongoing Gratitude Journal- when you wake up, when you go to bed, or whatever time of day would be most beneficial to you, write down 5 specific things for which you are grateful. Or, keep the Journal nearby, and use it throughout the day. Counter each negative thought with a positive: I can't walk around the block anymore, but I can walk to the nearby store and back. Be active in your life, your family and your community. Treat yourself and others with kindness and acceptance.
Check out www.happiness-project.com for more ideas. I first started reading Gretchen Rubin's monthly column in Good Housekeeping magazine, then explored her website. Now I subscribe to her daily blog, and her daily happiness quotation. She has written several books, two of which are about happiness. The first one, The Happiness Project, was about her year exploring happiness, and as her blog subtitle states, her "Experiments in  the Practice of Every Day Life". The second book, Happier at Home is about making your home a happier place to be. The Happiness Project has become a movement, with groups all over the world dedicated to the exploration and pursuit of happiness. Browse through the Tips and Quizzes tab, and the Your Happiness Project tab for lots of 'how-to's.              

Hike!

The city I live in has what they call a fall hiking spree. Each year they designate 12 particular trails from throughout the Metropark system. Anyone who hikes 8 of them can get a hiking stick, or if you already have a hiking stick, you get a small metal shield to attach to it. I love seeing the old-timers hiking along with a stick covered in shields from all the years they completed the spree. For the second year, a group from our Temple has been doing the hiking spree together. It really is more fun to exercise with a group, and it is harder to back out when there are other people expecting you to be there.
One nice thing about hiking in the fall is the colorful leaves everywhere. One problem with hiking in the fall is that trails are covered with leaves, which can be slippery. One nice thing about hiking in the fall is that it is cooler, so I don't get as sweaty as I do in the summer. One problem with hiking in the fall is that in this part of the world, it gets chilly, not yet winter, but down into the 40's (Fahrenheit). The trick of hiking in this weather is layered clothing, so you can add or subtract as needed. Overall, I think the nice things outweigh the problems.
The trails chosen each year are spread all around the area, so it requires you to go to parks you would not normally go to. I have discovered some very nice places doing these hikes. The Metroparks system does a good job of balancing the difficulty of the hikes, with lengths from 1 mile up to about 3, and difficulty ratings ranging from 1 to 3, with 1 being mostly flat, and 3 being the most rocky or hilly. People doing the spree can chose their hikes based on location, on difficulty, or on length.
I generally enjoy hiking. My left leg starts out painful, but calms down after 5-10 minutes. It starts to get achy again at about 30 minutes. I do best with hilly or rocky terrain, which allows my leg to stretch and use different muscles. I also like dirt/ leaves better than paved, because the impact is softer. My brother's girlfriend, by contrast, has had knee issues for many years, and does best on smooth, paved walks so her knee doesn't twist. Last week's trail was a bit of a problem for me, because it was along a hillside, so the trail was consistently sloped to one side. I did great on the way out, but the way back along the same trail put pressure on the side of my foot that hurts.
I have to admit that I am a bit worried about the trail we will be doing this week. It is along the Towpath, which way back in the days of the canals, was where the mules walked, pulling the barges along in the canal. The Towpath fascinates me, with remnants of the canal still visible here and there. I love seeing history. The problem is that this trail is flat, and hard surface. It is 2.4 miles, the longest we have done this year, and a level 1 difficulty. In years past, that would have presented no problem (well, less of a problem). On a flat, hard surface, my leg muscles tighten up, and hurt. In the past, once I stretched and sat for awhile, the achiness lifted. Now not only does the achiness last longer, but it also makes me more fatigued.
I plan to stop and stretch often, and if I feel like I need to, walk a shorter distance. On a loop trail that is hard to do, but on a trail like this where you hike back along the same trail, I can do that. Walking, or in this case, hiking, is one of the most accessible forms of exercise, and in every health magazine these days there are articles about how good it is for you. Get out of your house and walk. If there is a store nearby, and you only need a few things, walk. Breathe in the fresh air. Push yourself, but know your limits. Know your body and how it reacts to walking on different surfaces and in different conditions. Walk around the block, in a mall, in a gym, even up and down your hall. Hike in a park, look for trails that are the right length and difficulty for you. Wear layers, bring water, a friend, and, if you are like me, a snack. I like almonds.

A New Pain Resource

I got a copy of a new magazine in the mail last week, unsolicited. It was addressed to 'Sheryl Aronson, Occupational Therapist'. They likely bought mailing lists from professional organizations, and sent the magazines out, hoping to get therapists to put it out in their waiting rooms for patients to read (smart advertising- I plan to do just that, as soon as I finish reading it). There is a page of tear-out slips with the magazine's name and website, so patients can tear one off and take it home to look up the site.
The magazine is called Pain Resource, and is actually not a new magazine, but was formerly known as Pain Solutions. I do not know why they changed their name, but according to Lorie A. Parch, Editor-in-Chief, it is 'new and improved'. I don't recall ever seeing Pain Solutions, but I do like what I see in the magazine I received. It has interesting, informative articles, on topics including why people don't get adequate pain treatment, breaking the pain/depression cycle, food and inflammation, and how spirituality can help with coping. There are short tidbits of info, as well as longer articles and personal anecdotes.
Besides the paper and ink magazine, there is an online community at www.painresource.com. There you will find more articles, personal stories, ask the expert, forums, blogs and resources such as how to write a pain journal- enough to keep you busy for as long as you want. This website is fairly new, and not all of the features have much in them yet, but I think that will change as more people find this site.
The magazine is published 4 times a year, I don't know the cost. Joining the online community just takes a moment to register, and is free. Give it a try. The more people who join, the more useful and interesting it will be for all of us.

 

The Power of Words

I love my cat, and like many people, I talk and act as if she were my child. I am delighted when I say something to or about her, or mention her name, and she responds with 'Meow." My husband and I will often put words in her mouth, making assumptions about what she is thinking or saying. We can guess, based on her behavior, but there is no way of knowing, definitively, what is on her mind.
People, on the other hand, have words. Words are such an awesome gift. With them, we can let others know exactly what we want, need, think, feel, believe. Words form bridges between people. Along with this awesome gift comes awesome power.
Words build relationships, or tear them down. Words heal, or words harm. Words soothe, or words scare. Words bring comfort, or words cause discomfort. Words can be taken back, but scars remain. Words can be denied, but doubt remains. Words can be altered, but their consequences have already been set in motion.
Think about the awesome gift and the awesome power you have in your mouth and your mind. How do you want to use your words? What message do you want to convey? Before you put any words out into the world in speech or in writing, think about what effect they will have. Is that an effect you want to be known for?
Sometimes in pain, physical or emotional, we say things that could hurt others. Sometimes, we really need to let it out. Find ways to let it out that will not harm your relationships. Scream into a pillow, or write in a journal. But what if that isn't enough? If you have an understanding relationship with someone, try this: When you are both calm, talk about your need to vent when hurting. Set up a signal you can use, such as holding both fists up in the air, to let that person know it is the pain talking, and you do not mean what you are saying. Make sure they understand that you don't want answers or solutions, you only want them to listen.
Next time you need to vent, try it. Hold your fists up (or whatever your signal is) and let loose. Yell, cry, get it out, aiming your rant at the pain, not at the other person. Later, when you are calm, thank them for letting you let off steam to them. Talk about the experience, to make sure you are both okay. This can be draining for both parties.
Words are power. Use them to ask for what you need and want, to express your thoughts and feelings, and to build strong, healthy relationships. A lesson from my cat: Meow respectfully, yowl when you must, and purr whenever you can.
    

Hope

Every morning for a couple of months now, I have had skin pain over much of my body that is like that hypersensitive, irritated, irritable feeling of freshly scraped skin. I am constantly aware of all my skin, making it hard to concentrate on work or other things. I have found a way to get it to calm down by about 10:30 am, but I know it will be back. I am generally a pretty positive person, but pain has a way of wearing a person down, and my positive has had streaks of negative running through it lately.
Some days are worse than others, and yesterday was one of the worst. I was lying in a hammock, feeling sorry for myself, when I started to think about the word 'hope'. Dictionary.com defines 'hope' as:the feeling that what is wanted can be had or that events will turn out for the best. I do have hope, but I sometimes have to remind myself it is there.  
Last weekend we went to an arts and music festival in Shaker Heights, OH. There I met a delightful woman named Deborah Brodie, who had a booth for her art, Dor L'Dor (Hebrew for generation to generation). She takes Hebrew words and makes the letters into a design. I had fun looking at each one, reading the word and figuring out the symbolism in the design. She makes each design into a variety of jewelry (necklaces, pins, earrings, etc.), as well as other items. How is this related to 'hope'? I bought a necklace from her, in the shape of a Star of David, with the word 'Tikvah", Hebrew for 'hope'. 
I chose this design because it was the one I liked best, the one that talked to me. It wasn't until yesterday that I really started to think about what this necklace means to me. I have hope in my heart (a couple of inches away, actually) that I can handle the pain, and I will be okay. 
Hope is a powerful word. To have hope means to have faith that the future will turn out okay. To have hope means that no matter how difficult today is, I know that I can get through it. To have hope means that when I am hurting and it feels like it will never get better, I know that it will. Hope can be the difference between survival and demise, and between merely existing and really living. Hope can give you the push you need to take care of yourself. Hope gives you a reason to get up in the morning, and a reason to smile as you go to bed at night. Hope makes life worth living, and each day a gift.  

Sing to the Heart

Yesterday was a rough day for me. Work was a bear (too much work, not enough staff, same old story...). My plantar fasciitis continues to bother me, despite 2 injections into my heel on Monday. My knee and hip, apparently jealous of my foot, continue to clamor for attention. For about a month now, until around 10:30 am every morning, my skin has sort of an irritable hypersensitive feeling, like a fresh scrape: a gift of my Fibromyalgia, I believe. On top of that, my stomach was in turmoil from a Cipro I was given to ward off infection after some medical testing. (Thank you for allowing me to complain. I'm done now.) I have been easily discouraged lately, with all this going on at once. Last night, I was given a gift that lifted my spirits, and sang directly to my heart. I am involved with a Jewish women's group that meets each month to celebrate Rosh Hodesh, the beginning of the Hebrew month. Last night was our final session of the year. As a special treat, we had a Jewish women's a cappella group from Pittsburgh, PA, Kol Shira. When I am down, one thing I know I can count on to bring me up is music, especially music I can sing along with, my first choice being Jewish music. This group was perfect, with both English and Hebrew, and the majority of songs familiar to me, along with some new ones to delight me. I sat on the floor, at times singing along, other times, I closed my eyes and allowed the music to wash over me, to flow around me and through me. One of the singers told us that she is a music therapist. I was in need of healing, and this music was my healer, my therapy.  I bought their CD, Speak to the Heart, because their music spoke to mine. Two songs they sang last night especially spoke to me, and both are on their CD. (Note: the links are for other groups singing these songs.) The first is called Hine Ba Hashalom, which means Here Comes the Peace. It was a popular Israeli pop song a few years back, is upbeat, with catchy lyrics and is fun to sing. The other song that hooked me was a song called Dig Down Deep. Here are part of the lyrics: 'I'm digging way down down to the bottom of my soul; I'm digging way down way down deep. I'm digging way down down to the bottom of my soul; There's clear water running through me....' My Sjogren's Syndrome body forgot about that water running through me. It sure was refreshing to find it again. Every time I have an experience like tonight, it hits me again just how powerful music can be. Music has been used for millennia for worship, communication and healing. Whether it is fast or slow, loud or soft, smooth or choppy, reverent or irreverent, vocal, instrumental, all or none of the above, there are few people who have never been touched by music. People with chronic pain and illness know all too well what discourages us. What re-courages you? What gets to the bottom of your soul and brings you peace? 

Distraction CAN Reduce Pain

Here is some interesting research about how distracting activity not only takes our conscious focus away from our pain, but actually distracts our brain from focusing on the pain, too. My comment, following the post, asks if the results would be the same for people with actual pain syndromes (the study was done on 'normal' subjects, with an artificially induced, more controllable pain stimulus).  The How To Cope With Pain blog is one of the blogs I follow, and have referenced here on other occasions.

Work Smarter, Not Harder

Energy Conservation and Work Simplification are techniques to help save energy and avoid fatigue/excess pain when performing activities. Using principles of energy conservation and work simplification can increase your level of activity without increasing fatigue. Energy conservation is any technique that preserves the body's energy. Work simplification is any technique that decreases the amount of work that needs to be done, making it more efficient. Energy conservation and work simplification require assessing an individual's daily activities and demands and creating solutions using basic principles of:

1. Prioritizing
2. Planning
3. Pacing
4. Posture
   

Ask yourself: 1) Does the task need to be done? 2) Does it need to be done by me? 3) Does it need to be done now? 4) Are there ways I can simplify the task?

1. Plan your work day to alternate light and heavy tasks and pace yourself
2. Develop a routine that allows you to use your time effectively and efficiently
3. Make lists, organize tasks, eliminate and/or combine tasks/steps when possible, group activities or errands
4. Determine the balance of rest and activity that works best for your body
5. Take short (5-10 min), breaks intermittently rather than pushing to finish a task in one session
6. Stop working before you get too tired or sore
7. Manage time to avoid need for rushing, which increases tension
8. Find shortcuts- use prepackaged foods, don't peel potatoes, buy clothes that don't need ironing (or think like me- God wouldn't have put wrinkles there if they weren't supposed to be there), shop online, buy in bulk, make casseroles and one-pot meals, fully make one corner of the bed before moving to the next corner, reuse dishes from the dish drainer or dishwasher instead of putting them away, store a set of cleaning supplies on each floor of a multi-floor house, use no-scrub cleaners and automatic toilet bowl cleaner, use an automatic can opener, etc.
9. Use long handled reacher, duster, dustpan and other tools to decrease need for stooping and bending
10. Sit when possible, use a high stool to sit on for tasks such as ironing or food prep; If you have to stand, raise one foot on a low stool or inside an open cabinet, alternating feet frequently, and/or have a cushioned floor mat to stand on
11. Use a utility cart to transport items and slide objects along the countertop rather than carrying them
12. Use electric appliances, lightweight utensils and tools, use the right tool for the job.
13. Set work up to work with gravity, not against.
14. Adjust the work height for maximum comfort- usually shoulders relaxed, elbows at 90 degrees- use an adjustable ironing board as a work surface or put a board over an open drawer, raise dishpan by putting a rack under it
15. Arrange frequently used tools, appliances and supplies close to where they are used and easily reached, Keep small appliances on the counter, ready to use
16. Set supplies up in a semicircle, within easy reach
17. Eliminate countertop/desktop clutter
18. Use both hands
19. Support your arms- using them unsupported causes strain on your arms, neck and back
20. Decrease need to hold objects by propping them up, using rubber mats or suction cups on a table, or a pillow on your lap to hold a book
21. Use other body parts to compensate, such as a foot pedal to open a trash can instead of bending
22. Reduce extra motions- make a bed or set a table in one trip around
23. If lifting is necessary, lift objects using your leg muscles, not your back. Bend your knees and get as close to the object as possible
24. Push heavy objects rather than lifting, use your body weight, carry objects close to your body
25. Ask for help

Principles of Joint Protection

Maintain muscle strength and joint range of motion

Practice good posture and body mechanics (to reduce muscle fatigue)

Avoid positions of deformity and deforming stresses (ie., don't get yourself into positions that are uncomfortable or put strain on your body)

Use each joint in its most stable anatomical and functional plane

Use the strongest joints available for the activity- lift with your legs, not your back, hold objects with your palms, not your fingers

Avoid using muscles or holding joints in one position for any undue length of time- stretch every 10-15 minutes

Never begin an activity that cannot be stopped immediately if it proves to be too taxing

Pain that lasts more than an hour after an activity may indicate that the activity was too stressful.

Respect pain

Just Breathe

The Faith Hill song, "Breathe" came to mind this morning.  I have actually thought of it several times lately, and will several times more, for a particular reason: it is a good way to cope with a stressful or painful situation.  (Note- the song is actually about love, it is only the one line 'just breathe' that I connect with in this context.)   I seem to go through periods where I am having many health-related procedures done, this is one of those periods.  Within the past week, I have had surgery on my hand, which included an IV, and resulted in 3 stitches; 2 blood draws; and removal of a spot on my leg for biopsy, that started with a Lidocaine injection, and ended with 2 stitches.  This afternoon, I get to have a pelvic exam and Pap smear. (Guys- imagine someone putting a cold metal thing into your penis, and spreading it open so they can look around for any problems...)  I have several other fun activities like these coming up in the near future.
So, has anyone figured out what this list of activities has to do with that song I mentioned?  "Just breathe" is what I tell myself whenever one of these unpleasant procedures begins.  I focus on drawing in a breath and then letting it out, sometimes counting, sometimes not.  The main thing is to focus on the breathing.  This does several things for me.  First, it distracts me and focuses my mind somewhere else.  It makes sure that I am getting adequate oxygen at a time when I might have held my breath instead.  And it also keeps me calm, a result of the distraction, the slow, deep, rhythmic breathing, and the mindfulness manner of breathing.

Not a Hand to Stand On

Usually, when we have an injury, we look for ways to adapt our actions in order to continue to take care of business. If the injury is one arm, we have another arm that can usually be substituted, though often more clumsily. I am in a situation where both arms/hands have problems. My right arm (my dominant one) has had a recent recurrence of a pain that surrounds my shoulder blade on that side when I use that hand unsupported away from my body.

The instinct would be to decrease use of that arm, and to use it cautiously. This would require increased use of my left hand, and therein lies the problem. I have developed trigger thumb in my left hand, for which I will be having surgery on January 12. The tendon at the base of my thumb has a knot in it, which causes my thumb to snap whenever I try to bend or straighten it. It is painful, especially if my hand has been resting. Opening jars and grasping large items is out of the question.

So what to do? I have been planning ahead, doing ahead of time some tasks that I know are coming up that require 2 hands. I have also been looking at simple adaptations that make two handed tasks possible for a one handed person. Items such as shampoo, soap and hand lotion in pump bottles are an example. Pull on clothing, without buttons or zippers are easier to get on and off, such as sweats and t-shirts. Looser clothing is also easier. There are slip-on shoes, or shoe laces that are elastic. My favorite kind are coiled. You lace them into your shoes instead of regular laces, and they make your shoes into slip-ons that don't require tying.

This topic is complex, and too big for one blog post. Here are two good references with more info on how to do things one handed:  Wiley Library; Stroke.org.au.

So back to the issue of how to do things when both sides have problems.  This takes some individual assessment and problem solving. I have issues with my left hand and my right upper back.  As long as I don't have to grip anything in my left hand, I can use my left arm to hold or carry things.  I can use my right hand, as long as I don't have to do anything sustained with my arm unsupported.  Most tasks can be done with some combination of these limitations.  For tasks that can't be done, there are always the assertive skills of asking for help or delegating. Some tasks can be postponed or just skipped.  My three questions for determining this are: 1.  Does it have to be done?  2. Does it have to be done by me?  3.  Does it have to be done now? 

Most activities can be resolved using the ideas above.  I am still working on how I will wash my hair without getting my left hand wet or keeping my right hand raised above my head.  

Art from Pain

Art and pain- a connection close to my heart (actually, my heart is fine- it is other body parts that are involved).  I  found a website I would like to tell you about.  It is the site of the American Headache Society, and a patient-health professional offshoot, the American Headache Society Committee on Headache Education, with the appropriate acronym ACHE.  The site has a good variety of info and links related to chronic headaches (something I can, unfortunately, relate to).  They have self help tools, forums, education, and, among other resources, an art gallery.
This art gallery has a collection of art created by people with chronic headaches, depicting how they perceive or experience their headache.  When someone says "I have a headache", the reaction often is "So, I get headaches, too."  Having a chronic headache, especially of the strength of a migraine, is not just a headache.  Just like any chronic pain, it can have a big impact on the individual, and pervades all areas of life.  It is hard for someone who has not experienced it to perceive what it is like.  The artworks, most of which have a head somewhere in the depiction, can tell more than words.  Seeing a picture of a head being squeezed in a vise, or with a jagged flash of lightening stabbing the eye says more than "I have a headache".  Van Gogh's painting The Scream would fit well in this collection.
There are other sites that have pain related artwork.  Two are: Pain Exhibit, which features art by artists with different types of chronic pain, and  Pain-Topics.org which has info about chronic pain as well as a gallery of art created by artists about their pain. The Pain Exhibit site gives artist statements, and divides the art into different topics, such as Pain Portraits, and But you Look So Normal.  The Pain Topics site gives explanations of the art.  Much of the art in the Pain Topics gallery come from the Pain Exhibit, but are presented in a different way.  Both these sites are interesting to explore. 
Looking at each piece of art tells a story about the person who created it.  To tell your own story, get paper, canvas or clay, or any other medium you would like to work with.  Sit quietly with your medium at hand.  Close your eyes, and focus on your pain.  What shape is it? What color(s) does it project?  What is it trying to tell you?  If an image comes to mind, create it.  If not, just start to experiment with your chosen medium.  Often, an image will create itself.  Don't try to direct your art, just let it happen.  Don't concern yourself with trying to make it look pretty, or perfect, or exact.
You don't have to be an artist.   In fact, sometimes artists have a more difficult time with this.  They are too focused on quality and their reputation as an artist to allow the art to be genuine and natural.
You now have a new way to express yourself.  Experiment with it, play with it.  Learn from it.  Let your pain flow into it, and hopefully, your art will ease your pain.

My Health Trumps Fashion

I have never been interested in the latest fashions, and never bought into the 'look younger' hype. That has made it fairly easy for me to adapt my style based on needs of my body, rather than current trends. I never felt comfortable in high heels, the highest I ever wore was probably 1 inch, and it had to be more of a wedge than a spike. Now my shoes are all flats, with plenty of toe room, and if there isn't enough arch support, I put more in.

I used to wear a little makeup, but not consistently, and I never got into a routine with it. These days I have enough things that I have to do to keep all my orifices and surfaces clean, moist and healthy. I can't imagine having to put on makeup in the morning and then cleaning it off in the evening, as well as making sure it doesn't get smudged when I put in eye drops. My mom used to tell me that men would be more interested in me if I dressed nicer and wore makeup. I told her that if that is what they were looking at, then they weren't looking at me. I did find a wonderful man who likes me just the way I am. I didn't even wear makeup for my own wedding 14 ½ years ago.
This past year I have had problems with skin pain, It started with hypersensitivity on the left side of my torso, and has since expanded to include both arms and both thighs. I don't have it all the time, and not predictably, though I am paying attention to it to try to figure out what triggers it. I have seldom worn a regular bra for the past 7 months. I wear a sports bra sometimes, but most often I wear one of those workout tops with a built in bra shelf, or just a tank top under my shirt.
The most recent in my fashion bucking trend is that I have decided not to shave my legs. I usually go through the winter without shaving, because no one sees my legs then anyway. Then I start to shave again in the late spring, when I start to wear capris, shorts or skirts. This year I have had severe pain in my left hip and down my thigh. The worst pain comes from standing or staying in any static position. It hurts just to think about shaving my legs. I kept putting it off later and later into the season, wearing shorts and skirts that exposed my fur, and not really caring who noticed. The ultimate challenge came a few weeks ago when I went to a wedding in a nice dress, with hairy legs (and flats). Guess what happened? NOTHING. No one commented, or made ugly faces at me, I was not kicked out or chastised or ridiculed.
Now that everyone is thoroughly disgusted and sickened by what I must look like, let me tell you why I am writing this. It is to show you that you don't have to conform to what other people expect. Whether it be because you want to make your own fashion statement, or because you are like me and your health is a higher priority than your vanity, make your own rules (or lack thereof). You are beautiful just the way you are.

Permission not to

Good intentions don't always make it to the finish line.  I was going to write a post over the weekend, but was busy with my oldest son and his girlfriend in town visiting, and with the wedding and related festivities of a good friend of his, all while trying to cope with a bad flare of fibro skin pain.  I was going to write a post yesterday, but ran out of time and energy.  I was going to write a post today, but fatigue had taken hold of me by the time I got home from the grocery store after seeing my rheumatologist after working half a day.  So here I am, not writing a post.  Wait a minute.  Isn't this a post?  Am I not writing it?  Apparently, I am writing a post about not writing a post.
Long story short, I have been working alot at the hospital, and had a very busy and intense weekend, and I am beat.  I don't have the brain capacity to write anything intelligent.  So why am I writing this?  Because I try to write at least twice a week, though it doesn't always happen.  I don't want my readers to stop by and go away empty handed.  If that happens too often, they won't stop by anymore.
The main reason I am writing this is that I know how hard it is to give yourself permission to drop other obligations in order to take care of your own needs. If you are reading this, there is a good likelihood that you have some kind of chronic something or other that requires you to be extra attentive to your needs. If you don't look out for your own needs, who will?  And if you don't give yourself permission, who will?  I am going to follow my own advice, and give myself permission to take care of my own needs.  They say that imitation is the sincerest form of flattery.  Please flatter me sincerely, and give yourself permission to take care of your own needs.

Sometimes its Worth the Pain

I get monthly e-mail updates and quarterly journals from the Fibromyalgia Network.  They have a very informative website, as well as good articles in the journal and updates.  One of the articles in the update I just got was about a survey that was done with people with fibromyalgia.It was performed by Lillemor Hallberg, Ph.D., at Halmstad University in Sweden.   It was synthesized into 6 strategies for living a balanced life with fibro. The 6 strategies are:
1. Distract yourself from pain. 
2. Participate in activities that alleviate your pain.
3. Avoid unnecessary stress.
4. Use good days wisely.
5. Plan activities in advance.
6. Too much activity is sometimes worth it.
I want to comment on this last one.  Most strategies we hear about are strategies for decreasing the symptoms we don't like.  This last strategy is different.  This one tells us that while decreasing symptoms is good, you have to live your life, even if it means increasing symptoms sometimes. If you always err on the side of caution and avoid anything that causes pain or fatigue, you are missing out on life.  
Sometimes a family gathering or a social event are worth the price of a few days pain afterward.  The trick is knowing how much and how often. Each of us is different, there is no magic formula. It takes thought, and perhaps some trial and error.  What is important to you?  How much is this event/activity worth to you?  Project into the future to the day after the event.  You are lying in bed, groaning.  Are you thinking, "Where was my brain?  I should not have done that."  Or are you thinking, "Man, do I hurt.  But it sure was great seeing everybody."  If you skipped the event, would you be regretting it the next day?  
Asking yourself these kinds of questions will help you identify when it is worth it to push yourself past your usual limits, and when it is not worth it. You be the judge.  It is your life, live it.  (Yeah, I know.  Easier said than done.  ; )
The article ends with this:  
The only common strategy the researchers did not endorse was to ignore pain. “By ignoring pain, the women’s fast pace and hyperactivity is maintained,” says Hallberg. “This will probably result in increased pain and fatigue and increase the imbalance.” While the researchers felt the distraction and activities strategies were key and could be learned, patients felt that reducing stress might have the best impact.   

I Understand Now Why People Cut Themselves

I was supposed to go to work today.  I got up and got ready with every intention of going.  I even went to my PT appointment, which was at 8 AM, so I could get to work sort of on time.  I left PT, turned my left turn signal on, then switched to my right turn signal and came back home.  I work PRN as an occupational therapist on the inpatient psych units of a general hospital. PRN means 'as needed': I am the substitute for whenever anyone else is off.  It comes out to between 1/3 and 1/2 time, which is usually just right for me.  

It is a problem, though, when I am scheduled to work 4 days in a row, like this week (my husband doesn't work Mondays, so neither do I).  By the end of the work day yesterday, I was fatigued, but I went and did my grocery shopping, because I don't have any other time I can do it.  Besides the fatigue, I had a very annoying pain that I just started getting about a month ago.  It is in my arms and back, like the achy, gnawing feeling I get when I have a fever.  I didn't sleep well last night, and still have the fatigue and achiness this morning.

When I got home from PT, I went back to bed for about an hour.  I didn't sleep, but I was able to relax my muscles and mind.  While lying in bed, I started thinking about our patients who cut themselves on purpose.  Some say that it helps them refocus away from their other pain (usually emotional pain).  Others say that they feel numb, and cutting themselves makes them feel alive, able to feel something.  I have accepted their thinking, even though I never really understood it. 

This achiness I have is not strong, but it is unrelenting.  I am constantly aware that it is there, and I thought, "If I cut my arm, I can focus on that, instead of this constant gnawing in my arms and back."  I would just have one, specific area of pain, with an identifiable cause.  I would not actually do it, because I know that cutting myself would not get rid of the achiness, it would just add to my woes.  Having this thought, though, did help me to understand my patients better.

Having one real cut to focus on is manageable.  Having pervasive, unrelenting pain from an undefined source (physical or emotional) can be overwhelming. The impulsive thing to do is to make that cut.  The logical thing to do is to recognize that the cut does not make the other pain go away, it only masks it for awhile, by being a more intense and attention drawing sensation.  If the original pain is not dealt with, the pain from the cutting eventually goes away, and the urge to cut returns.  

I have found that movement helps to calm the achiness for a few minutes, so frequent stretching and position shifting helps.  Sitting and typing allows the achy parts to remain basically motionless, so I should end this post, and do something more active.  If I keep busy, I am less aware of the pain.  I talk with my patients about what they can do when they have the urge to cut.  For some, the urge is so strong, they feel they can't resist it.  For others, often, the key is keeping busy, distracting themselves from the pain.  Ultimately, though, the source of the pain must be dealt with, in order to resolve the pain.