dahlia in my garden: Rio Fuego in Coleus leaves

Tuesday, November 29, 2011

Tuesday-Newsday #40

Today’s subjects are from these categories: WARNING: OTC Drug Alert, Pain Rx News, Patient News, Lupus, and Osteoarthritis. The final category is Planning to Help Manage Pain and the article is titled, “Surviving the Holidays: Give yourself the G.I.F.T. of a stress-free holiday.”

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, and meds in anything I post nor can I guarantee 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!
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*WARNING*: OVER-THE-COUNTER DRUG ALERT
*PAIN Rx NEWS
*PATIENT NEWS
*LUPUS
*OSTEOARTHRITIS
*PLANNING TO HELP MANAGE PAIN

Thursday, November 24, 2011

Thanksgiving - Using Life’s Ingredients To Make Our Feast


[This blog post was accepted into the ChronicBabe.com Blog Carnival: “Food, Glorious Food...Or Not-So-Glorious As The Case May Be” and you can read all the other submissions by clicking on the name]


Usually on Thanksgiving we stop to think about all the things we are grateful for. This year, I want go a different direction and focus on the ingredients which make up a great Thanksgiving and how it mirrors our lives.

Thanksgiving is filled with such delicious foods as turkey, stuffing, gravy, cranberries, sweet potatoes, pumpkin pie, and much more. But imagine trying to create a beautiful feast without having all the traditional components available - and having to do your best to cook something fantastic no matter what.

One of my favorite television shows is “Chopped” on the Food Network. On the show four chefs are given baskets full of the most unusually incompatible ingredients you can imagine and they compete for a prize of $10,000. The odd combination in a basket could be rattlesnake, peanut butter, yam, root beer, and cherimoya (a delicious fruit which tastes like an apple crossed with pear, but containing poisonous seeds) and they must use all those items to prepare the most delicious meal they can. It’s a lot of fun to see them trying to transform things like Spam and Cocoa Puffs breakfast cereal into haute cuisine!

When they present their “gourmet” concoctions to the judges, they give the dishes such epicurean descriptions as, “Thai rattlesnake with a cherimoya compote and yam mousse with a root beer glaze.” I don’t know about you, but *I* wouldn’t want to be a judge and have to taste that peculiar mix of flavors!

This is such a representation of what life is like for all of us who live with chronic pain/illness. We never know when we wake up what ingredients will be in our own basket that we’ll have to work with. Some days the combination may be easy to handle, with life, self, relationships, and work balancing easily. Other times, we may be given larger portions of difficulties and have to blend them together with unexpected things which come out of nowhere.

“Bear in mind that you should 
conduct yourself in life as at a feast.”
~Epictetus  

No matter what we’re given, distasteful or palatable, we work with what we’ve got to make our own feast. Whether we are served the life equivalent of kumquat and sardines, we can always find a way to transform it if we don’t resist but instead reach toward the outcome we desire. It may not taste absolutely the way we would want, but with ingenuity and persistence our life feast can be unique and enjoyable - and entirely our own creation. 

This year as you count your blessings, please recognize the incredible job you do as your own life chef, cooking up all the aspects of your existence into an incredible Thanksgiving of the Soul. 

Bon Appetit!

(By the way, could you please pass the Spam coq au vin, with crushed Cocoa Puff crepes, and kumquat juice granita? Thanks!)

Tuesday, November 22, 2011

Tuesday-Newsday #39


Today we look at these subjects: Chronic Pain, TMJ-Jaw Pain, Lyme Disease, and Fibromyalgia. Our final item is from the category Living with Chronic Pain and is titled, “Gratitude For All the People in My Life.” It connects to Thanksgiving and is written by Selena at Oh My Aches and Pains!


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, and meds in anything I post nor can I guarantee 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!
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*CHRONIC PAIN
Radio Show Focuses on Chronic Pain Management
American Pain Foundation’s (APF) Micke Brown, BSN, RN, director of communications, and Cindy Steinberg, Action Network leader and Board of Directors member, along with Howard A. Heit, MD, FACP, FASAM, pain and addiction expert and person with pain, recently conducted an interview on the epidemic of pain and the need for improved pain care on the nationally syndicated radio program The Health Show. You can listen HERE
*TMJ - JAW PAIN 
*LYME DISEASE
*FIBROMYALGIA 
Study Seeking Teenagers with Fibromyalgia
To be eligible  you must be 13 to 17 years old at the start of the study, receive a diagnosis at the first study visit or already have a diagnosis of fibromyalgia, have had unsatisfactory results after trying other non-drug treatments for fibromyalgia (e.g., diet, exercise, acupuncture). To learn more about the study or to enroll, go HERE
*LIVING WITH CHRONIC PAIN
by Selena at Oh My Aches and Pains!

Saturday, November 19, 2011

Taking a Swing at Life’s Unexpected Curveballs

NOTE:  I wrote today’s piece as a submission for the 'Patients For A Moment' (PFAM) Blog Carnival and I was chosen to be included! You can read all the blog carnival submissions written on this theme by going HERE.

Looking ahead to the holiday next week: I will write Tuesday-Newsday as usual and then instead of posting on Saturday, I will put up a Thanksgiving blog post on Thursday.
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* Taking a Swing at Life’s Unexpected Curveballs *

Today I’m writing on this theme set up by the PFAM Blog Carnival: 

“When you have made some sort of peace and are coping with the chronic illnesses you do have and ‘life’ throws you curve balls in the form of a new diagnosis, how do you deal? What are your coping mechanisms? How do you come to terms with the new diagnosis?”

I look at this premise in two ways: How do I handle it when new symptoms occur and upset my carefully balanced life and how do I react when I get a completely new condition lumped on top of all my other chronic illness issues? I’ll start with the first one...

Whenever I have a new problem like pain in a place I didn’t have before or physical difficultly doing a certain action, I start out with the sincere hope that “It’s just temporary. Surely it will go away in a day or two.” And with that thought in mind, I then manage the symptoms the best way I can such as applying heat, taking anti-inflammatories, or doing doing a light pool work out (I absolutely cannot live without my daily deep water fitness routine). I also make sure to write down all the details regarding the new symptom in my Chronic Illness Journal, so I can track it over time. I take whatever steps are necessary to alter my life so I can function, and try to rebalance how things were working before to accommodate this temporary hitch.

However, if after a few days I’m still suffering from it, my mind starts to play tricks. One of the things it’s best at is catastrophising, which is “Fearing the worst and fretting about it, often to the point of severe anxiety.” My therapist used to tell me that I could write medical horror stories because I was far too good at catastrophising. I have to fight against myself not to think I am going to have the worst possible outcome: such as, I’ll need to urgently move because I can’t use a wheelchair in this small apartment because surely it will get to the point where I can’t walk at all and I’ll be in constant unrelenting pain. What I have to do is mentally shake my brain and make it stop, remind myself I have no proof the worst will happen, and force myself to focus on taking steps to deal with the problem as it currently is in the moment. And if it *does* get severe, to tell myself I will deal with that as it comes, using the support around me. 

“A great part of life consists in contemplating 
what we cannot cure.”  
~Robert Louis Stevenson

I’m getting better at staving off catastrophising, thanks to the cognitive behavior therapy I learned from my therapist. It can also help if you do meditation, tai chi, or yoga - something which requires a lot of calm focus. You can use distraction techniques when your fear and anxiety are high: read a book, watch a movie, talk to a friend, cuddle a pet, etc. Also, taking a positive action can help you feel more in control. Keep updating in your Journal, making fine distinctions between how the new symptom acts, if it gets better or worse when you do certain things, get very descriptive. This can really aid your doctor when trying to diagnose and treat it effectively, and could reduce the time it takes to get the symptom managed or cured.

As for getting a whole new diagnosis dropped on you when you least expect it... here’s my story:

I was enrolled in a study at the National Institutes of Health (NIH) in Bethesda, MD for people with my type of genetic collagen disorder. Currently the majority of my symptoms revolve around my joints and muscles, including severe pain, subluxation / dislocation, mobility issues, spasms, and more. A few weeks before heading to NIH for my annual check-up I got a very weird but non-painful symptom. I started producing breast milk - and I’ve never had children or ever been pregnant! I saw my HMO gynecologist who didn’t seem to take it too seriously. I tried to ignore the problem but it was awfully messy at times. At NIH, I mentioned this odd symptom and they were very concerned. They didn’t say what they suspected but I could tell this was not just a silly body thing. After a bunch of tests they told me the news: I had a brain tumor.

A brain tumor! I was in shock. I hadn’t expected anything like this! Luckily my husband was there with me to help listen, because I was so numb I missed some of what was said. It’s a very tiny tumor attached to my pituitary gland where the female hormones are produced. It was impractical to do a biopsy, because the gland rests in the brain behind the nose and eyes. They tried to reassure me this type of tumor is usually benign. If it did grow, it might need to be removed because it could further affect my hormones or overtake my optic nerve. Surgery would mean pretty much going right through the center of my face.

My mind was whirling. I could have brain cancer. I might need surgery which would affect my facial appearance. I could go blind (well, that could happen from my genetic illness, too). I was too shocked to catastrophize much beyond those simple thoughts. The next day the doctors sent me home with a prescription for a chemotherapy drug to see if it would stop the breast milk production and maybe shrink the tumor. Immediately I started to think, “Chemo will make me throw up! I’ll lose my hair! I’ll be too weak to function!” I decided to wait...

Tuesday, November 15, 2011

Tuesday-Newsday #38

Tuesday-Newsday time! Today we look at stories from these subjects: Chronic Pain, Pain Rx, Patient News, Migraines, and Sickle Cell Anemia. The final category is Planning to Help Manage Pain and the piece I've chosen is titled, Surviving the Holidays with Chronic Illness.” It’s a two-page article with tons of practical advice for managing your time and activities so pain won’t ruin your celebrations.

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, and meds in anything I post nor can I guarantee 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!
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*CHRONIC PAIN
*PATIENT NEWS
Is Your Appointment With A Doctor Or A Nurse? ... Are you sure?
Many nurses are going back to school to earn doctorate degrees, but does that give them the right to call themselves doctor? Many physicians don’t think so, and they are pushing for legislation to restrict who gets to call themselves a doctor. Read about this issue in two articles from the New York Times:
*MIGRAINE / HEADACHE

*SICKLE CELL
*PLANNING TO HELP MANAGE PAIN
by HealthCentral member Stacy

Saturday, November 12, 2011

Make Your Life a Fantastic Ride!

Last summer, as I waited to pay for something I needed at an art store, I noticed some attractive necklaces displayed by the cash register. Upon closer examination I saw they were all of the same theme: large charms with vintage photos of women doing all kinds of things from shopping to washing dishes. When I turned them over to look at the back I discovered something which captured my attention. Each necklace charm had a quote on the back. Most were cute or silly about being feminine. Two of them, however, were such amazing quotes that I left my place in line and jotted down the words in a blank space in the back of my checkbook.

Neither charm revealed who spoke the quotes, and only yesterday when I decided to share them with you did I do an internet search. I expected to find they were by “anonymous” but I was very surprised to find out two well-known persons said them. I’m going to talk about one of them today, and save the second quote for another blog post after Thanksgiving.

The first quote I found at the art store had been altered from its original form when added to the necklace to add more fun to it, but the message wasn’t changed: 

Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well-preserved body, but rather to skid in sideways - a wine glass in one hand and chocolate in the other - body thoroughly used up and totally worn-out, screaming at the top of your lungs: ‘Woo Hoo, What a Ride!’ "
The original text of this quote was written by famed author and journalist, Hunter S. Thompson. You can read his exact words HERE.
It’s a very powerful statement, that we only live once and are meant to enjoy all the gifts we are given to their fullest extent. For those of us with chronic pain and/or illness, it’s important advice to remember but it does need to be balanced. With our body limitations and medical needs, we do need to live more cautiously when it comes to the physical. However, if we pace ourselves and resolve not to let life pass us by, we can discover creative ways to experience new things and savor life. The key is not to allow ourselves to curl into a ball and just give up. To tie it into another quote, the amazing Mattie Stepanek (who I wrote about last week) had it right when he said on his deathbed, “Do not breathe simply to exist."
I most certainly understand how hard that can be, having fought my own demons of depression and struggling against completely giving in. Thompson’s quote is one we should all keep taped to the mirror so we don’t forget to reach out and embrace life in any way we can. It reminds me of one of our neighbors when I was growing up. After serving in the military, George got the job he wanted, married his high school sweetheart, bought a house, and together they had three children. In his forties, George suffered a mild heart attack which was successfully treated. Doctors gave him a great prognosis for a healthy future with only a few lifestyle recommendations.

But George was paralyzed with fear and it changed his entire outlook on life. He was so focused on the possibility he might trigger another heart attack that he quit his job and kept himself virtually housebound. His wife got a job and began supporting the family - and he never went back to work. He was afraid to play with his kids and wouldn’t exercise at all. Thirty plus years later, George has not had another heart attack... but his life has been stunted and very isolated. He never allowed himself to really enjoy doing activities with his children or grandchildren. From my observation, he seems a very bitter and unhappy person who hasn’t really enjoyed life at all. He just sits there expecting to die - and all those precious years have been wasted.

Don’t let it happen to you! Find ways to expand your horizons and explore ways to work with - not around - your physical limitations. Don't sit there waiting to die, simply breathing just to exist. Take Thompson’s advice and make your life a fantastic ride filled with everything good you can possibly reach!

Tuesday, November 8, 2011

Tuesday-Newsday #37

Today’s sujbects are Pain Rx, Patient News, Rheumatoid Arthritis, and Military Veterans. The final category is Pacing Yourself and is focused on dealing with events (particularly the upcoming holidays) without aggravating chronic pain. The post is from the website ‘CFIDS & Fibromyalgia Self-Help’ but it doesn’t matter if you have a different chronic condition; the info is helpful no matter what pain issues you have. The title is Pacing for Special Events: Slaying the Dragon of Post Exertional Malaise - Even More Strategies for Special Events.”

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, and meds in anything I post nor can I guarantee 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!
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*PAIN Rx
*PATIENT NEWS
*RHEUMATOID ARTHRITIS
*MILITARY VETERANS
*PACING YOURSELF
from the website, CFIDS & Fibromyalgia Self-Help