Cold

It’s cold out. It’s not as cold inside but that is probably because I have my heating turned up to a ridiculous level. It’s my little present to myself.

I also managed to spend $500 today on a maintenance check on my car. It surprised me a bit as I guess I was assuming it was covered in the warranty. But it wasn’t. So I forked out the bucks. I may be a sucker. I don’t know.

I have wasted tons of time in the last few weeks watching episodes of QI on YouTube in 10 minutes chunks. I’m at the last few available episodes. It’s felt like a real waste in many ways as I should be planning my syllabus and if I’ve going to be sitting at the computer, I should be getting that down. But instead I am watching QI and playing a stupid game online. Alas! It’s no longer Mah Jongg because the website has changed the pictures on the tiles and I don’t like the new ones. That, my friends, is how hardcore I am.

I’ve gone to see a chiropractor a few times (on recommendation of my previous massage therapist). Apparently my hip was injured in the car accident. That seems better but he’s now trying to help my fibromyalgia. He uses a microcurrent which I don’t completely understand but which I’m willing to give a go for a few times.

Just to keep you from worrying about what you might need to skim through, I am not going to post anything about the Christmas holiday. I am also not going to post anything about how I’m going to use the New Year as a chance to get myself together finally. Why bother either of us with that?

[Via http://splitwindow.wordpress.com]

Down syndrome on the upswing

FEATURED SEARCH: chromosome disorders

Prepare for a growing focus on caring for adults with Down syndrome, as the implications of the following study strike a chord with researchers. A cross-sectional study of 10 live-birth registries in the US shows that the incidence of Down syndrome is increasing for a number of reasons (predominantly among non-Hispanic whites). Time for new evidence-based information on the care of heart problems and quality of life issues for adults living with Down syndrome, the authors say.

RESULT: Prevalence of Down Syndrome Among Children and Adolescents in 10 Regions of the United States

Pediatrics | Dec 1, 2009

A study from the UK reaches a similar conclusion: Despite widespread screening, the incidence of Down syndrome is increasing, partly for demographic reasons. “Even with future improvements in screening,” the authors predict, “a large numberof births with Down’s syndrome are still likely, and thatmonitoring of the numbers of babies born with Down’s syndromeis essential to ensure adequate provision for their needs.”

RESULT: Trends in Down’s syndrome live births and antenatal diagnoses in England and Wales from 1989 to 2008: analysis of data from the National Down Syndrome Cytogenetic Register

British Medical Journal | Oct 26, 2009

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OTHER RECENT SEARCHES ON SEARCHMEDICA

Search: clinical features and diagnosis of fibromyalgia

This search term struck gold with two different concurrent reviews that describe a decade of new research into fibromyalgia and synthesize it into recommendations for diagnosis and treatment using both new medications and established non-medical approaches. The first article below includes algorithms for diagnosis and a review of current guidelines.

RESULT: Managing Fibromyalgia: An Update on Diagnosis and Treatment

The Journal of Musculoskeletal Medicine | Oct 17, 2009

RESULT: Developments in the Scientific and Clinical Understanding of Fibromyalgia

Arthritis Research & Therapy | Oct 14, 2009

Search: fibrinolytic therapy

A remarkable case report from Turkey describes rescuing an elderly woman from pulmonary embolism (PE)  by conducting catheterization and angiography during cardiopulmonary resuscitation. The second result is a report of similar cases from Germany. This strategy should be considered routine for patients suspected of PE during cardiac arrest, they authors conclude.

RESULT: Acute Massive Pulmonary Embolism With Hemodynamic Compromise Treated Successfully With Thrombolytic Therapy

Clinical and Applied Thrombosis/Hemostasis | Dec 1, 2009

RESULT: Impact of Rescue-Thrombolysis during Cardiopulmonary Resuscitation in Patients with Pulmonary Embolism

PlosOne | Dec 15, 2009

Search: cat-scratch disease

RESULT: Brain oral session: Cortical spreading depression

Journal of Cerebral Blood Flow and Metabolism | Sep 15, 2009

At the onset of cortical spreading depression, blood rushing in after the induction of cerebral ischemia accelerates ischemic damage, probably by increasing the hypoxic burden to the brain, according to this report of a study on mice. (But what does it have to do with cat scratch disease?)

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SEARCH TIP: Abbreviations and irrelevant results

This person’s original search generated a bevy of irrelevant results for a simple reason: SearchMedica translated cat-scratch disease to an acronym (CSD) and then returned results for an alternate definition of the acronym, cortical spreading depression.

You can avoid this problem by putting the term in quotation marks. That’s what we did in the search box immediately above, which produces no irrelevant results.

[Via http://clinicalsearchtips.com]

Fibromyalgia Info.

I’ve been doing some reading and internet surfing and discovered a few things I didn’t know about Fibromyalgia, which are very interesting.  It would seem the current thinking is now that Fibro is caused by trauma to the Central Nervous System (CNS) which could be for example a knock on the head, a neck injury, a virus or severe stress.  Now that there are much more precise imaging techniques (qEEG, fMRI, PET scans etc) for looking at the brain they have found abnormalities there in people with Fibro. There is a technique called brain mapping where a qEEG(quantitative Electroencaphalogram) is used to map abnormal activity in the brain, this information is then used to apply the most appropriate treatments.

Here are some links to what I found if you’re interested-

http://www.ei-resource.org/articles/fibromyalgia-articles/fibromyalgia-pain-isnt-all-in-patients-heads-new-brain-study-finds/

http://www.jpain.org/article/S1526-5900%2808%2900650-0/abstract

http://www.fibromyalgia-symptoms.org/fibromyalgia_brain.html

http://www.plosone.org/article/info:doi%2F10.1371%2Fjournal.pone.0005224

www.fmpartnership.org/documents/Post-Traumatic_FM2.doc

[Via http://zhelan.wordpress.com]

The Ugly Side of Karma

Do you know the feeling when some thought, usually a guilty and  bad one,  creeps into your mind but you’re not ready to accept it yet?  It flits in and out and by the time you are ready to accept the thought, grab it,  and call it your own, you’ve pretty much learned the lesson you needed to learn.  The lesson may be learned at that very second, but for me, it’s usually not owned until it has been written and most probably read.

Our whole Christmas vacation in Aruba was first discussed  over a year and a half ago. Times were tough, I had been very sick with numerous illnesses, one after another, for over a year and a half.  Our marriage had been in trouble the whole summer.  My husband and I were miserable both together and alone and I felt betrayed. The key factor that used to hold us together was trust, but I felt that trust was broken. Verbally. At that time,  I remember vividly asking my mother “if this all works out and we can make it through together, do you mind if the four of us go away together over Christmas break?” Knowing what we all were going through, and the fact that the children were very upset,  she reassured me that it would be fine: “You definitely deserve it! “

That was then, a year ago. After getting through the summer and my husband and I working our problems out, again, I asked my mother if it was still ok. “Yes, she said, definitely.”  What I had forgotten to do and this was totally my mistake was share these plans with my sister which was my fault. We talked and I apologized and she was gracious.

Going to Aruba had been a yearly discussion since my seventeen year old son had been invited a multitude of times to stay with his best friend at his best friend’s grandmother’s house in Aruba. Huge house. Ok, mansion. We  had never seen it but all of my son’s other friends had been there with their families.   Tim was not able to go several times because we all had plans and, I didn’t want Tim to be away without us at Christmas.  It just never felt right.

The tradition of Christmas with a Jewish family is an unusual one. My parents raised us with no religion, other than culturally Jewish, but we celebrated Christmas.   When I was very small I remember having a Christmas tree, ornaments;  Santa Claus, reindeer, the stuff that dreams are made of.  The only real tradition in our family was that we spent it together. It wasn’t easy all the time. People would fight, or act immature, gift-giving and receiving became an angry or sullen event at times, my sister would think we gave too much or not enough but the 4  cousins were together and that, at the time, seemed enough.

It seemed to be enough until 8 years ago when  6  days after Christmas on New Year’s Eve, my dad passed away. It was also the day before my parent’s wedding anniversary on New Year’s Day.    After that, nothing was the same, ever.   Christmas for me, and probably  others was absolutely depressing and horrible.  I wanted to move Christmas to my house but apparently there was no leg room for any other alternative.  In my which, in my estimation that was a mistake.

Once my sister and her children went on a cruise paid by our mother but in the end, my mother and brother in law decided not to go. My family stayed behind to be with our mom on Christmas, we didn’t want her to be alone. Surprisingly,  she was furious at our decision.  It was another one of the countless, “we want to be thoughtful and be with you actions” that always seems to blow up in my face and I become the evil one. Part of my life back then. Part of my life when I accepted it. Not anymore. It was a pattern and I tried to crush it with every bone in my body. Progress.

The Fessler, then Fessler-Bernsein, then Fessler-Friedmann  Christmas tradition in our family,  is that we have store-bought, refrigerated cinnamon rolls that come in a tube with  a container of vanilla icing; the best part.  This has been a tradition since my sister and I were children and we finally passed down the tradition of icing the cinnamon buns down to our children many years ago. We also had scrambled eggs and bacon, hard rolls that now have turned to bagels and presents; too many presents or too few, name in a hat, no way. Just for the children? My sister and I were jealous, after all, we were children too. But not having the sound of the Christmas bell ringing in the holiday by my father was key. One can’t replicate a tradition if a big part of the tradition is not alive anymore. But so it went….until this year.

This brings us to the present when we were scheduling our flights, the four of us, to go to Aruba. The grumbling started gaining momentum and soon my mother was hysterical trying to make us cancel it at the last moment and :guilting” us beyond belief. It wasn’t fair to anyone but when feelings are hurt, fairness flies quickly out the window along with the early morning singing dove.

So, we are here in Aruba, having a lovely time, entitled to have a good time after my health problems, our marital problems and now my husband’s unemployment status.  We had paid for the trips many months ago and we decided we did not want to cancel; it had already been paid for.  Our son, Tim,  is staying with his friend Aaron in his grandmother’s mansion and Jillian, Dan and I are staying at the Marriott and enjoying ourselves immensely.  The sun is hot, the breeze is beautiful and the water, my most beloved element, is light blue and sparking. Everything is great here. Except it isn’t.

I miss Tim. I actually am a little upset, sic, hurt, that Tim wants nothing to do with us.  Kind of like my mom probably feels about me.  These are the lessons we are  born to learn the hard way.Tim is probably doing all sorts of things I probably don’t want to know about living in the Bachelor Pad with Aaron, aka “the pool house.”   He stopped by unannounced once with his friend to say hello because his friend’s dad gave them a mini-lecture on how it would be nice to see your family on Christmas Day.

Ouch. Kind of like my mom probably feels about my family and I.   These are the lessons we are  born to learn the hard way. What is happening to me is what happened to my mother, albeit with her blessing. I do mind that my son is acting invisible, a little arrogant, and very much cool and distant. The irony is not lost on me. His age, 17, is not lost on me  We gave him permission to go and to have fun, not fully thinking that he would,  to the extent of not even sending an e-mail or picking up the local phone to say hello.  It burns and it stings and I feel like a complete idiot. What did I THINK would happen? Well, actually, not this.

We try to teach our children good lessons, life lessons. What have we taught our son about this trip? Yes, we felt he was owed this vacation, yes, my mother said we should go, yes, we love it here in all it’s beauty…….but the truth of the matter is at this moment, I feel like I want to cry. I want to cry as my disappointment as a mom and begrudgingly as a daughter who now feels just the tiniest of guilt.

The Christmas tradition in our family, which is the most traditional thing we do, is that we have store-bought, refrigerated cinnamon rolls that come in a tube. This has been a tradition since my sister and I were children and we have passed down the tradition now to our children who now frost the cinanmon buns.  It really isn’t anything much, the store buns are the same every year, every year we fight about how crispy the bacon should be or how many presents we should buy. But, we’re together and while I love being on vacation, anyplace warm, watching the four cousin  battling over which cinnamon bun to ice and how much wouldn’t be so very bad. We learn from these experiences.  Whatever goes around, comes around, the very definition of karma.

[Via http://hibernationnow.wordpress.com]

MERRY CHRISTMAS!

MERRY CHRISTMAS!

ME AND ALL OF MINE WISH YOU AND ALL OF YOURS A VERY BLESSED AND JOYOUS CHRISTMAS AND HOLIDAY! WE HOPE ALL OF YOU ARE HAVING AS MUCH FUN AS WE ARE HAVING! SO UNTIL OUR PATHS CROSS AGAIN WALK WITH SUNSHINE IN EVERY STEP AND JOY IN YOUR HEART……. LILA

PLEASE NOTE THAT IF YOU ARE READING THIS POST AND YOU ARE NOT ON THE WEB SITE “LILA LOST IN THE FIBRO FOG….” THEN WHAT YOU ARE READING HAS BEEN STOLEN AND IS BEING USED WITHOUT MY AUTHORITY AND I HOPE YOU WILL COME TO MY WEB SITE BLOG AT WORDPRESS  http://www.lilabyrdakabirdlady.wordpress.com 

[Via http://lilabyrdakabirdladybyday.wordpress.com]

I feel like a failure

I did not want to admit this to myself or anyone else…but I am seriously sick

I am humongously swollen from head to toe. I feel sick and feverish. I feel like I weigh a bazillion pounds. Any strength I gained after the IVIg is gone and I’m worse off than before it. My head hurts. My guts hurt. My skin is creepy all over. The worst part is shortness of breath. Every little movement starts me gasping All my joints hurt. All my muscles hurt. Even with my o2 cranked up to 4, I still feel like I am suffocating.

I have no clue what is wrong. I need to call the doc. Tonight is the last straw. I am not coping well.

Like I said, I feel like a failure….as if it’s my fault that I am not better. While listening to scripture studies on BYU TV, something made me aware of the hopelessness about my health. I realized I was holding my muscles more rigid than I ought to. The more it hurts to breathe, the more I try to avoid it. I was unconsciously sort of holding my breath. That surely can’t be helping things.

IVIg was going to be what made me better. I’m feeling very discouraged right now.

[Via http://wendyusuallywanders.wordpress.com]

Fibromyalgia? Can Chiropractic Help?

Background: Let’s back up a step.  Patients with “fibromyalgia” may have also heard the following diagnoses from doctors when describing their pain as their condition worsened:

• its your age
• its in your head
• its genetic
• or a blanket statement such as “you are a woman/man/tall/short/fat/skinny/allergic/hypochondriac/sensitive to weather ” etc. etc.

These are statements that our health care providers might throw out when they don’t know what to do.  For fibromyalgia there is still no cure.

Derivation: from fibro-, fibrous tissue, Gk. myo-, muscle, Gk. algos-, pain, meaning muscle  and connective tissue pain i.e. ligaments and tendons (the things that hold together bones and attach muscle to bone).  We would expect to feel it if we were lumberjacks, or ditch diggers… until our bodies adapted to it.  And there’s the key – our body’s are supposed to adapt to use, even lack of use.  But some don’t and we have pain.

Chronic Pain – NOT!: We don’t accept that condition in our office.  There has to be a reason for patients to suffer.  I have jackhammer operators that do not have fibromyalgia and inactive patients that do have it.  It does not add up.

Secondary conditions: There is a long list of conditions that have been connected with fibromyalgia including joint stiffness, sleep disturbance, even depression.  Now there is a “fibromyalgia syndrome” which includes these conditions added to the pain.

Our approach Part A: Firstly, I discount the diagnosis. I don’t care what the doctor’s have said, patients should not suffer an incurable condition expecting a lifetime of pain and its sequaelae:

• because they hurt, they don’t move as much
• because they hurt, they get depressed
• because they hurt, they get fat
• because they hurt, and don’t move, and get fat, they don’t sleep as wel
• or have normal bowel function
• or have side effects from pain medication
• or a host of other things that would happen to ANY of us if we hurt, did not move as much, took meds, gained weight and got depressed.

Our approach Part B:  Chiropractic care, nutrition, movement and hope.  Patients get better and the condition goes away. Chiropractic 101 still works and the body heals.

[Via http://millerfamilychiropractic.wordpress.com]

Mind Over Matter - Health, Thinking Positively & the Mind-Body Connection! - Ashley Boynes, Community Development Director, WPA Chapter

When dealing with chronic illness like arthritis, especially when you are in pain, it can be hard to maintain a positive attitude. Sometimes, with certain diagnoses, it may seem impossible to find hope or remain optimistic. However, as we’ve mentioned in past blogs, “Food For Thought: The Power of Positive Thinking”, and “ “Turning Negatives Into Positives”, thinking positively, even in a negative situation, can not only make you feel better emotionally, but can also benefit your physical health!

In fact, there have been studies that show that positive people are more healthy than negative people, and there have also been studies that supposedly prove that the “mind over matter” theory truly exists. Can our thoughts heal?

No doctor will write you a prescription for a dose of laughter or a bottle of smiles, but, most will recommend practicing an overall lifestyle of wellness — and this includes thinking positively, and doing things that make you happy — especially since depression is often a comorbidity with diseases such as rheumatoid arthritis and/or fibromyalgia. In some cases, the cause is physiological – some autoimmune diseases cause an imbalance of certain chemicals in the brain; in other cases, the cause is emotional – patients may feel down and depressed about their diseases. (This is why we think that having support from loved ones — whether in person or via an online community, is so important!)

It may sound like baloney to some of you. I know when I am having a “bad” day, that it is easy to scoff at people who tell me to “stay positive” and “keep smiling” — I tell you, it’s easier said than done! That being said, I do know that there is, however, validity in their points. After all, no one wants to be around a Debbie Downer all the time, and being happy does make you feel so much better…if not physically, than at least emotionally and spiritually! Today I woke up feeling badly - it seemed that all of my physical ails were bothering me at once. I had a can’t-face-the-world, “how can I keep living like this”, BUMMER kind of morning. However, as I sipped my tea, dog snoring at my feet, birds chirping in the other room, doing work I love, in a beautiful home in all of it’s holiday bliss, knowing that I have a wonderful support system of friends, family, and loved ones – I felt supremely blessed, health issues aside. In fact, reveling in all that was GOOD, thinking about the many wonderful things and people in my life, doing a job that I love that at times helps others, made my health issues a NON-issue. Sometimes, all it takes is to look at things from a different perspective! Instead of moping around, dwelling on your sickness and wondering “why me”, take a step back and wonder, why NOT you? Bad things happen to all of us. You can handle it!

The good news is, there are many medical treatment options out there that you can try, whether traditional or naturopathic. There is a whole world of nutritious food, and helpful websites, and positive people to help you keep pushing on! They say that you can heal yourself with your thoughts, so why not give it a try?

You may be wondering who “they” are. Here are just a few examples that I’d like to share  – before I begin, I’m not saying that a positive attitude will “cure” you. Being optimistic, in almost all cases, is not going to allow you to give up your meds or never set foot in a doctor’s office again, but, it will make you happier in general, which could potentially lead to better health, and will definitely lead to a better overall outlook. Besides, they say that positivity and happy thoughts are good for the human collective conscience as a whole. And isn’t THAT a worthy goal?

Here’s who “they” are…

* Louise Hay - Louise Hay, author of “You Can Heal Your Life” and “You Can Heal Your Body”, among many other books, is one of the pioneers of the mind-body link, and claims that she healed her cancer through the power of positive thought and “thinking it away.” Through “affirmations”, she convinced herself that she was not sick…and she, somehow, was cured! In fact, she believes that there are MENTAL causes for PHYSICAL ailments. Regardless of what you believe, her story is an inspirational one!

* Deepak Chopra - Deepak Chopra encourages overall well-being through physical and emotional wellness, spiritual health, and guided meditation. He is a world-renowned leader in the field of mind-body healing, and has held world leaders and international celebrities among his clientele. He has authored more than 55 books and believes that we hold the key to our own well-being. He is certified as a traditional MD but is more engaged in “alternative” medical practices. He encourages a clean lifestyle in all ways and is known for his theories on shared human consciousness and positive thinking starting with one’s self.

* Marilyn Mandala Schlitz - Marilyn Sclitz, PhD, is at the forefront of Noetic Science, a new field that has been brought to light in the book, the Da Vinci Code. Marilyn, who heads up IONS, has “pioneered clinical and field-based research in the area of human transformation and healing.” She has authored books on “mind-body medicine” and has helped to perform scientific experiments on healing and is bridging the gap between medicine and spirituality. Schlitz is “a leader in the area of consciousness research. She has conducted basic science research on the powers of the mind, including remote viewing, mind over matter, and distant intention and healing.  She has engaged in clinical studies of  consciousness healing and is currently completing a National Institutes of Health (NIH, part of the Department of Health) sponsored study looking at the power of compassionate intention on wound healing in woman undergoing reconstructive surgery.”

Whether you “believe” any of this or not, it is compelling information to take a look at! It doesn’t matter what religion, faith, or creed you practice, if any….it is about using your mind and soul to aid in healing your body. We are not encouraging or pushing any viewpoint, but just putting it out there…

I look at it this way — it couldn’t hurt! With the holidays approaching, there is no better time to think positive and to get in the “jolly” spirit! Why not start today with leading your health into a positive direction? I’m going to!

Let me know your thoughts – how does being positive/optimistic help you? Have you ever “healed” an ailment through thoughts or know anyone for whom these types of things have worked? I know people who have been healed in a near-fatal situation by an Indian stone, people who have willed cancer to leave their system, and (this is just in my case, not preaching to anyone!) have seen prayer work wonders. I know from personal experience that trying to be happy in light of it all is the best weapon against disease! After all, being negative and dwelling on it isn’t going to help matters much – so making a conscious effort to stay optimistic, hopeful, and positive cannot  hurt! It can only help. Why not give it a try? You can think yourself healthy!

Thanks for reading, and be well! And please, stay tuned for my next entry in Ashley’s Journey to Wellness.

PS: ‘Tis the Season! Feeling generous and want to give a gift to help spread arthritis awareness and eventually find a cure? This holiday season, why not donate to the Arthritis Foundation of Western PA? There are many ways that you can help!  Check out our many ways to give this holiday season…

Stop down at our Jingle Bell Run/Walk 5K tomorrow, December 12th, and sign up to walk/run, or, enjoy the Holly Hour and donate tips to the AFWPA! Info can be found here: http://jbrprgh.kintera.org

You can donate while you tweet! So easy! Not to mention, you can give in low increments! Visit www.twonate.com and use AFWPA as the charity code! Here is our profile.

Another way to give…WITHOUT spending a dime? Be sure to use www.GoodSearch.com as your search engine and set “Arthritis Foundation of Western Pennsylvania” as the charity that you “GoodSearch” for. Also, this holiday season, you can do the same as you finish up shopping online – use www.GoodShop.com - every search and every purchase benefits our chapter at no extra cost to you!

We have a Cause on Facebook, too. You can “Join” or cause or “Donate” here to Help Spread Arthritis Awareness – click here!

Our friends at WHIRL Magazine also featured us in their Charity WHIRL 31 Days of Giving special: check it out HERE.

Last but not least, you can always visit our chapter homepage at http://westernpennsylvania.arthritis.org for information on how to donate online or how to take part in a United Way payroll giving campaign to benefit the Arthritis Foundation of Western PA. Feel free to call us or mail us a pledge if it suits your fancy, too!

We know times are tough, but we appreciate any help that you — or Santa — can give us this holiday season! To learn about some of arthritis research initiatives we’ve contributed to, click HERE — let’s move together to find a cure for arthritis! Together, we can make a difference!

Thanks,

-Ashley Boynes

Community Development Director

Western Pennsylvania Chapter

voted, “Best Blogger in Pittsburgh!”

[Via http://arthritisfoundationwpa.wordpress.com]

Therapeutic Benefits of Cold Laser Therapy for Pain Management

             The Non-Pharmacological Therapy for Chronic Pain

• Low-level laser therapy (LLLT) can provide proven pain relief, usually within 6-8 treatment sessions.
• This non-invasive procedure, which also is called advanced cold laser therapy, utilizes the latest technology and is FDA-approved for the treatment of many types of chronic and acute pain, including back pain, neck pain, carpal tunnel syndrome, tendonitis, fibromyalgia, chronic fatigue syndrome,  and sports injuries to name a few.
• In many cases, pain and inflammation are improved after the very first treatment.
• Light energy from low level lasers penetrates deep into musculoskeletal tissue (e.g., muscles, joints, bones) to:

 1. Relieve pain

2. Reduce swelling and inflammation

3. Promote tissue repair and healing

4. Improve blood supply (circulation)

5. Stimulate the immune system

[Via http://pltcsb.wordpress.com]

Happy Holidays! No Batteries Needed

Great blog from Egoscue Santa Monica about getting away from technology and getting your body back to functioning properly. These are some great parts:

No Batteries Required

Technology can be a wonderful thing. Advances allow us to save time & energy while increasing conveniences in every-day life. We’re able to share emails like this at the click of a button. With that said, however, it is important to remember that there are many things in life that technologies cannot replace.

…

Your body has basic requirements for maintaining health and eliminating pain. Movement is one of those requirements. (Think “Move it or lose it”).

Read This Blog : Happy Holidays! No Batteries Needed

[Via http://palmbeachegoscue.wordpress.com]

a very genuine moment...alone

It is very early Sunday. Then it will be Monday, then it will be Tuesday. Obvious statements right? Well yeah, but the point of them is how long those days will seem to me. I know this because of how long the last two weeks have been for me…ever since I heard the word “lymphoma” from a highly respected specialist in his field. Once those words echoed through my brain a bit, time has almost stood still. I’ve been stuck in fear of a couple tests, a surgery and then (now) who only knows what is yet to come. I’ve been reading, trying to learn the how, why and “what if’s?” I’ve had all the talks with my mom and my boyfriend. Nothing is confirmed, luckily so…but in my head for these moments…the not knowing is close enough to a “temporary cancer sentence.”

For now, I can’t catch a moment of peace lost in forgetting…because of the massive wound on my neck (healing; yet still very bruised, swollen and painful stitches) of the dissection/biopsy. I get ready to take a bath, and look in the mirror, and within minutes I have a stream of tears falling down my face. I see these masses still left to deal with, no matter the outcome. I see the drama of a phone call coming in on Tuesday afternoon confirming my worst thoughts…and once again, being left all alone. Although my mom has been amazing, she either doesn’t fully grasp how scared I am and how much pain I am in…or she’s just trying to not baby me too much so I don’t think the worst. Either way, it’s not having a positive effect on me. I just end up in my room, alone, sad, scared, more scared than I’ve ever been, feeling rejected, annoying, in the way…and did I mention…ALONE!!!!

I have the worst luck with Holidays at the end of the year. Seems someone always dies or something horrible happens. It’s made it almost impossible for me to look forward to this time of year. But I still do. Sure I want some presents. But I also want to see the expressions on my mom and Pedro’s face as they see the thought I put into their gifts. I look forward to all the lights, the snow, the smell of the snow…the feel of the snow. Snow makes me happy!!! One of the few things, pure as it is that does make happy. I’m the same way with water (except when it leaks into our basement of course.)

I’m scared of money, chemo, radiation, losing my hair, my dignity, left with a neck full of scars. It’s not like I don’t have enough skin drama to last 10 lifetimes already. I’m scared of getting better just when we run out of money and then having to leave our home. I’m scared of what if this potential cancer is really small lumps broken off from a larger mass in my abdomen. That’s kinda the way lymph node cancer can work. What if I’m going to die??? What if I want to die?? What if I’m done???

True. The word cancer is not a known issue yet. But for me; it’s my life, it’s my neck, and I don’t know what the hell is wrong…but something IS seriously wrong with the way I’ve been feeling lately!!! I don’t smoke. I never smoked; all but a little stoner stent in my mid to late 20’s. I’m 35 now. I hate that my mom still smokes. I understand her nerves and the addiction. But it’s like risking my life all over again. Even if I get a clean-ish bill of health this time…what about next time??? I have a very weakened immune-system. This is something she and I need to understand does come with some very serious risks. Sadly I am more likely/prone to catching certain illnesses…and that does include, cancer.

My throat still hurts so bad from that breathing tube used during the surgery…as does my lower lip still too…OUCH!! It feels like sandpaper about 75% of the time. Now with the heat being on so high, it makes the air dryer and makes my throat hurt even more. My neck looks so much worse than the picture I posted a couple days ago. It’s all purple/yellow now. It’s also so much bigger. Luckily the last bandage has not fallen off yet, because I’m not really ready to see what’s underneath yet. It hurts to lay comfortably. It hurts to turn my head in certain ways. It hurts when I sit still and do fucking nothing!! But just like my Fibromyalgia…I’m expected to bounce right back. My feeling are very hurt by some of this. Everything with me in the last two-three full years has been full of fucking hurt!!!

With Fibromyalgia generally comes Chronic Fatigue Syndrome. CFS is fairly self-explanatory; sometimes you’d almost rather die than get out of bed and function because of the insane fatigue. But even b4 the surgery, I felt much, much worse recently. I’ve literally not done anything fun or casual in the last many months. I’ve been to doctors and hospitals and that’s all. I went to the Apple store twice to get my new phone (which I needed) and the AppleCare for my laptop. And during both those instances, by the time I got back to the car….I could barely breath, I was so sore and dizzy…I felt scared, shaken and again….ALONE!!!!

So take me now, with all the above…add in the vicodin (that is seriously needed for this kind of pain) and I’m utterly useless!! I’ve managed to do a few things. I wrapped another present this weekend. I made some tea and toast for my mom. I’ve taken care of my animals. I’ve kept up with basic grooming. Other than that…I’ve just been sleeping. The more I sleep…the closer I come to the countdown of the phone call from the Otolaryngologist. His news will determine so much of the Kimberly I will remain or that I will become…good or bad.

If it’s not cancer, and I can painfully still have the remainder of these lumps removed…I’d actually almost be semi-satisfied. I do want them gone, so my head looks more…normal!! So I have hope that after the healing of that, I could get back to doing some regular things again and having some of my depression lifted. But, if it’s the other kind of phone call…I will most likely stumble to the floor and not do anything for myself anymore…because what is the point?? I’ve had too many illnesses. First my skin, then my mind, then my body…and now my body even more so. I feel so sick. I’m in so much pain. I’m so scared and I don’t think I can take much more of this.

My mom and boyfriend need to work during the days. They need to sleep at night. And they need some chill time to themselves in the evening. I understand that (to some degree…or I really try to.) But where does that leave me?? It leaves me…ALONE!!!

…and these are the genuine FEARS twirling around my brain at a non-stop speed…that nobody seems to understand ;c/

[Via http://kimberlysawczuk.com]

Does fibromyalgia “get better” with age? (Alert: Whining ahead)

I’ve encountered this statement a few times since being diagnosed with fibromyalgia in 1992. Finally, at age 63, I think I’m qualified to offer an opinion upon it:

No, unlike a fine wine or a teething puppy, fibromyalgia does not get better with age.

It might seem that way, because some things that do change with age may lessen one’s concern about symptoms, or even ameliorate them.

As we grow older, we expect to have memory lapses, aches and pains, and reduced energy and strength. The person with fibromyalgia has a head start on all of these, believe me! But with advancing years, these symptoms seem a bit less unreasonable—or perhaps I should say unseasonable—even though I am still more tired, forgetful, etc., than an otherwise healthy person of my age ought to be.

Starting several years ago other people about my age began assuring me that my symptoms were “normal” for this stage of life, they had them too. Their intentions were benign, but I don’t like to hear this; not because I am clinging to the distinction of my disease, being “sick” but not “old”, but because I feel that the impairments of fm have been different. [It also echoes the remarks so familiar to people with fm or cfs or other chronic conditions, “Oh, you’re really tired/achy? Yes, I’ve had that too, just get some extra rest, you’ll feel better.”]

I was 35 when an injury caused the continuous pain and disturbed sleep that gradually turned into fibromyalgia by age 40 or so. During that time I went from having an unusually good memory, to the reverse. What did I do yesterday? Did I eat lunch today? What did I do this morning? Often I can’t answer such questions without some sort of reminder. Sometimes even with a reminder I have no recollection whatsoever of very recent events, and everything beyond a few days ago is gone or vague. Some days I grope for words—for a particular word, or to be able to put my thoughts into words at all. For a person who used to remember where on the page a certain passage of a book was to be found, or the details of bibliographic citations years after checking them, this sudden decline was, and remains, a severe assault upon my sense of who I am. And rightly or wrongly I think the daze that so frequently envelops me is not typical for a 63-year-old. Maybe at 85 I’ll feel it is age-appropriate. Until then, dammit, I’ll feel ticked off and robbed. Join the club, eh?

Still, inevitably over time one grows less sensitive to diminished abilities, and the limitations are less at odds with one’s lowered expectations.

As for symptoms seeming to decrease with age, I think this is a result of getting better at coping and self-pacing. I’ve learned to avoid things that aggravate the fm, such as late nights, loud or crowded places, being on my feet too long, and overexertion (whether it be in duration or in type of activity). I’m less of a perfectionist, I have a combination of medication and mental techniques to help me get to sleep most nights, and I feel okay about saying “I need to go lie down and rest for a while”. It’s following the naval maxim of “maintain a steady strain”.

The danger with all of this—lowered expectations, avoidance of stressors—is that it becomes a downward spiral. And age provides a reassuring excuse. Of course I’m doing less than I did last year, I’m getting older.

I keep pushing myself mentally, with challenging reading and dogged efforts to learn new things. Even though most of what I read today will be gone from my mind tomorrow, I tell myself that the effort may keep the neural connexions from deteriorating as we know they do with lack of use. Blogging has become a good motivator, encouraging me to do some writing, and follow research interests to produce and finish short pieces.

Physical exertion is harder because the pain and fatigue always increase, sometimes severely. When I was working a fairly physical job, I came up with this description for how I felt when I got up in the morning: “as if I’d been forced to run up a mountain, and then kicked and rolled all the way back down”. The chronic fatigue and pain in muscles and joints have been dialed back now that I’m not on my feet all day lifting, bending, carrying, etc., but they’re still there. I’m struggling to stay on a program of walking about 45 minutes every other day, motivated by a recent blood-test result that was in the pre-diabetic range. Some days I don’t want to expend a big part of the day’s energy for walking, or I feel worse than usual. There are no rewards of feeling noticeably better, but if I take the dog and my camera I will enjoy the walk itself.

Being off of methadone has made a big difference mentally and physically. It’s been two years last month, and I think I’m still improving. I couldn’t have walked for 45 minutes before that. Drugs that don’t help just weigh you down, and methadone does a lot more harm than most. (earlier post about getting off methadone)

So, in some ways I really am feeling better. But it’s not due to aging.

Note for logophiliacs

After I put the word “whining” in the header, I encountered what would have been a good alternative if it weren’t quite so obscure. It has such appropriate associated meanings. I may whine and twine, but I’m trying not to dwine.

Twining

A minor lexicographical result of the devastating floods in Cumbria last week has been the appearance in at least two UK national newspapers of the dialect word twine, to complain or whine (“Cumbrians are a unique breed. They say what they see. They are hands-on people. They will twine and moan but then they will just get on with it.” — Metro, 23 November). It was at one time widely known throughout Scotland and the north of England. By way of another of its senses, to be fretful, ailing or sickly, it may be connected with dwine, another dialect word, to pine or waste away, which is from an ancient Scandinavian source. from Michael Quinion’s World Wide Words, # 667, 28 November 2009.

Photo by author.

[Via http://nosleepingdogs.wordpress.com]

What day is it

Today started well enough as I actually got up before 8am and took my son to school, doesn’t sound like anything special to anyone else but when you can’t get into any kind of routine it’s an acheivment.

There is quite a bit of pressure on me just now as I’m usually the one who makes the money to get us all by Christmas and the new year, maybe that’s why I’m sleeping more than usual just now.

I didn’t get much work done this morning but it felt good just even putting the pc on turning on the radio to my favourite station and it felt as normal.

But come 12 o’clock my energy gave way and the fatigue set in or realism, you see having fibromyalgia isn’t a career choice it’s something that just hits you and throws your life into semi chaos.

Can’t Christmas wait for another year…..

Top Tips to Relieve Back Pain and Fibromyalgia (Fibrositis).

There is much speculation about fibromyalgia, with some doctors refusing to acknowledge this painful condition, often the GP or physician will not offer adequate treatment or even refuse to treat the sufferer.  However, those people who experience the painful muscle spasms and pain associated with this condition would try to convince you otherwise.

Fibromyalgia is usually stress-related, and can be brought on by damp and cold weather conditions, and usually affects people from middle age onwards. Sufferers are those who often have jobs which involve sitting for long periods of time,, such as at desks, or driving for long periods of time. The condition seems to affect people most who are of a nervous, emotional, or anxious disposition, or those suffering from excessive stress.

The symptoms of fibromyalgia can vary in intensity, with aches, pains and tenderness usually felt along the spine and back, but can affect other parts of the body including shoulders, neck, chest, and knees. The after effects of this condition can make a sufferer feel completely exhausted, both physically and mentally, then at night getting no release as sleep will be restless, fitful, and very disturbed.
For the best treatment, aromatherapy massage with lavender, chamomile and rosemary can have a calming effect, both on body and mind. You can also use lavender oil in a warm bath to help relief stiffness and pain.

Symptoms of an attack can be reduced by taking Rescue Remedy flower essence. You can purchase this in liquid extract form in small bottles, or in pastille form. These remedies are available from good health food stores and high street chemists. Keep some in your bag or pocket if you suffer frequent attacks.

Partaking in some  stress relieving activities or exercise can be most beneficial for helping to improve the long-term health of fibromyalgia sufferers.  Try taking up regular walking in the fresh air each lunchtime for a bit of stress-relief, and to stretch out your muscles. Especially good for people with office or desk jobs!

Most leisure centre pools have early bird sessions, and you may find you can fit in a swim before work. Or if you have to be at work early, see if the pool runs evening swim sessions you could join after work. This would be great for winding down after a stressful day at work, and can often help you sleep soundly too.

Ever wanted to learn to dance? There is nothing better than learning a new dance, plus gaining all the health benefits of regular exercise along the way. Dance classes are also a great way of making new friends, who can also help you de-stress extend your social circles and put your troubles into perspective.

Check at your local community college to see what adult evening classes they run. You may find taking up a new sport or hobby can greatly relieve your stress, and could even lead to new work opportunities that you may not have considered before. Lots of people have changed careers as a result of learning a new skill or craft at adult education classes.

 

MNewbold is a prolific writer who loves to write about family matters, health and fitness, food and nutrition, alternative therapies, and general well-being.
For a comprehensive guide to manage your back pain by a team of experts in back pain and care, visit http://www.backpaincompendium.com  or www.expertbackpain.weebly.com

Thoughts on fibromyalgia

The more I read about fibromyalgia the sadder I am to realize many people believe it is purely psychological. Saying we don’t know the physical cause so there is none is like saying we know everything about medicine. Not true! We are always learning news things and have more to learn. Also, if you were in pain all the …time and couldn’t do the things you used to you would inevitably make you a little depressed about the situation. Being upset that you’re sick is not the same as being sick because you’re upset.

Upcoming Free Workshops

Tuesday, November 3: Tuesday, November 17

FREE WEIGHT LOSS WORKSHOP

Time: 7:30 PM

Five secrets to permanent weight loss. Learn why diets don’t work, why eating fat doesn’t make you fat, what hormone is out of control in your body, how to reduce chance of breast cancer by 70%, how to regain energy and vitality, what exercise program you should be on, and much, much more.

Cost: Free

Tuesday, December 1 : Tuesday, December 15

WORKSHOP ON DIGESTION

Time: 7:30 PM

Learn how the digestive system works and natural approaches to improve the health of the digestive system.

Acid Reflux, Hiatal Hernias, Ulcers, Irritable Bowel Syndrome, Colitis and Crohns Disease are just a few of the digestive disorders that affect over 61 million Americans each year.

Cost: Free

 All Seminars listed above are held at the Princeton Club Community Room at   14999 W Beloit Rd,  New Berlin WI 53151

Me , Who I Am

I live a pretty hectic life, I am first and foremost a single mum and that is not usually something I share straight up but , I see this journal as a semi blog and they are a part of me, so any man that wants to accept me as a true sub/slave needs to realize I come as a ready made package of 3. My lads are just the best thing I could hold in life. They are gorgeous human beings and they come first in my life.

Secondly I work full time, this keeps me busy , but I have like so many Australian’s a mortgage to pay and kids to put through private education.

*Whispers* : I’m not a breeder slave

Because I have Multiple Sclerosis(MS) and Fibromyalgia(FMS) I cannot “breed” anymore kids, I am although happy with what I have got.

Living with MS and FMS is hard, but what is harder is living with MS and FMS and being a single mother with 2 full of energy young boys.

I am not bound to a wheelchair, but I live with chronic severe pain, because although MS and FMS is treatable it is not curable.

These disease are disabling, but I am not disabled. I am still a very independent woman , I still can surf most days. AND I can still crack a smile from ear to ear. Because despite the cards that have been played, my deck is only getting stronger each day, and I am enjoying it so much more. Life is wonderful.

Fibromyalgia for those who do not know means “Fibro” refers to the fascia or connective tissue, “my” to muscle, and “algia” to pain. Literally FMS means pain in the muscles and tissue.

Multiply Sclerosis or MS is a central nervous system disease. When the protective sheath (myelin) around the nerve fibres in the brain and spinal cord becomes damaged, causing random patches called plaques or lesions. These patches distort and interrupt the messages that are sent along these nerves. ‘Sclerosis’ means scar and the disease is labelled ‘multiple’ because the damage usually occurs at a number of points.

So above all of this , I still can’t see why I can’t enjoy my life. I always seem to say to other people, Remember there is always someone fighting a bigger battle then you! and I believe that even in my situation. MS and FMS I would not wish on my greatest enemy , but I am so glad I have both because now I can educate the rest of the world about these diseases.

Awareness is a good thing in my books.

Do You Have "Fibro Fog?"

The Problem:

Do you know someone who has fibromyalgia?  Have you ever noticed, or heard them complain about problems with their memory?  If so, they may have what has been called “fibro fog.” You see, in the left temporal lobe of the brain is the area responsible for memory, it is called the hippocampus.  In people with fibromyalgia, this area of the brain is not working normally.  In most cases, these people have high levels of cortisol (the stress hormone) in their blood.  Cortisol is released from the adrenal glands which are on top of your kidneys.  Cortisol is an essential hormone for life, but when it’s levels are high for long periods of time, (as often seen in fibromyalgia patients) it is TOXIC to the brain.  It causes neural degeneration, (wasting of the nervous tissue that makes op the brain) and as a result, you lose your ability to think and remember things.

So how do you lower cortisol levels and get the hippocampus working again?

The Solution:

To help improve memory and get the hippocampus working normally again, you need to take a neurological and metabolic approach.  Neurologically, you need to “rebuild” the brain using neurological, brain based therapy (BBT). BBT works, because of recent breakthroughs in the understanding of how the brain works, called neuroplasticity. We offer brain based therapy in our office, and have had great success with fibromyalgia and other types of chronic pain using these treatments.  Metabolically, we have to check blood sugar levels, adrenal function and thyroid function to make sure your chemistry is balanced.  Labs, and salivary panels may need to be ordered, and can be done through our clinic or your primary care physician.  We will analyze your lab results and determine if dietary, supplemental and lifestyle changes need to be made. Using this two-pronged approach, “fibro fog” and fibromyalgia can be treated with success.

Dancing away your pain!

Get your grove on and dance your pain away!

Even imagined yourself belly dancing your pains away? Shaking your hips, flowing with the rhythm and to the beat of the drums, letting yourself dance the pain away!

Well, a recent research study done at the Federal University of São Paulo proves that by simply keeping active, you can improve your quality of life. They wanted to show that belly dancing could be an effective treatment for pain in fibromyalgia patients.

The entire study consisted of 80 females, ½ of which was a control group, ages 18-65. To qualify, all the participants’ course of treatment should of not changed in three years preceding the study.

All the dance students “ took one-hour belly dance classes twice a week for 16 weeks… Each class had a maximum of eight students. The classes were administered by a physiotherapist with eight years of experience in belly dance. Classes began with a warm-up exercise, followed by the predetermined movements for the day, choreography and a cool-down exercise. The participants received a compact disc with music and an exercise book with the history and movements proposed for the program. Beginning in the fourth week, a set sequence of movements in the form of choreography was established for memorization and training at home.” (via)

In order to measure the outcome of the dance program, all the dancers where asked how they felt at three different times during the program. They were questioned before they started, again at 16 weeks, and lastly at 32 weeks. The number of questions the dancers were asked gave the researchers an in depth view on the outcome of the study. Everything was examined in order to have a complete patient profile including; pain levels, physical functionality (aka the 6 minute walk test), and quality of life questionnaires. Some of the quality of life questionnaires included but not limited to the Fibromyalgia Impact Questionnaire, pain, functionality, vitality, mental and emotional states, social aspects, and self-image.

Now, not to bore you with all the facts and figures of all the results, here’s the jest of the study: GET MOVING! No, really folks, seriously the “control group” of dancers slowly progressed on all the quality of life tests. Having said that, an interesting thing happened with the fibromyalgia group of dancers; at the 16-week mark, on most of their testing perimeters, their functionality scales became slightly worse than from were they started. But, not giving up does pay off! By the end of the 32-week course, the functionality scales perimeters went dramatically up for the dancers with fibromyalgia.

What does this all mean? Remember when your Mom would tell you it’s going to get worse before it gets better? That statement is true for when you add an exercise program into your life. Remember to take little steps toward finding a path that is healthy for you. Don’t try to go do an all night dance-a-thon on your first week, but try walking for ten minutes in the morning. Just remember, don’t give up. Keep your body moving. Keep stretching and keep a positive outlook on life.

In my never ending search for more information, I found this great website/ blog on dancing for pain relief! Check it out here-> http://dancingwithpain.com

For more information on the clinical trial please see-> Effectiveness of Dance on Patients With Fibromyalgia

i hurt weird...

One day I kept a journal of every symptom and every pain that I felt. It turned into quite a time consuming project and I discovered that the list of weirdyness that I have ‘learnt to live with’ is an extensive one. And when I say ‘learnt to live with’, what I really mean is ‘learnt to keep to myself’ No-one likes to hear moaning about aches and pains all day long, so I keep it to myself and to be honest I sometimes fear no-one would believe me anyway because some of the weirdyness is just plain, well, weird.

I ended up with quite a list of different types of pains that I experience on a daily basis and wondered if they were a typical representation of Fibromyalgia symptoms or just more mystery m weirdyness… i’m still learning.

I came across (and when i say came across i mean found, although it was rather exciting) this  – The 7 types of Fibromyalgia pain and was astonished to find that our lists were very very similar!

The first three types of pain listed were the clinically defined (ie: your doctor will believe you have them)

• Hyperalgesia – those wacky neurotransmitters amping up the pain reception in our brains
• Allodynia – when the skin hurts to touch and mild pressure causes pain due to central nervous system sensitisation
• Painful Paresthesia – unusual nerve sensations that can feel like crawling, tingling, burning, itching or numbness

The next four were of the authors creation, that is, she named the pains that ail her most. These too were so similar to the pains that I experience – I even had names for them In my head! and I could tell right away from her names the kind of pain she was describing.

• knife in the voodoo doll – (i somewhat less creatively just thought of these as the stabbing pains) fairly self explanatory – it feels like someone is stabbing you in random places throughout the day. Sometimes they are using a knife, other times something very sharp and pointy, something hot, or a spear.
• randomly roving pain – (i used to wonder ‘how can pain be contagious and spread throughout my body?) these pains just don’t make sense. Legs one minute, hands the next, butt, guts, head: they can show up anywhere anytime, unannounced and uninvited.
• sparkler burns – (i think of these as ‘exploding nerve endings’ cause that’s what they feel like) small pin-pricks of pain that happen suddenly and last just a few seconds but can be quite intense. They are not on the inside like the other pains but feel to be right at my nerve endings.
• rattled nerves – (it’s that mystery, spooty-symptom-award-winning thing I had no name for!!) this is when my body becomes physically and emotionally drained, with full on sensory overload. Noises are confusing and too loud, movement makes me nauseas and disoriented, my body aches all over and I want to sleep immediately, my nerves are on edge and small panic attacks strike causing my heart to race, light is unbearable and the only way to feel better is to rest immediately in a dark quiet room. It also helps to talk to someone who can calm me down, soothe my nerves and reassure me. At these times I find it really important to remind myself that this is something physical i’m dealing with -nerve endings and neurotransmitters fricking with my body – because it’s all too easy to think it’s a mental problem and start wondering if i’m going crazy, which in turn amps up the anxiety attack even further. sweet.

These things are so difficult to explain and yes i’m painfully (haha) aware of how whiny they sound but honestly all I can say is that they are both very REAL and very HURTY. I mostly keep to myself what I am feeling, unless it is interfering with my day. I try not to talk about the aches and pains and weirdy feelings but clever people will know something is going on despite my insistence that i am ‘fine’. Some people don’t understand and when I say ‘tired’ they think they know what i mean. When i say ‘hurt’ they think they know too, and when i say ‘i need to sit down’ they think i can wait and don’t understand that no good will come from me being upright if i’m having an attack of intense weirdyness. It’s okay, I don’t blame them for not understanding, it’s a rooted-up thing to try and explain and understand. It just saddens me that I’m alone in it. Alone with feelings that I can’t express, can’t fix and can’t expect anyone to have sympathy or make allowances for.

Pain updates:

After 3 weeks of taking a Magnesium&Calcium supplement each night, I stopped. Trusty is going to be so proud of my scientiffical speriment:) -I stopped taking it for two weeks to see what happened and here are my results (please keep in mind that i suffer brain fog, therefore i forgot that i stopped taking it, only to remember 10 days later causing an aha! moment of realisation;)

1. muscle cramping was back, worse than ever. I had random muscle cramping, some that even did damage to my muscles. Uterus, bowel, legs, arms, feet, hands, my neck had a spasm that it is still recovering from which strained my trapezius muscle on my left side.
2. insomnia also back with a vengeance. Sleep was very difficult to achieve. Very.

I’m back on my supplements now:) and can report a definite improvement. I am getting to sleep more easily though i still sleep lightly and startle easily and my sleep is often non-refreshing. The muscle pains have eased and though it may be coincidental and i realise magnesium is no cure, I really do believe it helps relieve the pain. Plus, magnesium baths are just so yummy:)

In other news, my trapezius is recovering:) though in a very bizarre way – as the muscle pain and cramping eases, the Allodynia pain intensifies and spreads. I am almost at the point now of  phoning my doctor and begging for some neuro-transmitter-blocking-type-poison-medicine, it just hurts.that.much. My neck, shoulder, upper arm, back and front on my left side feel severely sunburnt and bruised. Like, severely. It hurts to touch and having my clothing rub against it is excruciating.

the end. m.

The Enemy Within - Background

I have a long term illness. I have been ill for many years and didn’t know it. If you have patience for my story, please continue reading, otherwise here is your out. I would take it if I could, but I am stuck with it forever. But if you are brave and continue, don’t feel sorry for me. Celebrate, because each day is a gift.

Twelve years ago, I had a few of surgeries, one of which was called a “Bilateral Mitchell’s”. That is a fancy name for a bunionectomy. It hurt like hell, really didn’t fix the problem and it sure didn’t make my feet look pretty. But you live and learn that doctor’s really do not know everything… that is the reason that they practice medicine.

So in the succession of my devolving, I have found that I am latex intolerant. (I really don’t know what they put in that rubber, but it makes me bleed if left on me long enough. Same for band-aids. Come on! Really?) I am allergic to quite a few medications. I have Restless Leg Syndrome. I am Hypoglycemic. And the new one… Fibromyalgia. This is the one that is really bad news and I have obviously suffered with for many years and didn’t know it. And for you naysayers… it is REAL. I hope you never get it.

Rewind. Last Year I had really had enough of my feet hurting so badly that I felt like I couldn’t walk. I had to force myself to get up and face my day. The pain was affecting my hips and back because of the way I had to get moving. I went to an Orthopaedic doctor who got me fitted for orthotics. WHAT A NIGHTMARE!!! I won’t go here. That memory makes me angry and I get ugly. Anyway, They did what they could and finally sent me to a podiatrist. LOVE HIM! Dr. Taylor is the BEST!!! He listened and sent me to a pain management center to schedule a pain conduction test. This was a bad experience. Short of throwing me up against a wall and doing a body cavity check, they treated me like a common criminal. They wanted me to sign a contract signing me over to them. YES! I am NOT kidding! I ended up turning that guy in to the AMA and wrote him a letter telling him I didn’t need a drug dealer. Funny thing is… I never met him. His staff caused the whole problem.  I immediately left that office and told Dr. Taylor that he needed to not send people to this guy. So Dr. Taylor sent me to Dr. Hasan, a Neurologist for this test.

I met Dr. Hasan and we discussed what was going on. He sent me for and MRI for lower lumbar and then we were going to meet back in a couple of weeks and have the conduction test. I took my husband with me and he went back in the room. (I don’t do pain very well, isn’t this ironic?) So, we sit there while Dr. Hasan explains to me that it really isn’t my feet that are my problem, although they are not nifty as far as feet go. The problem are a few bulging discs and quite a few Tarlov cysts, to which I am going to have to be sent tot a Neurosurgeon for possible removal. *GASP!* Then we get on with the conduction test. For those of you that don’t know what a conduction test is, it is a machine that kind of looks like a fancy battery and they stick cables in it and they put  these little stickies on your and clamp the cables to you. Then the doctor plunges a HUGE needle into your muscle and turns on the juice from said machine to see how your nerves take it. Now… I want to remind everyone that I don’t do pain. I help my husbands hand, laid there, gritted my teeth and took it, while tears ran out the sides of my eyes. I never said a word. I never screamed out loud. And when the torture was over, the Dr. said, “I am proud of you. I didn’t think you’d be able to go through it.” His diagnosis was that he thought I had Fibromyalgia. He medicated me with Lyrica and then he then farmed me out to Dr. Katz at Emery Spine Center.

Dr. Katz. Not much to say about his bedside manner other than he is professional. That is fine by me because Dr. House types aren’t my cup of tea. Dr. Katz said that the cysts were inoperable. He also confirmed the Fibromyalgia verdict.He also told me to not look it up on the internet. He said there are a ton of crazy people out there spewing crap about this disease and all I need to know is that it is REAL and that it can be managed.

I then had to find a primary that I could trust to go along with my Endocrinologist, Neurologist, Neurosurgeon/Orthopaedist.  I let my Endocrinologist do the honors and she picked Dr. Ghosh for me. He is AWESOME!!! So is on the same page as all of the other people with regards to me. I even had a flare up (I call them episodes) in his office and was he ever amazed at it. He was so astonished, he called his Rhematoid Dr. friend in to witness it. I have no shame. Come on in…. Enjoy me perform!

So here I am, months and month later. I have had my share of changing meds due to ever increasing dosages and not being able to handle the higher dosages or Drs. trying the latest greatest thing and me puking my brains out because well… I can’t tolerate the chemicals. I have even gone to the extreme of having facet joint injections in my lower back to try to eliminate some of this hell which is my life. Hello… didn’t work. I will never do that again. And now you are up to date as well… and this is the condensed version.

- Gigi

The End of a Short Trip; the Beginning of a Lifelong Odyssey

This will be my last blog on the road before I arrive back in the States after a long day of travel tomorrow. Strangely, it doesn’t feel like the end at all, only an interlude before my next adventure. Travel is addictive and I am completely intoxicated. I think it will be a tough adjustment to go from weeks of new adventures, art, culture, music, and food to being back at home in my normal routine. I warn all my loved ones, I may experience a tough withdrawal!

I savored my last day in Vienna. A couple hours in the Kunstgeschichte (Art History) Museum, browsing the rooms full of Titians, Rubens, and Rembrandts. I was thrilled to find a room full of the Northern Flemish artist Peter Brueghel the Elder. He gives us a peek into the everyday life of Medieval Europe: the changing seasons, festivals, and daily life for the peasants. So much detail in every scene. Usually you find one or two Brueghels in a museum, so an entire room was a treat! I also discovered a room full of the Spanish artist Diego Velasquez. In my university days as an art history minor, I spent an entire term researching and writing about the portraiture of Velasquez. To see in person the very portraits I studied so intimately – let us just say the slides did not do them justice.

The afternoon was for wandering and saying goodbye to Vienna. I stumbled across a park called the Augarten, hiding behind a wall in the Leopoldstadt neighborhood just north of the Ringstrasse. The park itself is brown and slumbering already for the winter, but it was still full of life as people jogged, biked, and walked their dogs through the avenues of evergreens. The big surprise is that over this tranquil scene looms two giant flakstürme, or flak towers, from World War 2. Huge monstrosities of concrete. Forlorn and menacing. They are now stripped of all their equipment and home to flocks of birds. Completely at odds with the entire mood of the park and a somber reminder of the not-so-distant horrors this city has experienced.

One last afternoon at my favorite coffeehouse (yes, I already have a favorite!), the Cafe Tirolerhof. One last melange. And then off into the sunset (or I suppose technically sunrise) on tomorrow’s flight back to reality. May I never recover from the seductiveness of travel.

Muscles Do Not Stretch. Huh? That’s Right, Muscles Do Not Stretch.

It might feel like it, but that’s not what’s actually happening. A skeletal muscle is attached to a bone at both ends and always stays attached (unless something really bad happens). The overall design length remains roughly constant as it elongates and contracts.

If you bend at the waist to touch your toes and your hamstrings and butt are “stiff,” it is not that the muscles are shorter than they were last week. Here’s what’s happening: What we regard as stretching is an important aspect of the body’s fail-safe system that protects it from events that would restrict the ability to move. The muscles are telling us that they are approaching the limit of what they regard as normal motion, beyond which damage might be done.

Get Moving and Read the Rest of This Blog – Thanks Egoscue Orange County

If You Have Ever Had Fibro-Fog, You Will Get A Kick Out Of This!

Fibro Fog Funnies -- Remember To Laugh

Two friends with fibromyalgia sat down for lunch.

One looked at the other and said, “Please don’t get mad at me. . . I know we’ve been friends for a long time, but I just can’t think of your name! I’ve thought and thought, but I can’t remember it. Please tell me what your name is.”

Her friend glared at her.

For at least three minutes she just stared with a blank expression.

Finally she said, “How soon do you need to know?”

http://restministries.com/?p=973

Understanding Egoscue Method Therapy (Synopsis)

The Egoscue Method recognizes that fundamental anatomical, physiological and biomechanical principles govern the human musculoskeletal system. With only very rare exceptions, each person is born with certain core design characteristics that serve as a strong, resilient and efficient operational platform. By using a blueprint of this extraordinary platform as a guide, the goal of the Method is to eliminate disparities that can occur when injuries or negative lifestyle conditions affect the way the musculoskeletal system actually moves as opposed to its underlying structural parameters. By restoring muscular balance, skeletal alignment and the harmonious interplay of internal systems, the body takes a quantum leap in healing power, stamina and physical capability. The Egoscue Method is not a form of treatment that chases after short term, symptomatic relief. Rather, symptoms provide a common sense starting point, a working frame of reference based on each individual’s unique combination of strengths and limitations. Our primary objective applies to everyone we seek to help—to eliminate musculoskeletal system disparities and the resulting postural dysfunctions that interfere with pain-free living.

Read the Rest of Downtown San Diego’s Blog

Will Medical Marijuana come to North Carolina?

Medical marijuana: Just what the doctor ordered for North Carolina?

Gaston Gazette

July 04, 2009 10:32 PM

Corey Friedman

Prescription painkillers made her retch. Muscle relaxants ravaged her liver. So Jean Marlowe put down her pills and rolled a joint.

“I tried marijuana, and in five minutes, my stomach stopped shaking for the first time in five years,” said Marlowe, who has used marijuana as medicine since a doctor recommended the drug in 1990. “It really does work.”

The founder and executive director of the North Carolina Cannabis Patients’ Network, Marlowe is asking state lawmakers to pass a bill legalizing medical marijuana use.  The bill is currently in the House of Representatives’ Health Committee, and two of  Gaston County’s three House delegates who serve on the committee have indicated they would likely vote against it.

House Bill 1380, the N.C. Medical Marijuana Act, would allow patients access to medical-grade cannabis with a signed statement from a physician. Growers and dispensaries would be licensed and regulated by the state Department of Health and Human Services.

“All of these people who have been kindly, caringly, lovingly sticking their necks out to grow a little bit of high-quality medication for patients could actually come forward and get a license and be legal,” Marlowe said.

North Carolina would become the 15th state to legalize medical marijuana and would see estimated annual tax revenues of $60 million within four years of the bill’s passage.

Reps. Wil Neumann and Pearl Burris Floyd said the U.S. Food and Drug Administration would have to approve marijuana for medical use before they would consider writing an exception into the state’s cannabis ban.

“The FDA needs to make the determination of whether it has medical benefits or not,” Neumann said. “I would not favor it until the FDA comes out and wants it properly cultivated and harvested for medicinal properties.”

Marijuana faces a political minefield in the fight for federal recognition. The FDA discounted its potential medical application in a 2006 review, contradicting a 1999 study from the National Academy of Sciences’ Institute of Medicine that found it “moderately well suited” for treating certain conditions.

The U.S. Drug Enforcement Administration calls marijuana the nation’s most abused illicit drug and classifies it as a Schedule I controlled substance, indicating “no currently accepted medical use in treatment in the United States.”

Floyd challenges those who support medical marijuana to seek FDA approval.

“It would be nearly impossible to regulate an illegal recreational drug even with a good doctor’s prescription,” she said in an e-mail. “If it is such a great idea and an untapped source of revenue, then it would meet the rigors of the FDA approval process.”

Rep. William A. Current said he is “skeptical” of medical marijuana but has not studied the issue enough to have an informed opinion.

“I just haven’t heard enough to reach any kind of decision on it, but from what I know, I would be hesitant to open this door unless we had really tight controls,” he said.

Current, a private-practice dentist, said he would rely more on medical and scientific evidence than personal feelings when deciding which way to vote.

“I think the medical community is going to have to step up on this issue and help make this decision,” he said. “People in political realms are not equipped to make these decisions without their guidance.”

Marijuana as medicine

Marijuana is “moderately well-suited for particular conditions” including nausea and vomiting from cancer patients’ chemotherapy and the rapid loss of body weight known as “wasting” in AIDS patients, according to the 1999 Institute of Medicine study, “Marijuana and Medicine: Assessing the Science Base.”

Long lists of side effects accompany many prescription drugs, and overdosing can be fatal. Advocates say by comparison, cannabis offers a safe alternative to pharmaceuticals.

“There are no side effects that are harmful,” Marlowe said. “There has been over 5,000 years of documented medical use of cannabis, and not a single death has ever occurred.”

Marlowe said a user would have to smoke 1,500 pounds of marijuana in 15 minutes – a physical impossibility – to ingest a toxic dose.

“There is no such thing as a lethal dose,” she said.

Muscle relaxants can weaken patients by gnawing away at their muscle tissue, Marlowe said, but cannabis allows them to maintain their strength.

“Almost every one of the muscle relaxers helps with muscle spasms, but they also atrophy the muscle over a period of time,” she said. “One unique property of cannabis is it can stop smooth muscle spasms while maintaining the muscle mass.”

Marijuana increases users’ heart rates and may decrease blood pressure, according to a 2001 American Medical Association report. It can impair short-term memory, motor skills, reaction time and information processing skills. Chronic users can experience withdrawal symptoms, but doctors conclude that cannabis is less addictive than alcohol and tobacco products.

“Although some marijuana users develop dependence, they appear to be less likely to do so than users of alcohol and nicotine, and the abstinence syndrome is less severe,” the AMA states in Report Six of the Council on Scientific Affairs.

In the 2001 report, AMA doctors encouraged researchers to develop a smoke-free inhaled delivery system for delta-9-tetrahydrocannabinol, or THC, the primary psychoactive substance in marijuana.

“Like tobacco, chronic marijuana smoking is associated with lung damage, increased symptoms of chronic bronchitis, and possibly increased risk of lung cancer,” the report states.

Marlowe refutes the belief that marijuana is a gateway drug that leads users to try more harmful substances. She points to members of the N.C. Cannabis Patients’ Network who were formerly prescribed heavy-duty painkillers.

“Not only have none of them gone to hard drugs, they’ve all come off of narcotics,” she said. “Marijuana is not a gateway drug. The most recognizable, easiest gateway drug that most people run into is tobacco.”

A continuing crusade

An institute in North Carolina’s Research Triangle Park processes and distributes medical marijuana to select participants in a nationwide federal study, according to the text of HB 1380. Meanwhile, the 386 patients of the N.C. Cannabis Patients’ Network cannot legally obtain the drug themselves.

“Our oldest patient is an 86-year-old World War II veteran who suffered nerve damage to his feet from the heavy packs he carried during the war,” Marlowe said. “Now he’s suffering, and he has to be considered a criminal.”

Marlowe, too, has been considered a criminal for her medical use of marijuana. The Mill Spring resident said she uses the drug to treat her numerous medical conditions, including muscular dystrophy, rheumatoid arthritis and degenerative disc disease.

She was arrested in 1998 when U.S. Customs agents intercepted a package of cannabis she ordered from a farm in Switzerland.

A judge sentenced her to six months on house arrest and two years of probation, but Marlowe was soon convicted of a probation violation because of her continued marijuana use.

She spent 10 months in a federal prison camp in West Virginia.

“It’s been a battle,” she said. “I’ve been doing this for 17 years.”

HB 1380’s future is uncertain. Health Committee members did not vote on the bill after a June 18 hearing, which included testimony from Marlowe and other NCCPN patients.

The bill’s primary sponsor, Rep. Earl Jones (D-Guilford), said he will seek a vote to move the bill out of committee without prejudice. The Health Committee would not vote on the bill’s merits, but majority approval would allow it to proceed to the House Finance Committee.

“It’s just one step closer to a full debate on the floor, and that’s what I really desire more than anything,” Jones said. “Every time the public hears more about this, many myths are dispelled, and we see an increase in support.”

Jones also filed a companion bill, HB 1383, which proposes a referendum on medical marijuana. The mechanism for licensing growers and dispensaries is identical to the one proposed in HB 1380.

“There are those who continue to feel some trepidation about it because it’s a political liability,” he said. “One option would be to allow the citizens of the state of North Carolina to vote on it.”

You can reach Corey Friedman at 704-869-1828.

MAKING INROADS

Since 1996, 14 states have passed laws allowing medical use of marijuana:

- Alaska
- California
- Colorado
- Hawaii
- Maine
- Maryland
- Michigan
- Montana
- Nevada
- New Mexico
- Oregon
- Rhode Island
- Vermont
- Washington

SOURCE: National Organization for the Reform of Marijuana Laws

Big win.

Brownies! And not a moment too soon.

Went big shopping yesterday and got a bunch of different flours to try and make my own baking mix.  Or at least mess around with baking gluten, corn and soy free.  Before I tell you about the brownies, though, I’ve got to talk about shopping.

For the last 4+ years I’ve had months on end when driving the car was too much.  I was in pain, on medication, brain fogged beyond stupid.  And driving was painful, taxing and dangerous.  Fast forward to yesterday when I took the van and went shopping; not one store but two!  Had well thought out lists in my pocket for each store (shocking) and knew how to get from one place to another.  (Since I’ve lived in Spokane my entire life, it was pretty confusing after I was diagnosed when I started having trouble figuring out how to go somewhere and/or getting all turned around and lost.  Spokane is not Metropolis.)

Anyway…

I zipped through my shopping and arrived home to find Kevin fast asleep in a nap.  So I brought in all the groceries.  If you’ve never had fibromyalgia or some equally baffling syndrome-ish disease you probably can’t feel the import of that phrase.  It was eight trips back and forth from the car to the kitchen.  Oh yeah, I counted!!  I was triumphant.

PLUS, you’ll never guess.  It was a rainy day!  I mean, come on…really?  I felt like I finished the Fibromite Iron Man.

To reward myself for just being so damn cool, I made another attempt at brownies.  I started with a recipe from Great Gluten-Free Baking by Louise Blair.  I tweaked it for my own taste and ingredients.  I think I’ve changed it enough to reprint it here without violating Ms Blair’s copyright privileges.  If she sues me, I’ll let you know.

Nummy Nutty Brownies

• 3 oz unsweetened chocolate.  I used plain baker’s chocolate which may or may not have been gluten free.  I was desperate.
• 7 T butter or marg.  I used Smart Balance which is soyish but vegan.
• 1 c organic brown sugar.  I didn’t pack it down in the cup because even though I love brownies I don’t like them sickly sweet.
• 2 eggs, beaten.  Sorry all my vegan readers.
• 1/2 t vanilla
• 1/2 c ground almonds (mmmmm…)
• 2 T brown rice flour
• 1 1/2 t sorghum flour
• 1/2 c chopped pecans
• 1/2 c chopped walnuts

Preheat the oven to 350 degrees F.  Butter a 11 x 7 inch pan.  (NB: I don’t think my pan was the right size so watch your cooking time.)  After I buttered the pan, I dusted it with dutch cocoa instead of flour.  I don’t know if it makes a difference but it made me feel all fancy!

Melt the chocolate (I used the microwave) and then the butter/marg.  Stir that all smooth and pretty.  Stir in the rest of the ingredients gently and lovingly.

Pour the batter into your pan and stick it in the oven for 30 minutes or until done.  I read somewhere that with gluten-free brownies it’s better to err on the side of underdone and chewy rather than way done and crumbly.

Cool, cut and enjoy!

Chronic Pain and Intimacy

It is true that chronic pain may take away a lot of things in life but the last thing to go hopefully is your intimacy sexual or otherwise with your partner. In the world of ther chronic pain sufferer the simple act of sleeping in the same bed, laying or sitting close on the couch can become a luxury. So the goal is to communicate and met in the middle. Know that anxiety may be on the forefront as the fear of any added pain or stress to be certain way can make things more on edge. So take it slow remember that you care about your partner and you are building trust. Try holding hands and looking into each others eyes. Also it will be important for your partner to be educated about your pain and how to be mindful of how to support you. So get started by getting those fears out of the way. Maybe you could each state one fear and the move forward. You might find that you both fear the same thing. Make it playful, sensual and safe,

How does your foot taste now?

Two things are infinite:
the universe and human stupidity;
and I’m not sure about the universe.
~ Albert Einstein

Forgive me… I just feel the need to rant for a minute about the stupidity of people when it comes to dealing with chronic illness. I say stupidity instead of ignorance because there is a HUGE difference.

Ignorance is genuinely not knowing something. If you don’t know about something then it is your responsibility to seek knowledge and/or understanding before you speak about it or on behalf of it.

Stupidity is just speaking about something without the knowledge or caring to understand.

Sooo that being said to all you “normals” out there that have chosen to act stupidly in my presence when it comes to my illnesses and/or diseases, don’t. Just don’t say a damn word. You don’t know me, you don’t know my coping mechanisms, abilities, or tolerance levels.
Since I was a teen I was on the go from the time my feet hit the floor early in the morning until almost midnight. I went to high school, I worked since 14, volunteered as a tutor, AND took college classes.

I started nursing school in 2002 as a newly divorced mother of two kids. I worked, went to college, and took care of my kids. During the first year of college I had 3 major surgeries within 5 months all done on a Friday and I was back to class on Monday. I was also homeless at one point during that time.

NOW, talk to me about “staying determined”. Now, even with 3 diseases I constantly battle every minute of the day I am the Executive Director & Treasurer of a non-profit charity that on some days I have to run from my bed. Determined? Maybe not to some people, but I AM determined to make everyone who judges me for a second to feel as stupidly as you act.

The lesson here? Know what the hell you’re talking about before you question my determination and forgive me if I might wish for a break from the external forces that causes me so much pain from time to time. (Like the weather) I didn’t mean to disturb you!

Nordic Walking Poles Help Seniors Get Active at 2009 Senior EmPower Day

REAL Nordic Walking Poles From WWW.SKIWALKING.COM and the American Nordic Walking System

The 2009 Senior EmPower Day provided seniors from across Northern Michigan the opportunity to test drive real Nordic Walking Poles from SKIWALKING.COM and the American Nordic Walking System, hear from a variety of informative speakers and learn from other event sponsors and exhibitors.

Nordic Walking definitely helped to get event participants out walking – including those that utilize canes and walkers. The most enthusiastic group tested the poles for about one-mile. Many climbed the steep hill above the parking lot and everyone was shocked at how the poles made climbing hills easier. When Nordic Walking poles are sized correctly and the right technique is used, the biomechanics are such that balance, stability, posture and gait are radically improved. The perfect length poles also help to radically reduce the stress to the shins, knees, hips and back.

Nordic Walking’s winning combination of improved posture, a unique 4-Wheel-Drive type action and shock absorbing benefits – helping many individuals to walk comfortably again. Nordic Walking Poles are helping individuals with balance issues, knee issues or new knees, hip issues or new hips, back issues (including those with rods in their back), weight issues, multiple sclerosis (MS), parkinson’s (PD), neuropathy, arthritis, bursitis, scoliosis, lumbar stenosis, fibromyalgia, post polio, osteoporosis, stroke recovery, cancer recovery and other limitations to walking. Nordic Walking poles are helping thousands of Americans get off the couch, successfully get outside, start walking safely and effectively launch much needed walking campaigns.

Here is what Mike told us after taking his new poles out for his first solo test drive: “Friday evening I walked nearly 2 miles with them WITHOUT PAIN! I was so, so pleased – just tickled me to death. Can’t say enough positive about them. Now I’m trying to find my pedometer, as I have made a covenant with myself regarding 10 miles per week. I am so looking forward to achieving it!”

Some of the participants commented that they had twist-locking poles at home and most reported problems with their twist-locking poles. They also commented on the comfort and effectiveness of the straps included with all of our SWIX and EXEL Nordic Walking Poles – patented by the Salomon Ski Company.

It is a hassle for me to travel with so many different sizes of quality one-piece poles, but they are safer, lighter and much more durable than cheap twist-lock and flip-lock poles from China. I have been receiving a record number of calls from Nordic Walking Instructors that report problems with their twist-lock poles and the embarrassment of trying to teach a class when their twist-locks don’t cooperate.

At SKIWALKING.COM and The American Nordic Walking System we carry 14 standard lengths of Nordic Walking Poles, plus we can do custom fitting for extra tall individuals – 6’ 7″ and above. One-piece poles prove to be safer, lighter and much more durable than cheap twist-lock or flip-lock adjustable length/telescoping/collapsible poles.

When looking for quality Nordic Walking Poles be sure to zero in on the correct length, look for poles with Salomon patented Nordic Walking Straps and avoid cheap twist-lock/flip-lock poles.

Walking with poles is the best!

fibromyalgia and my magic bike

blogging about my magic bike, fibromyalgia, pain, the love of a dog and magical memories.

My first blog entry…

magic bike

My first blog, here or anywhere!  It is a Monday, so I guess a good day to begin a blog.

I could talk about pain.  I woke up in so much today that it was two hours later; after having taken my medication and drinking a few cups of coffee, that the shock hit me mentally and emotionally.

I was standing in my wooded yard having the coffee when I felt a burst of emotions and quickly came tears.  It didn’t last long, but it was remembering the pain I’d felt when I woke up this morning that was the source of the outburst.  Post-pain-shock or something.

I have fibromyalgia.

A Rheumatologist and fibromyalgia research doctor, whom I must say I’m very glad to have had the opportunity to meet,  is the doctor who gave me my third or fourth, and I guess official diagnosis of fibromyalgia in 2006.

This doctor says that Chronic Fatigue Syndrome, which I have, is the same thing as fibromyalgia.  He calls fibromyalgia (Central Sensitivity Syndrome,) CSS.

I believe anyone who truly has fibromyalgia/chronic fatigue knows pain as well as just about anyone.  Certainly we are high on the list of people who know what it is like to endure severe pain — fatigue of the body and brain, and — to keep on going!  Which takes me to another subject to write about:  My Magic Bike.

I bought a magic bike. It’s magic because when I got on it I felt free.  It reminded me of me.  The me I have forgotten to keep up with.

I remembered what it had been like to ride my first ten-speed bicycle, which  my dad gave me for my 13th birthday.  I used to ride it  for miles and miles.  We lived in a small rural town with plenty of country roads to ride on.

That bike took me all sorts of places, rivers, communities I’d only heard about but mostly I rode where there were pastures and a few houses along side of the country roads.  We didn’t wear helmets back then.  I’d hold my hands up high and ride down curvy hills all the way like that.  That was my freedom bike.  Truly, my wheels.

My magic bike I have now was special from the time I thought about it in my head — but once I ordered it online is when the magic really began!

I made a list of things I needed for my magic bike while I waited for them to build it.  Then I made a list of things I didn’t need.  What would be the most unnecessary thing I wondered, that a bike shop has to offer.  I suspected that the item might be the exact thing I wanted.  I asked one of the young men working at the shop what he thought this item might be and he answered with just what I wanted:  Pink and white handle-bar streamers!

The streamers seemed to be like a starter for the bike’s magic power, but it still needed something.  I took it in for a check-up and knew pretty much what I wanted. A bell! I asked the young man where the bells were and of course they were beside the streamers!  I found the coolest bell ever!  A Jelly Bell I think it is called.  I knew it was the right bell for my little magic bike!

My 25 year old son and I rode our bikes last night by the light of the moon, and–by the light of my little Flea LED light, which is totally awesome and I think brighter than the lights on my car!

“This is nice isn’t it Mom,” my son said as we rode along the quiet road, me on my magic bike and him on his regular but cool blue bike.

“Yeah… this is nice,” and I knew it was one of those special moments in time to remember.

I am grateful for the moment and now,

for my magical memory.

by dogkisses,

my first blog, original post on August 10th, 2009

Building a Support Network for Fibromyalgia

If you are dealing with a long-term illness, you have seen MANY doctors over the years. After a while, that number narrows down to become a focused team of health care professionals. Your team might consist of the following; a general physician, a pain management specialist, a neurologist, an endocrinologist, an acupuncturist, a massage therapist, a physiologist, a physical therapist, and the list of “specialists ” could go on and on. Each of us builds our medical support team differently based upon our needs.

Using this same model of a support system, I have a team of friends to help me out. A support team of friends can help you through your toughest challenges. Just like with a medical support team, everyone’s support team is different, they can help you when you do not know how to help yourself. However, a friend support team’s roles are never set in stone. Friends can help you with a bit of laughter, when you need someone to hold your hand during medical procedures, when you need encouragement, when you need a shoulder to cry on, when you need someone to bounce ideas off-of, or just when you want companionship during a “flare-up”. An organized support team becomes an essential tool to help you stay positive, healthy, and on top of your pain.

Developing and managing a strong support system is not an easy task. There are many issues that come up which make it difficult for your friends, and even your family members to be part of your support system. There is a huge challenge of keeping everyone informed about your ever-changing health condition. This challenge is well worth it though, because the friend support system comes in handy when you need it the most!

Honesty between you and your supporters is a priority. You need to be able to tell your friends what you need from them. And in turn, they need to be able to say what they can and cannot do for you. The best advice I was ever given was never be afraid to say, “No, you can’t do something”, especially to a friend. Make a pact with your supporters that they will never agree to do something unless they really want to so it for you. They should never feel burdened by you, and you the same by them. That way when you call asking for help, you know they are truly helping you because they want to, not out of pity. It seems strange to ask this of you dearest friends. But, by making this pact, it seems to help rebuild your self-esteem, especially after that sixth late night “help” call.

There are a number of ways to establish your own support team. I name mine based on what function or situation I need from that friend. I write down in my journal the following functions and next to each, I write a couple of friends’ names. I write down a few names next to each function to insure I always have someone to call if I need them, and I never exhaust my resources.

Nurse Betty: a friend to hold your hand while they take yet another sample of blood

Pal MD: a friend to call to discuss health care choices

Iron man: physical help needed, remember not to over exert yourself

Class Clown: a good chuckle cures all ails!

Let it all hang out: vent or whine about this and that, call when things are tough

Gossip Gal: a pal to chat with when you just need a friend

This side up: Flare-up = level 10+, I call this friend when my pain gets so bad I do not know how or what to make it better.

Smell the roses: You have become a hermit. Cobwebs have grown around your front door. Call this friend and get out and about.

Positive reinforcement: Life is great! You are wonderful! Call this friend and everything will be better!

Look at the friend support team like a grocery list. I tend to have about 3-5 people at a time on my support team. Each friend’s (and/or family’s) role can change over time. Some friends hold multiple roles; others drift in or out of your support team. And some of your friends might not be able to be part of your support system, which is also perfectly ok.

Think about building your support team when you are not overly tired or in pain. Make notes on what qualities your friends have that help you out the most. For example, my mother is the person I call to “Let it all hang out”. Because she also has Fibromyalgia, I can vent to her about ongoing medical bills and medication conflicts.
How to keep a strong support team:
Just has we become exhausted of dealing with our illness; our friends also become tired of hearing about it. Learn to rotate your support team. Do not vent to the same friend all the time! There is more to life than blood tests and trigger point injections.

Rotate who you call each pain flare-up. If you call the same person each pain flare-up, eventually, that person will become exhausted of the flare-ups just as much as you.

Look outside your own circle of friends for venting or medical advice. There are plenty of online help groups where many patients are going through the same medical issues. Like face-to-face discussion; reach out and find a support group in your area. The National Fibromyalgia Association is a great resource to locate a group.

Educate your support team. Fibro- My –Al- gee-a what? Help others understand what you are going through by giving them resources to read at their own pace. Some people do not want to know everything, others have so many questions it is arduous. Here are some websites that help family and friends understand more about FM:
www.fmaware.org
Mayo Clinic

Keep them close:

Remember, you will need someone from your support team the most when you can think the least. Keep your support team’s contact information handy; put their contact information on speed dial, create a Facebook group, paint their Twitter accounts on your ceiling, whatever you need to do to help you find them the easiest way possible.