Blog Archives
The Chosen People
When I made my video ‘Why Me?’, it was supposed to be a tongue-in-cheek title.
Basically, as many people pointed out, FM can happen to anyone – so why not me?
At the age of 34, I embarked on a six-year adventure to study law – my friends wondered why I would do it.
At 40, I graduated, was admitted; but was only able to practice for one month – why me? I asked.
In February of this year, I discovered Facebook pages (rather than personal sites) and I quickly became addicted – my friends wonder why I would do it.
At about the same time, I discovered the wonderful world of blogging; and in March, I wrote my first blog post. Whoa! Have I come a long way since then. But my friends wonder why I do it.
I cannot even work part-time; I cannot drive more than 10 kilometres; I cannot participate in my favourite activity – retail therapy; I am lucky if I can read one chapter in a book; but, worse than all of that, I experience excruciating pain, forget things most of the time and almost always have a headache. Some of my ‘friends’ think that it is all in my head, others think that I am just being lazy… yes, I am misunderstood. I wonder why my friends do that!
LIGHT BULB MOMENT – I have the answers:
I can research most topics as I studied so much. I can ask questions (no matter how silly) as I learnt that there are NO silly questions – just silly people who don’t ask questions. I can create visual material to raise awareness about FM as I like to think that I am a creative person. I can reach out to millions suffering from FM, force their families and friends to accept and understand them as I have already established a blog, a Facebook page, a Twitter personality and a Pinterest persona. I have a background in hospitality so I will get my International Fibromyalgia Awareness Day Symposium/Luncheon off the ground – even if I have to raise the money myself (one bracelet at a time!)
I am one of the chosen ones – I can combine all my experience to raise awareness of our condition; and touch the lives of many.
If I did not have FM, would I have ever thought of doing so? Would I have even heard of the condition?
So, I know why I have FM. As one of the chosen, why do YOU have FM?
The First Time
Many of us think we’re stuck: nothing is going to change, this is it, this is my life!
But why? There are still so many things we can do – and, for those of us stuck at home, perhaps a new opportunity to try something new.
It’s halfway through the year and here’s what I have done for the time:
18 January 2012 – Attended my first burlesque performance
2 February 2012 – Attended my first hydrotherapy class
27 February 2012 – Started my first Facebook page
6 March 2012 – Attended my first Bowen therapy treatment
13 March 2012 – Went to the Doggy beach for the first time
16 March 2012 – Wrote my first Blog post
28 March 2012 – Made my first video
1 April 2012 – Opened my first Cafepress store
4 April 2012 – Attended my first Pilates session
12 April 2012 – Attended my first Yoga session
18 April 2012 – Attended my first Tai Chi class
22 April 2012 – Z sleeps over for the first time
25 May 2012 – Produced my first cartoon character (FibroModem Girl)
1 June 2012 – Published my first newsletter
1 June 2012 – Attended my first Shaitsu treatment
7 June 2012 – Attended my first reflexology session
***NB – dates are from my own diary and may be incorrect as compared to blog posts.
Now I’m not trying to toot my own horn here – what I am trying to do is inspire you into trying something new. It can be absolutely anything – somewhere in all of that, I tried to make vegetable muffins for the first time – massive failure! So you could try baking, meditating, reading a new author, etc.
So tell me, when was the last time you did something new? And what was it?
Related articles
- Moving Meditation (fibromodem.wordpress.com)
- Tai Chi Relieves Fibromyalgia (calmchicago.org)
Staying Aware…
Many of you know that I am working hard on raising awareness of fibromyalgia so there has been a lot happening both here and on my Facebook page.
This post is just to keep you up to date:
Preferred Doctors List
Some of us have been lucky enough to find health practitioners that are helpful and understanding of our condition – some of us have not.
I have started a new resource on this site (accessible from the top menu) of a list of preferred doctors. Doctors will be added to this list via your recommendations. If your fabulous doctor is not there, please email me at fibromodem@hotmail.com so I can update the list.
LIVING WELL WITH FIBROMYALGIA e-magazine
Due to my over-excitement and lots of interest, my little newsletter is now a magazine. It will be published quarterly and sent directly to your InBox – but only if you have subscribed. To subscribe, comment or contribute, please email fibromodem@bigpond.com. The next issue has the theme of PAIN – here is an exclusive sneak peek of the cover.
The REAL Fibromyalgia Awareness Video
I made a video starring 81 different people who suffer with FM – they don’t look any different to the ‘normals’ – to increase awareness about our condition. This video is making the rounds within the FM community (which is very nice) but FM patients are already aware of the condition.
I would like others to become aware of this condition. That’s what Fibromyalgia Awareness is all about. So, please watch my video and then, if you want to, share it on your Facebook page, embed it on your blog, email it to friends but please just get it out there.
The link to the video is http://youtu.be/ACTl76rmG88; and the embedding code is <iframe width=”420″ height=”315″ src=”http://www.youtube.com/embed/ACTl76rmG88″ frameborder=”0″ allowfullscreen>
Once again, we are trying to convince Google to honour International Awareness day for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Multiple Chemical Sensitivities (MCS) and Fibromyalgia (FM) Day.
Please sign the online petition and/or LIKEing and SHAREing the new Facebook page http://www.facebook.com/GoogleDoodle4May12th
Closer to the date, we will inundate them with personal emails!
I 
have spoken alot about starting a charity – it seems that it takes a little more money than I have at the moment…so, having found some wonderful awareness products, I have opened a tiny shop. Currently, I only have two products (I had to pre-pay for this stock) but when I have paid my credit card back for my initial outlay, I will be able to add some more of the beautiful things that I have found.
Unlike the Cafepress store, and because stock is prepaid, more of the price that you pay will go towards Fibromyalgia Awareness. So, are you supporting the cause?
So, I think that’s everything – have you gotten involved, too?
Related articles
- Starting Early – International Awareness day for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Multiple Chemical Sensitivities (MCS) and Fibromyalgia (FM) Day (fibromodem.wordpress.com)
- Please – International Awareness day for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Multiple Chemical Sensitivities (MCS) and Fibromyalgia (FM) (fibromodem.wordpress.com)
- Happy FibroMAGIC Awareness Day (fibromodem.wordpress.com)
NOW!
I am hoping that by writing this down, I will feel better.
I feel like Humpty Dumpty, that at any moment, I am going to fall and break into a million pieces.
As you may know, I am looking into starting my own charity – the initial aim of which is to spread awareness (of course!) and to help FM sufferers to become actively engaged in their own recovery, by giving them the opportunity and financial resources to assist them in rebalancing the systems of their bodies. There is a hell of a lot more research and planning (not to mention, money) required to start this project than I ever thought possible. I found a great site with the most helpful advice, which I am trying to print out (I prefer hard copy for reading long pieces). So far, I’ve killed 2 printers, used all the ink from another printer and produced about half a ream of reading material. That’s enough to stress me out – I’m having lots of trouble with reading for long periods of time (and this used to be my favourite past-time).
I think, from my initial research, that I have to apply to be incorporated and have at least 5 members. Then I have to apply for DGR status – which allows people to give tax-deductible donations. Then I have to start applying for fund-raising licenses. I learnt all of this from a friend, who has sent me on a net search of particular sites that would, prospectively, be good models for me to follow. Of course, I, being me, have to do that NOW!
All I want to do is design a new website and start fund-raising. I have a great idea for an annual event (which could be adopted world-wide), which I can’t tell you about because; since I published my desire for photos for my REAL video, three other photo videos have been produced by other groups. It may just be coincidental but I think this next idea is fabulous (yes! I say this myself) and I don’t want to share it; I found a wonderful site to source purple ribbon and butterfly merchandise which I could sell; the massage school wants to have a fund-raising day for my charity (except I don’t have one yet); and, there’s my Fibromyalgia Awareness Day Symposium which I would like to start looking into. And, I want to do it NOW!
Today was the last day for photos to be submitted for my REAL video, so I need to complete production. I am going to have to give up on my Johnny Cash song as Universal Music, obviously, does not think I am an important enough priority; I will have to find some royalty free music to use, as I would really like this video to be promoted and distributed throughout the FM community, and I would prefer not to be sued for breaching copyright laws. So, I have to complete it NOW!
Although the next issue of LIVING WELL with FIBROMYALGIA is not published until September 1st, I keep returning to my draft and playing with things. I can’t just leave it alone until the new contributions come in. I must have it ready NOW!
I’ve been reading my blog entries and finding them relatively boring and staid, so I need to find new sources of inspiration before I bore you all to death and have no readers. Guess what? I have to do it NOW!
I am finding it impossible to keep up to date with what is happening on other Facebook sites (you can almost forget about other people’s blogs!) but I know that there is so much information out there that is interesting, thought-provoking and, to me, necessary to read. And, I want to read it all NOW!
I have a dirty washing basket full of all my favourite clothes waiting to be washed NOW but that would mean that I have to take the clean load out of the washing machine, which would mean that I have to take the other load of stuff out of the dryer first and that would mean that I have to put the stuff away. That’s something I don’t want to do now, but probably should.
My brother just handed me a contract, which he would like me to peruse, from his bank regarding his loan for the house he is going to build (remember the previous contract that he gave me to look at?) – that would be the house contract that he is signing on Wednesday. And that would be the contract that I spent 3 days reading and taking notes on, so he would be treated fairly, without charging him for (of course). And that would be the contract that he didn’t bother to tell me that he has decided to sign. I feel affronted – it would be different if I was just his lawyer but I’m his sister, too. It would just be very nice to know.
He gave me this contract at my auntie’s place, where we (Mommy, Henry, Z, Dave, Naomi and two other people I didn’t know) were visiting my uncle, who just, very successfully, got through triple by-pass surgery; after spending the day at my Mommy’s with two of the youngest (and loudest) grandchildren.
So, it seems to all run together. And I cannot get my brain around prioritising it all.
I’m considering closing my blinds, turning off the phones, lighting candles and having a holiday at my house (by myself!) but, for that to work, I would have to throw my computer out the door, too. I don’t think that’s ever going to happen.
And it would all just be waiting for me anyway.
Hmm, I don’t feel much better after writing it all down but I think I have a better idea about what I have to do NOW!
Quick Note re: REAL Video
Ask for Support
Most days, I get a message or comment from some-one who is lacking support from their nearest and dearest. Sometimes, it’s because you hide your pain, or you haven’t asked for help. Sometimes it’s because they just don’t get it.
I made this video (with attached letter) because I am lucky enough to have a Mommy who loves me and tries to understand. (Sometimes I’m not so sure about the rest of the family.) But, because of this, these messages/comments upset me so much. Friends and family are supposed to be there for whenever you need them.
Friendship is for life. It involves an exercise of choice not compulsion. This is what makes it the purest of all relationships. However, you must choose your friends carefully. And cherish and nurture the friendship for a lifetime. It is not difficult to find friends. The tough part is to honor the friendship.
I’m hoping that presenting these people with this letter (or something similar) and the accompanying video might help.
Dear <insert name>,
As you know, I’ve been sick for a while now. You’ve seen me – you know what I go through; but somewhere along the way, we seem to have lost the compassion and empathy required to enrich our friendship and take it forward, through even the hardest times.
I am IN those hard times now, and I need your friendship and support.
I am including a link to a video (http://youtu.be/jNk-St6_bXg), which I would like you to watch. It won’t tell you about diagnoses, symptoms or treatments – instead, it tells you what I need from you, right now.
Please watch it and please try to understand.
With love,
ME
Related articles
- Friendship!!! What does it mean??? (countas2.wordpress.com)
- Bestfriend Is More Than Just a Label (honestlyaliar.wordpress.com)
- Chronic Do’s and Don’t's (fibromodem.wordpress.com)
Most Doctors Don’t Get It. I Do!
Reblogged from Dr Rodger Murphree
Fibromyalgia is Real
Because you have an illness that’s hard to “prove,” loved ones may secretly convict you of hypochondria or laziness. You may be told, “it’s all in your head.” You may be urged to exercise or lose weight or get more rest. Physicians can be worse. If they believe the condition exists at all — and some don’t — their first impulse is to mask the symptoms with prescription drugs. Patients often end up on a medical merry-go-round, seeing doctor after doctor after doctor, trying drug after drug month after month, year after year, with little to no relief. Patients end up more confused and disoriented than ever, often concluding, “Maybe I am crazy, after all.”
I understand!
For most of the world, it’s a common little phrase. But for people who have fibromyalgia or chronic fatigue syndrome (or both), it’s amazingly powerful, not to mention rare. The traditional drugs of choice for fibromyalgia, antidepressants (Cymbalta, and Savella), anticonvulsant medications (Lyrica), muscle relaxants, tranquilizers, and pain medications may provide short-term relief but their results are often fleeting and their side effects usually create more symptoms. It’s not unusual for my fibro patients to be taking twelve or more prescription drugs, many of which contribute to “fibro fog,” anxiety, depression, weight gain, and overall fatigue. I’m not against using drugs. But more and more drugs aren’t the answer for fibromyalgia.
Traditional medicine alone offers little long-term relief for fibromyalgia sufferers.
But don’t lose hope.
Dr Rodger Murphree is the founder and past clinic director for a large integrated medical practice located in Birmingham, Alabama. The practice was staffed with board-certified medical doctors, chiropractors, acupuncturists, and nutritionists who combined traditional and alternative medicine. The clinic provided cutting-edge treatments for acute and chronic illnesses. He has specialized in difficult-to-treat patients for the last 10 years. He is a graduate of the University of Alabama Birmingham (UAB) and is a board certified chiropractic physician.
Dr. Murphree has written 5 books for patients and doctors including Treating and Beating Fibromyalgia and Chronic Fatigue Syndrome, Heart Disease: What Your Doctor Won’t Tell You, and Treating and Beating Anxiety and Depression With Orthomolecular Medicine, and Treating and Beating Fibromyalgia and Chronic Fatigue Syndrome: A Patient’s Manual (which is available as a downloadable FREE e-book online (For Kindle, iPad, and other e-Readers). I don’t know if there are any catches as I don’t have an e-Reader, but you might want to have a look – www.fibroexpert.com on the left hand side of the page)
In 2002, Dr Murphree separated from his medical clinic so that he could open his own practice in Birmingham, Alabama. He maintains a busy practice focusing on fibromyalgia, chronic fatigue syndrome, cardiovascular disease, mood disorders, and other difficult-to-treat illnesses. He consults with other physicians, lectures throughout the United States giving educational seminars to patients and healthcare professionals, is a regular columnist for numerous publications, and routinely appears on national radio broadcasts.
Dr Murphree presented a seminar to doctors in Pittsburgh, which was recorded in 9 parts. Although the seminar was delivered to medical professionals, anyone with, or just curious about, FM can follow it:
Part 1
Parts 2-9
Dr. Murphree is a frequent guest on local and national radio and television programs including NBC, Fox, and ABC. He writes for several professional and public health related publications. His articles have appeared in The Washington Post as well as peer-reviewed professional journals, including, Townsend Letter for Doctors and Patients, Chiropractic Economics, Alternative Fibromyalgia News Magazine, The American Chiropractor, and Nutri-News.
Dr. Murphree conducts doctor’s continuing education seminars throughout North America helping doctors become proficient in nutritional medicine. Dr. Murphree’s books are available at most books stores and Amazon.com.
For anyone in the area, Dr Murphree’s new clinic is located at 2700 Rogers Drive, suite 100 Birmingham AL. 35209 (205) 879-2383. I expect a report back for the rest of us (please!)
Related articles
TOGETHER
On February 27 of this year, I started my Facebook page. I quickly became addicted and started my Blog (March 16), joined Twitter and Pinterest, and started a Fibromyalgia Awareness shop.
I am lucky enough to have 2000 LIKES (FB), 124 Blog followers and 71 Twitter followers.
I thank you all very much for making my efforts feel worthwhile. I am humbled by (and so proud of) your support.
In celebration, I made a new video – this is for ALL of US.
