Questions about posting

You know, for the longest time I’ve refused to write in this blog. I didn’t feel like I should say anything as I was busy wrestling with unpredictable symptoms and fatigue.

Still managed to fly out to New York to hang out with my husband…but spent most of my time in bed.  Bummer.

One of the other problems I have with using WordPress is that I generally have to write the post in Word (don’t trust my spelling or grammar!), move it over to Notepad to strip it of any coding and then post it in WordPress.

And if I want to post any links or pictures I have to wait until I’ve already got it into WordPress before I can do that (just remembered that) so of course there is always last minute editing!

Not exactly as organic as writing an email and hitting “send”, is it. I’ve still managed to send emails, pissing off kids, relatives and real estate agents with abandon, but no posts even though I have LOTS to say.

I’m curious. How do you write your posts? I’ve been looking but can’t find a whole lot of info on it…so I figured I’d just ask. What flow works best for you?

WHERE DO YOU WANT TO BE WHEN YOU HAVE PAIN?

DAY 33: I am glad I didn’t play it safe and stay home. It is also important to develop good memories during this time of illness.

So here’s the question, “Does it matter where you are when you are experiencing pain?” I have been thinking about that question since Friday while Greg and I were driving to Banff to meet our four adult kids and our grandson to watch our girls run in the Melissa 10KM run. I am still suffering from the effects of the treatment I had completed this week that pulls the mercury from my body so that I have even more symptoms to juggle. Fortunately, on Saturday I was still able to walk around the Banff area to cheer the girls while they ran. Our time here has been enjoyable but always requiring a concerted effort to “ignore” my symptoms. As I lay in bed last night with increasing pain, I began wondering if Greg and I were crazy to continue this holiday. But then I began thinking, “Would experiencing these symptoms be any easier if I was at home?” Yes, in many ways it would be! It is easier to go lie down at home and it is easier since I don’t feel the pressure to “push” as hard because I don’t want to jeopardize other people’s enjoyment. However, the flip side of those negatives is that I have the pleasure of being out of the house and the pleasure of spending time with my children and husband. Even though it has been a struggle, I now have memories that I would not have if I had stayed home. How sad to think I might have missed the following if I had chosen to play it safe and had stayed home rather than coming here for the weekend:
• Listening to a radio station that plays only 60’s music and seeing who could name the singer first – while Greg and I were driving to Banff
• Watching the girls participate in their run and to cheer them on
• Walking with my grandson who suddenly stopped to hug a tree
• Chatting with my son while he pushed the stroller; I especially enjoyed his story about a 3 year old boy who has 6-pack abs and can do chin lifts since his body has developed so much muscle
• Watching my daughter salivate over her pizza – dairy free that she hasn’t been able to eat for months since she has been on an elimination diet for health reasons
• Waking up in the morning and having breakfast with everyone
• Watching David show us how to do the Tree Pose since we girls were saying how hard it was to keep the leg from sliding down the leg
• Watching Greg try doing the Tree Pose, perhaps not quite as successfully!
• Listening to my son’s enthusiasm about the 100 Day Challenge that a motivational speaker has encouraged people to take by working hard to achieve a particular goal in a short period of time
• Appreciating my kids’ concern and kindness as they cope with a sick mom (or mother-in-law).
Today, Sunday, the kids return home and Greg and I begin our holiday. And even though I have considerable pain this morning, I look forward to sitting in the car with my seat slightly reclined and enjoying the drive. I think we will also listen to the radio station that plays only 70’s music to see if I can better compete with the driver when it comes to naming the artist of those songs!

A Cup of Joe In The Morning Talks To Egoscue

Wednesday Sept 25th at 9:30am, Seaview AM 960 show Cup of Joe in the Morning had Egoscue Palm Beach Garden’s Clinic Director Shawn Taker on talking about Egoscue. Thanks Angela for taking a moment and calling in to talk with Joe and Shawn.

Check out the conversation.

Don’t forget to listen to Shawn, Wednesday Sept 30th at 9:30am on Seaview AM 960 “A Cup of Joe in the Morning”!!

If you can’t catch us on the radio listen in to the show live on the web.

From the brain to the heart

whose that knocking on the door...

“We believe there is an invisible pathway from the brain to the heart,” a wonderful biofeedback therapist I worked with told me.

“We do not understand this theory yet, but we see changes, such as with lowering blood pressure and heart rate, along with reducing physical pain when people think of what they are most grateful for in life.”

She laughed and said she knew it sounded silly about there being a path from the brain to the heart, believed to be activated by thinking grateful thoughts, but I didn’t care if it was silly.   If I can learn how to lessen the physical pain from fibromyalgia and calm some — my spirit;  for there are many things that trouble and disturb my spirit, then I’m about trying it.

As I sat there connected to the computer, through a wire with a clamp on the end for my index finger, I was surprised how the graphs changed as my thoughts changed.   Sure enough, when I thought about what I am most grateful for, the prettiest colors in the graphs would show up stronger; purple, violet, orange and blue.

My therapist would get so excited.  “Look,” she would say.  “Look how much the graphs changed when you talk about your dogs!”  She was always surprised in our sessions.  She said I could go from one spectrum to the other more drastically than any of her patients.

I would talk about upsetting issues or the pain I live with and then change to thinking of and talking about my dogs.  The changes that occurred were visible on the computer screens, which I guess,  is the essence of how biofeedback helps a person.

The right side of the computer screen is where the colorful graphs were and on the left side was one column, which was a light purple color, and when I talked about my dogs this graph would usually reach the highest peak.

“That is the invisible path from the brain to the heart,” she would say.  She also said it barely showed up with some people and on average, a high peak was considered to be in the middle.

I could tell her about my 4legged Egyptian insect hunting dog and cause the entire screen to light up everywhere!

Once I began noticing on my own, outside of the sessions, the physical changes taking place in my body when I got upset, that awareness helps to  back up for a second.  Sometimes, one second is enough to change many minutes, hours or days.

If, as soon as I see the changes begin in my body when I get upset, I become aware of it, then it is possible to stop a cycle of thoughts that invariably and inevitably bring about what I don’t want.

It is my dogs I think of when I want to feel grateful.  I am grateful for my human family too, of course, but dogs give me a unique sense of purpose and peace that I don’t feel anywhere else.

Maybe it is because I get lonely and they give me so much comfort that way.  Maybe it is because they never get mad at me and are always forgiving when I am sick.  Maybe it is because they never put me down or criticize me.  And for sure, they appreciate anything I do for them.  They trust me, they treat me with respect and they are never sarcastic.

My sweet girl dog does get mad if I spend too much time at my desk and will at times, come over and start barking loudly right in my face.  The only time this causes problems is when I am on the phone with one particular friend of mine.  He gets irritated and says it hurts his ears.  She will sometimes do this when I get on the telephone.

I’m mostly glad that she barks in my face sometimes.  It’s usually just what I need.  Get up and go out.

Walking my dogs makes me feel good because it makes them happy.  The girl dog that barks in my face also smiles a lot and I get the greatest satisfaction out of knowing that I can do something good and not fail.

“You have to think grateful thoughts though,” the therapist told me.  “Positive thinking does not produce the same effects as does grateful thinking.”

Practicing feeling grateful helps me with depression and anxiety.  It helps me not to feel so hopeless about the sad things that I cannot control.  Feeling grateful helps me keep my chin up so to speak.

I’ve also been introduced to a series of books I like titled, The No. 1 Ladies Detective Agency, the main character, Mma Romatswe,  is a very grateful person.  She is always talking about how grateful she is for her country, Botswana, and the cattle, the rain, traditional values, and any little bit of growth that comes from the long anticipated rains.

Some say you must play the hand you were dealt in life.  Well, some of us got a pretty sad set of cards.  The game we win is one where we continue to keep on going in the face of what at times seems completely unbearable.

Some say if you are having a hard time then think of someone else having a harder time.  Well, sometimes this helps and sometimes it simply doesn’t.  I always question the source of advice.  I find that people who have not had to live with chronic severe pain cannot give advice on the subject.  Not the kind of advice I need, which is the kind that could actually do me some good.

I recently read an awesome book that enlightened me about the people of  present day Afghanistan.   Reading the book definitely gave me a fresher perspective on my own life here in the US.  The book, A Thousand Splendid Suns, just as ‘Mma Romatswe’ does in the stories from, The No.1 Ladies Detective Agency, helps me to be grateful for the basic necessities in life, such as  shelter and food.  I’m also aware that I can walk outside,  go into town and not think about getting tortured and/or killed.

Reading these books has helped me to think of the simple things in life we can be grateful for.  This is important for everyone I suppose, but I know it is important for people who face hard challenges every day they live.

I still have the same problems, even though I can say I am in much better shape and circumstances than so many people are.  I just have to keep on doing the best I can with what I have and am capable of doing.

I remain grateful for all that I have.

Mostar, Bosnia - Off the Beaten Path

I have returned from a walking tour of a small city called Mostar, in Bosnia Herzegovina, and I am still processing everything I have seen. It is a city in the process of rebuilding from the war in 1995. Restored, occupied businesses and homes sit next to blackened, looming ruins. Pockmarks and blast craters still mark even some of the restored buildings. Lush trees grow out of crumbling ruins, boarded up and graffitied with warning signs to stay out. Next door are bustling cafes and groceries. Young people stroll the streets. It is a fascinating juxtaposition, and a lesson in resilience.

My host’s mother drove me from the bus station to the hostel, and along the way she pointed out landmarks and explained what happened during the war, which she lived through. When Bosnia Herzegovina declared independence from Serbia during the breakup of Yugoslavia, the Serbian army attacked the town from the surrounding hills and mountains. At first, the Muslim Bosniaks and Christian Orthodox Croats fought side-by-side against the Serbs, but soon they also turned on each other. Heavy urban fighting commenced in the streets of Mostar, and we drove along what was the front line between the two sides, a modern street called the Bulevar. At one point, all three sides were fighting each other simultaneously.

The rebuilding continues. The first major rebuilding project was the famous Mostar Bridge, which was a city landmark that spanned the river dividing the Muslim Bosniak and Christian Croat sides of town for generations. It was bombed to pieces during the fighting, and the rebuilding was a symbolic healing process for the city. They rebuilt it with help from UNESCO and used the traditional building techniques. I walked across the Mostar Bridge today along with a herd of tourists, and found myself actually getting emotional. We take so much for granted in the States, and the news of war on TV seems so far away. This has been important for me to experience.

The city itself is a mix of Croats and Bosniaks. Both are Bosnians, but Croats are Orthodox Christian, and Bosniaks are Muslim. Mostar was part of the Ottoman Empire for centuries, where Christians and Muslims lived together side-by-side. It’s a European town, but not one we would normally picture. Cafes serve strong Turkish coffee (fantastic!), there are multiple mosques, minarets dot the cityscape, and calls to prayer echo out over the loudspeakers. There is even a colorful bazaar to haggle in.

Shed all your stereotypes about Muslims here – the women of Mostar walk around freely, dressed like any other European and talking on their cell phones. I did observe a few women wearing colorful head scarves, but Nina explained they choose to wear scarves as a visual show of their faith, much like many Christian Americans will wear a cross on a necklace, and Orthodox Jews will wear the skullcap.

I suppose I haven’t mentioned my health much lately. Rest assured I am holding up! The first few days I was constantly tired, but I allowed myself periods of rest, and even took a long nap yesterday afternoon. The fatigue has not been debilitating, and I hope to continue to pace myself so well. The physical aches and pains are another matter. My feet are sore, and I give myself foot massages every night. My back and shoulders are stiff, and I do stretches as much as possible to keep it from getting too bad. I will need a long massage when this trip is over!

Tomorrow I head back into Croatia. For now, I lunge back into the swirling sea of humanity that is Mostar.

Where I jump in and defend pills...

When discussions arise of disability, especially, it seems, of invisible disabilities, someone will almost always jump in and start harping about Big Pharma and how they have certainly invented our illness or disorder just to sell us or get us hooked on some new fancy drug.  Or, they will insist that we are just addicts who refuse to find ways to manage our pain.

And for some of us it is a type of shaming that is hard to get out of our heads.  For me, personally, I have let not just that, but some people actually convince me that pills were so bad that sometimes I convince myself that I can manage my life without them.  It usually takes a significant event (which I will leave out of this little anecdote b/c someone that I know reads this blog thinks these things are his business, but I assure you, they are not) to remind me and make me realize that I not only need them, but that it is in my, and my family’s best interest for me to use them.

I saw a doctor recently who took the time to have a real conversation with me about my health, my Fibro and my care.  It was incredible and refreshing.  She gently insisted and reminded me that I need to take some medications, and together we decided that, yes, some of them don’t hinder me, but actually give me parts of my life back.  That while addiction and dependency are different things, real concerns, and things to consider, they are things that we need to weigh against the benefits of taking medications.  She took the time to discuss side effects, interactions, whether I would need to take multi-vitamins, that I would need to watch my calcium intake (to avoid getting stones), and discussed lifestyle changes that I have either already made or would need to make to improve my quality of life, and that of my family’s.  This is the kind of thing that needs to happen between pain patients, chronic illness patients, and pretty much any patient who needs to take medications and their doctors.

So, now there are pills.  Seven of them.  Only two daily use, and the rest to be used “as needed”, which is something I rather like.  The Lyrica and the Topamax are gimmies, because I actually get some benefit out of them.  They improve my quality of life in a general manner.  Those are the the red and white one and the tiny yellowish one next to it (the jelly beans in the picture were my idea of a funny…HA!  C WUT I DID THERE?).  Lyrica helps me not want to throw myself out the window (which would be a feat w/ the window protectors on our sliding door-sized windows).  In other words, it means mobility and movement, once I have adjusted to the side effects.  Yes, it takes a while to adjust, but it is worth it.  The Topamax, and anti-convulsant, is given to me off-label for the constant Not Migraines that I have (24/7 for almost 5 years now).  It dulls the daily pain, and sometimes gives me mostly headache free days, which liberates me to do silly things, like stand up.  It also has side effects, such as a metallic taste in my mouth.  But I know this, so I expect it, and the benefits outweigh the gains, and eventually they fade.  For now, I switch to plastic cutlery and all is well with the world.

Sometimes, though, the headaches still break through.  That is where the pill above the Topamax comes in.  If you have had major surgery you might recognize it.  It’s Promethazine, or Phenergan, usually prescribed for nausea caused by anesthetic, but has an off-label use of relieving headache pain, and being a mild sedative.  This I can cut in half and only use during those times I have headaches not held off by the Topamax, and greatly reduces my need for a narcotic pain reliever.  Because it works as a pain reliever it also helps me sleep when the pain is bad.  Always a good thing.

Which brings me about to the big pill…my buddy, House’s and yours, Hydrocodone, or Vicodin.  I have given up any delusions that I can live my life without one, and my doctor gently agreed.  She understood my concerns of addiction and dependency, but reminded me that regular OTCs won’t help me with the breakthrough pain that my regular meds won’t cover.  Something I often forget is that Vicodin does something that a lot of scoffers don’t think about (something apparent if you watch House); it gives me some of my life back.  It lets me do frivolous things like get out of bed, cook meals, go places with my family, and even have sex with my husband, which is something that many doctors don’t consider in patient care.  People are too quick to assume that someone using Vicodin is automatically an addict, or that they aren’t “managing their pain”.  But those of us using Vicodin are doing exactly that are managing our pain, with the advice of our doctor, in a manner that is right for us and our families and loved ones.  That choice is between the patient and hir doctor, and family/loved one if zie chooses to share.  If.  A 30 day supply, thanks to the Topamax, Lyrica, and the as-needed Phenergan will last me about 90 days, give or take.  It’s a total win for me.  Plus, my doctor is so awesome that she has given me her email to allow me to renew the prescription without a lot of hassle.

The pink pill is Meclizine, or Antivert.  It is an as-needed pill for dizziness and nausea caused by Labrynthitis.  It is chewable, and I have to take it with a small amount of food.  The dizziness was a new symptom, because for some reason my tympanic membrane has been billowed out for quite sometime, causing me intermittent vertigo.  Again, since it is as-needed, I don’t mind it so much.

The last pill is for the chest pain I have been having, which is apparently the result of a suspected spastic esophagus, and is Zantac.  It is another as-needed pill.  The chest pain is rare, and new-ish, so there is no reason to have a regular med.  I can also try to take Tums first, the doctor tells me, so the need for this med might be less than that.

There is also a cream for the inexplicable rashes that recently have developed on my arms and legs, which sometimes respond to a topical Benedryl, but sometimes doesn’t.  It is a steroid, so it is another thing that I can take only if I need it, and only if Plan A doesn’t work.

I can not stress enough how wonderful it is to have a doctor who prescribes things that I can take only if I need them.  This keeps me from taking too many things at one time, and reduces the chance I will have an interaction complication.  I also can not stress enough that pill are not all bad all the time.  It is certainly true that there are probably people out there who abuse pills and take too many of them.  It is probably equally true that some doctors are too quick to prescribe too many meds too quickly to make a patient go away.  But at the bottom of the medication issue is the fact that how much or how many meds a person takes is between a patient and hir doctor.  It isn’t the job of a drive by concern troll to judge or offer suggestions on the care agreed upon by those parties.

Oh My Aching... Leg?

Certain low back conditions give rise to more than just low back pain. For example, leg pain can be more intense than low back pain, even though the cause of the leg pain is coming from the low back.  When this happens, many patients complain that they have “sciatica,” which refers to radiating pain that starts in the low back and extends down into the leg.  When the intensity of leg pain is worse than the low back, it can make patients wonder, “…where is my problem really coming from?”

To understand this better, a short “anatomy lesson” is appropriate. The spine can be divided into two halves, front and back. The structures in the front half include the larger, heavier bones called vertebral bodies and the shock absorbing cushions that lie between the vertebral bodies called the intervertebral disks.  The disk is like a jelly donut where the center is liquid-like and the outer portion is a tough, criss-cross pattern cartilage arranged like the rings on a tree stump. There are also ligaments that hold the vertebrae and disks tightly together. The back half of the spine includes the spinal cord, nerve roots, as well as the small joints of the back called facet joints.  Every movable joint has a joint capsule that helps lubricate the joint and limits the amount of movement, along with surrounding ligaments.  The larger, heavier vertebral bodies and shock absorbing disks carry the majority of the weight (approximately 80%) while the smaller facet joints carry much less weight (only 20%) but are more responsible for guiding the movements of our back.

When leg pain is present, it can be caused by either a pinched nerve, or, an inflamed facet joint.

When a nerve is pinched, the cause is usually from the intervertebral disk where the jelly-like center leaks out and presses on the nerve that goes down the leg, commonly referred to as a “herniated disk with sciatica.” This type of pain is quite specific, easy to describe and often extends below the knee to the ankle or foot.  It can include muscle weakness, numbness in certain areas of the leg, and bending forward increases low back and leg pain while bending backwards reduces the leg pain (and sometimes the LBP).

When a facet joint capsule tears (technically, called a “sprain”), the pain is “referred” down the leg in a generalized, non-specific manner, usually described as a “deep ache,” often hard to describe and usually does not go below the level of the knee. Here, it feels better to bend forward and worse to bend backwards, of which neither movement changes or affects the leg in a specific way.  Disk related leg pain carries a potential for surgery if all non-surgical approaches fail, while facet joint referred leg pain rarely requires invasive treatments or surgery.

YOU MAY BE A CANDIDATE FOR CHIROPRACTIC CARE FOR LEG PAIN  FOR A FREE NO-OBLIGATION CONSULTATION CALL OUR CUMMING GEORGIA OFFICE  770-888-4288

  www.backsmarthealth.com

2 months of time lost?

Has it really been over two months since I’ve written on this blog?  It can’t be . .  . can it?

I guess it is.  Let’s see if I can reconstruct that time.  If I can, it means this fibro fog challenged brain has pulled off a minor miracle.  What was the date of the last entry?  Hmmm . . . July 3.  It is over two months!  I’d better get started.

July 4 – 11 was the rest of our vacation in Alaska.  We spent 5 glorious days in Homer, AK – a place that actually felt like home to me.  On the shores of Kachemak Bay, across from mountains that drop into the ocean and include volcanoes, Homer sits up on bluffs primarily.  It does include a spit of land that juts about 4.5 miles out into the bay, only 19 feet above sea level.  It is aptly called Homer Spit.  The spit is lined with rocky beaches that include campgrounds – you camp right on the ocean.  It is also lined with small shops and restaurants.  Since the climate in Homer is not very much different from MA, I knew I could live there.  The only fly in the ointment might be the light issue – the Alaskan summers are fine: daylight all but about 5 hours; the winters, of course, are the reverse.  For someone with SAD (seasonal affective disorder), like me, it could spell trouble.  Still, I think I’d move in a heartbeat if someone told me to.

The rest of July was a blur of laundry, catching up on mail and construction.  We had our bathroom redone from the studs out.  Our only bathroom!  You see the problem with that, don’t you?  We did have a portable toilet outside the back door.  It wasn’t too bad except when you woke up in the middle of the night with an urgent urge and had to get dressed before you went outside.  I doubt the neighbors would have been looking for a half-naked woman streaking to the porta-potty, but the neighborhood skunk might have.  That wouldn’t have been pretty.  It took nearly three weeks to complete the estimated ten day job.  The joys of construction.  Now that it is done, we love it and that has made the “patience” we exhibited worthwhile.

July 31 saw us attending a Gordon Lightfoot concert at the Twin River facility in Lincoln, RI.  The concert was good, but we thought that he looked old and not really well.  It turns out that, two years before Lightfoot had suffered a burst abdominal aneurism and spent a week or so in a coma.  Put in that light, he looked really good for someone who nearly died!

We took a day trip to Maine.  We went to Perkins Cove and walked the Marginal Way.  I had never walked the whole way before, so I was proud of myself.  My husband started having palpitations this same weekend.  He was so unnerved by them that I had him call the doctor on a Saturday while I drove home from Maine.  He had them during the week for three weeks, with exacerbations each weekend.  Finally, the third weekend, the doctor told him to go to the emergency room to be checked out.  They actually kept him overnight that Saturday and had told him they would do a certain test the next day.  Great, except that the cardiologist had not shown up by 3 PM.  They told my husband they didn’t see anything to worry about, so he decided to check himself out and do any follow-up testing on an outpatient basis.  The “hospitalist” (new term for an attending physician who takes care of you for your doctor) must have been offended by the idea of this man deciding to take matters into his own hands and leave.  He told my husband that he could be fine OR he could have a blockage, drop dead and die.  That latter part was in direct contradiction to everything we had been previously told.  Needless to say, we left anyway.  Since even after testing, they told my husband they did not know the cause but the palpitations were completely benign.  No treatment was necessary. 

My husband would not have stayed in the hospital another night unless they’s told him he was dying.  Why not?  We had another concert to go to – the Moody Blues at the Mohegan Sun Resort and Casino.  What a great concert they gave!!  They sounded and looked as good as ever!!

I have a lot more to say and not much time left for it right now, so I’ll stop here with the concert and pick up tomorrow (I hope) with the rest of the catching up.  Right now I have to catch my breath and let my fingers rest!

Things Lost and Things Found in the Fibro Fog..... part 3

This is going to be a rough one to do….and keeping it honest will be painful in many ways and the boundaries of just what has been lost and what has been found can become blurred ….. even now I pause and think about deleting this and doing something else….. a sure sign I really need to do this one. So what have I lost that could be more painful than some of the things I’ve already posted? The core of my strength or was this what I found? That’s why the boundaries can be blurred……I’ve said before that my church had been there for me and their help was part of what kept me and my children with a roof over our head and food on the table….. with out their help I have no doubt that we would have been homeless after I became too ill to work and lost my job when my employer was told I was going to file a claim on my long term disability insurance that I had through them {whole another story}. So am I counting the help from my church as a found or loss? I am listing it as a loss….. a very deep loss. Everyone was willing to help us…… but the more involved they became the worse things got ….. they didn’t understand my illness…. they would look at me and see nothing wrong…… why didn’t I clean my house better? After all I’m there full time….. just what did I do with all my time? Why can’t I make it to church every Sunday? I was told to go back to my former employer and tell them I would go back to work and not have any sick time and would take any job they had open even if it was in housekeeping{his words not mine}….. just note I was a RN for 23 years and had topped out on my hourly rate…and the person at my Church telling me this worked in the administration of my former employer….. he just didn’t get it….just a quick note here so that I won’t forget this same person about six months later both his wife and daughter were diagnosed with FMS….. I pray for them….. but back on topic….. things got much worse when my COBRA insurance ran out and I needed help with my medications…..one cost over $500. for 30days and that one was a pain medication. I had finally gotten through to my doctor that I needed pain relief and over the counter wasn’t working and we had already tried everything else. NOW everyone at my church thought I was a drug addict and one also thought I was an alcoholic and would come up and smell my breath when she said she wanted a hug……the tremors in my hands can be really bad some days….I was told that it was only pain and I should just ignore it and keep on going…. I was weak…..one said he had cancer and went through chemo and THAT was pain….not what I have…. I was told that a person had cancer and worked up to the day before he died, never took any pain medication and never missed a days work…. I just needed to put my mind to it and try harder and just learn to live with some pain. Even after I spent a week in ICU tiring to fight off a viral respiratory infection …. not once but twice! Ended up with brain damage, diabetes, high blood pressure, COPD and on O2, sleep apnea, psoriasis, psoriatic arthritis and a whole long list of other stuff……then it was OK to take some medications to treat those things but not the pain medications…. for that you just must be tough. I lost a big support group that I thought would always be there and not be judgemental…. people who I thought knew me enough to know I wasn’t faking it just to get and use “drugs”  pain medication….. people who now look at me differently  when I do try and make it to church… the talk and whispers or the way they react when they see me and abruptly turn the other way and walk off at a brisk pace…{not an all out run but close!}. The one place I could always count on to feel peace, comfort and safety within the wall of that church building and I say that because no matter where I’ve lived and attended the church of my faith none felt the same as the one where I went the most while growing up and was baptized . {we attend a church based on where we live so if you move they will mail your church records to the church we will assigned } Now this is a lot about what I lost and if you are reading this you most likely are thinking is this a novel or a post and just how long is the “found” gonna be? Well, it will not be all that long because what I found was that my faith should not be about the people in my church because they are just that “people” no better and no worse than me…. yeah that’s right… no better than me. They have faults and are just as able to misunderstand things as the next person….. I had put them up on a pedestal and made them perfect and thought they had the power to read my heart and soul…. and I found I was wrong. I found that my faith and strength comes from a high power than them or me. I found that the feeling I got at church wasn’t because of the people inside the building but was the spirit of my higher power that resides with in those sanctified walls……. now if I could go and sit in a room alone at my church I’d be there in a skinny minute…… OK a very fat minute I know I’m slowwwww now. Also I can find my peace even at home as I study my church’s teaching. Yes, I miss the fellowship that I lost but I have found where my faith truly comes from and that is more important. Now that I purged this from my heart maybe someone else can benefit from this lost and found….. maybe that is why I have felt the need to tell this or maybe just needed to do this for me….. either way now I can move on in peace until our paths cross again…….. Lila

PLEASE NOTE 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 YOUO WILL COME TO MY WEB SITE BLOG AT WORDPRESS  http://www.lilabyrdakabirdladybyday.wordpress.com 

Today, Fibro might've won my body...

“I like living.

I have sometimes been wildly, despairingly, acutely miserable..

racked with sorrow, but through it all I still know

quite certainly that just to be alive is a grand thing.”

~Agatha Christie~

Today… I think my body decided that it’s time to go down for the count. Sitting up is tiring! So this is going to be short in all likelihood. I did manage to work on a few things for CWL from my bed this morning then a fever came and now I’m fighting the urge to lay down & quit. I feel yucky and want to take a bath but I know that even changing clothes is going be a chore. This is when I really get frustrated with being sick. I can do without being able to do things I WANT to do in life most days.. but the things I NEED to do are harder to handle when I can’t. It really really sucks to have to find a compromise with your own freakin body…

Yes.. I know it could be worse.. a lot worse. Which is why I don’t post many negatives. I hate feeling like I’m complaining. There are times tho that I get so frustrated with the limitations imposed upon me that I just need to say “I HATE YOU FIBRO & stop dragging me down!” to get rid of the negativity that can often poison my thoughts.

Today, Fibro might’ve won my body… but I won’t let it have my thoughts too…

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

AMALGAM FILLINGS: HARMFUL OR HARMLESS?

DAY 16:  Continue removing the amalgam fillings.

My doctor is very confident that as I lower my mercury levels, much of my health will return.  He believes that removing my amalgam fillings is a significant component in this process.  Obviously this topic is rather controversial especially if you talk to your own dentist!!  Therefore, I decided to check out what the Canadian Dental Association has to say about this matter.

First, I learned that they confirm  that “amalgam fillings release minute amounts of mercury vapour, especially with chewing, and that this mercury can be absorbed, reach body organs, and cross the placenta.”  However they qualify that no study verifies that this amalgam causes illness in the general population.  Notice the word, “general population” since that will be used quite often.  They also acknowledge that mercury is a ”poisonous metal and that very small amounts of mercury vapour are released from amalgam with chewing.”  The video I have included at the end of this posting will dispute their confidence that it is only very small insignificant amounts!  They further acknowledge that “the mercury absorbed from all sources accumulates in body organs and tissues, mostly in the kidneys, but also in the brain, lungs, liver and gastrointestinal tract.”

I love the word “estimates” when they attempt to answer what amount of mercury does a person take into the body:  “Health Canada estimates that for the average Canadian adult 20 to 59 years old the amount of mercury absorbed by the body from all sources is about nine millionths of a gram per day.  Of this total, dental amalgam is estimated to contribute about 3 millionths of a gram per day. “  This sounds like a miniscule amount doesn’t it?  However, I have recently learned how very little estrogen our body requires to operate normally and I realize that minuscule amounts of “extra” can completely unbalance how a system is supposed to work.  Also, what number of amalgam fillings are they using and how big are the fillings that they are using to calculate this amount?  I have 10 large fillings and two small fillings which is probably quite high particularly for young people who don’t have the same dental work done as was done forty years ago.

I was getting a little irritable when I read their answer to the question, “Is the mercury which is absorbed into the body harmful?”  They write, “For the overwhelming majority of people no harmful effects are known to be caused by the average levels of mercury exposure from amalgam fillings. “  That is a confident statement worthy to be trusted as long as you believe that you belong to that general population.  I was also frustrated when they attempt to use science as evidence of the harmless effects.  They state that, “Scientific observation of patients over the course of 150 years of using ever-improving formulations of dental amalgam is the foundation of CDA’s confidence in this material for general use.”  Tell me how patients would have been clearly observed when developing a pure science experiment to observe the effects of amalgams would be incredibly difficult.   Could you find enough people who all have the same number of fillings, the same age of fillings, the same health issues?  I don’t know how they would eliminate all of the spurious factors.  I would have respected this Association more if they had admitted to the enormity of the task to effectively observe its effects on that general population, rather than trying to convince its readers that science also proves their conviction that amalgam fillings are perfectly acceptable.

Now tell me, if they are so completely confident of their past 150 years of untarnished record using amalgam, how could they also concede that “every time a foreign substance is used in the human body for therapeutic purposes, there is an element of risk.”

I actually think the real problem is that it is incredibly difficult to prove or disprove the effects of mercury.  I also think that most likely that general population may respond beautifully to ingesting mercury.  Or do they?  The problem is that we expect each body to respond in the same way so that we can make broad statements about that general population.  Unfortunately, most of our bodies don’t claim to be part of that general population.  Some react to eating too much gluten, others to dairy, and others to caffeine.  Some react to inhaling perfume, well you get my point.

For all of their confidence in amalgams, it is interesting that there is an openness to substituting amalgam fillings as they write, “the dental profession is aware of research to find more durable alternatives to amalgam and these materials may be available within the next decade.”   I am left with the inference that they would then stop using amalgams even though they are so completely confident in its use and they would begin using something else!

The Canadian Dental Association admits that amalgam fillings are not safe for every patient.  “It has been estimated that the prevalence of mercury sensitivity in the general population is approximately 3%.”  What if they used different variables and eventually learn that that percentage is actually much higher than they were aware of?  They state that “alternatives may be considered for individuals who are immunologically compromised or who suffer from a neurological condition.”  What if there are many more people who are immunologically compromised and sadly the patient and the dentist are unaware of this.

Finally, it is also interesting that they quote Health Canada who states that while “the research evidence did not support excluding children, pregnant or lactating women…from receiving amalgam fillings…common sense dictated that pregnant women should avoid any elective medical or dental intervention until after delivery.”  Should common sense also tell us that even the general population should avoid receiving amalgam fillings?

For more details see the following link for the Canadian Dental Association:

http://www.cda-adc.ca/en/oral_health/faqs_resources/faqs/dental_amalgam_faqs.asphttp

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

2am unmentioned tears

what if I really wrote the truth about how I feel and what I think…

would that be OK?? would it be legal?? so long as they were just feelings and not plans, would it be safe to put those words out there? would I be loved more? would I be loved less?? could I be loved less???

something has been wrong with me all day and all night. tears keep coming out of nowhere the last few days. life, as I know it…is too hard for me the way things are. honestly, it is too fucking hard.

wish, wish, wishing again and wishing harder that I could explain what my illness(es) have done to me and how I am so much more limited now. nobody gets it. NOBODY GETS IT. worst of all, only really two people care.

even the therapists office that seemed so concerned in “saving my life” won’t even call or e-mail me to see if I am OK. all they had to say to me was, you owe us money. they fucking turned a most tragic day into a memory that will haunt me until the day I do finally die. and they somehow now expect I’m OK. NO!!!! now I am worse!!! well, they have their $25 dollars. and they have a file on a girl who is extremely FUCKED UP!!! and they have my phone number(s). they have my e-mail. and nothing. not one single card or note or voice mail saying I hope you are OK Kimberly, and we’d like to be of assistance to you again.

I kinda feel like nobody wants to deal with me again, after dealing with me for a while. unlike some patients people, I am not an easy fix. my problems cannot go away. the only method of help for me, is medication to calm my constant anxiety and tools to help me cope with things that will never go away, that will never be repaired…that will only get worse.

I tried. I tried so fucking hard. I want to scream at certain people for hours over how hard I myself have tried. I will continue to try.

but I would sell my soul to the devil (if only I believed in him) if just one person in my life could truly understand how hard my life will forever be, and how alone I will forever be…and what that does…

to only me…

[Via http://kimberlysawczuk.com]

The Heat Is On

If you know me, then you know my passion for promoting suicide prevention…if you don’t know me…then you know this about me now!

My current endeavor involving these efforts to promote awareness and end stigma and prevent suicide involves the Kansas City Out of the Darkness Community Walk, a walk that benefits the American Foundation for Suicide Prevention and their efforts both locally and nationally. I am a big fan of AFSP and I am really excited about this walk that is coming up on October 17th. But, truth be told, I’m also feeling a wee bit of anxiety.

I am a part of the Walk Committee (a small group) of people putting this event together and I have some responsibilities that I can call all my own. These responsibilities include PR work and contacting local radio and television stations. I am not having the best of luck… it is difficult to get responses from the busy and hard workers in these media sources and it is difficult for me to find large chunks of time to get things accomplished. That being said…I need to make some more progress, and I’m feeling the heat, the pressure, of an event date that is quickly approaching!

So, if this is causing me some stress…why do it?

Last year I walked in this first ever event in my city. I did not know that it was a new event. I was inspired to take action in regards to this cause and I did an internet search that pulled up the walk. I was just in time to register with only a matter of days before the walk began…and at the time, walking the short 3 miles seemed like a really big effort for me, as I was dealing with severe fibromyalgia symptoms. I walked, I even raised a little bit of money, and I felt absolutely wonderful about what I was doing. I had a new source of hope for myself and a new hope that I could share with others.

After suffering from depression since a teenager and having attempted to take my own life in the past, I feel a great compassion for others struggling with depression and having suicidal thoughts. I feel like I have a way to help others who suffer by being a part of events like these and by helping raise awareness about the need for suicide prevention. Also, I have been given the opportunity to shed light on how a person who is suicidal is actually feeling and how their mind might be operating when an attempt it made, sharing much needed information to loved ones and family members who have lost someone to suicide. It is horrible to see the pain of those who have lost loved ones but it is a gift that I am able to share my experience and I hope that it may somehow ease that pain for them.

I, too, have lost loved ones to suicide. My grandfather died by suicide in 1998 and I have lost a friend to suicide as well. Recently, some friends of mine lost their brother to suicide. It is all around us, yet people often don’t speak of it. It is a tough topic, it is difficult to understand, and the reality of it is very sad…but being involved in promoting its prevention can be a beautiful experience and one in which peace and comfort is found.

I share this all with you as a glimpse into what is going on in my life right now, but also, on the eve of World Suicide Prevention Day, I urge you to pay attention and take action regarding this cause. If you can help me spread the word, I would be overjoyed by the assistance. If you can donate to my fundraising page (as I am a walker in the event as well) I would be equally appreciative. If you feel led to look for a walk near you and register in one of the hundreds of walks going on around the country, that would be fabulous. And if all you can do, is tell yourself in a quiet place in your heart, that you are not alone, that others understand your loss or struggle…that is okay, too, and a huge blessing to me.

One of my new life tapes that I tell myself and sometimes others is “put your passion into action“. This is my passion and the action that I am taking about it. I want to reach others before they fall into the dark pit of suicidal thoughts and suicide attempts…I want to help those grieving over losses by honoring the memory of their loved ones…I want to break down the silence and stigma surrounding this issue and it’s many ramifications.

Will you help me? The heat is on.

[Via http://unavitabella.com]

Qnexa, Glutamate, and Weight Loss

CNBC reported today that a company called Vivus has a drug called Qnexa that reduced the weight of participants in a trial by 14% after one year of taking the drug.

I know a lot or research is being done on how glutamate regulates weight so I was curious on what was in this drug. I found it is a combination of Topomax (topiramate, an anti-convulsant) and phentermine (an amphetamine which was part of the horrible weight loss drug Fen Phen).

The amphetamine is only there to reduce hunger so it is not something I am interested in, but there it was, topiramate, which is known to  reduce extracellular glutamate in the body.  The topiramate helps restore function to the pancreas by stopping the destruction of beta cells in the pancreas caused by glutamate excitosis. The thing to note is that the trial was performed on obese people with type 2 diabetes.  Qnexa helps restore pancreatic function by stopping the destruction of the pancreas by glutamate, that in turn normalizes blood sugar and helps return the body to homeostasis. But the point I want to make is that YOU DO NOT NEED QNEXA TO RESTORE PANCREATIC FUNCTION. You only need to reduce your levels of dietary glutamate. Or, you could take resveratrol which has the same action but with less cost and no side effects.

So, here is your choice, you can spend money on pharm drugs which will undoubtedly give you side effects. Or, you can choose foods that have low levels of free and bound glutamate. Because the only things these pharm drugs do is block the effects of the food additives in the typical shitty American diet.

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

Magnesium - the very important millennium mineral.

65% of patients admitted to Intensive Care Units have a magnesium deficiency and up to 40% of the general population have also been found to be deficient in this very important mineral.

Magnesium is mentioned rarely (certainly not as much as calcium) and yet it is vital to so many functions in the body. Stress depletes the body of magnesium as well as the B vitamins that work with magnesium and therefore if you have been under a lot of stress it will be beneficial to supplement with both of these nutrients for a while. In this stressful era we need more magnesium, it is the mineral of relaxation, but we tend to get  less because of our heavier reliance on fast foods and alcohol.

Magnesium – what does it do?

• it aids detoxification
• relaxes the system to diminish – irritability, anxiety, unstable emotions, muscle spasms, insomnia, low back pain, constipation.
• it raises HDL (good) cholesterol and lowers LDL cholesterol
• it lowers blood pressure – if given I/V as soon as possible after a heart attack it improves survival.
• it is a useful treatment in Angina
• helps lower eye pressure in Glaucoma
• improves Insulin production and utilization in Type II diabetes
• lessens headaches and migraines and is useful to aid coffee withdrawal.
• works with calcium to maintain healthy bones
• regulates the absorption of other nutrients and the action of enzymes in our bodies
• is essential in the Krebs cycle (energy)
• helps to regulate body temperature
• it is essential for nerve and muscle function

Here are some of the symptoms that magnesium deficiency can cause:-

• muscle weakness
• abnormal heart rhythms or palpitations
• tiredness
• loss of appetite
• cramps
• fits
• high blood pressure ( magnesium is the natural Calcium channel Blocker)
• insomnia
• sensitivity to loud noises
• anxiety
• difficulty swallowing

Anyone who has any of these symptoms or who suffers from Fibromyalgia, Chronic fatigue, Irritable Bowel Syndrome, Heart disease, Kidney Stones or Attention Deficit Disorder could benefit from taking 400 – 1000mgs magnesium supplement but anyone with heart disease or kidney disease should discuss this with their doctor first. The most absorbable forms are citrate, glycinate or aspartate so avoid the cheaper forms that are not well absorbed. If you take too much magnesium it will cause diarrhoea.

Low magnesium and high sodium – a recipe for cancer.

Magnesium is essential in moderating the levels of potassium (high) and sodium (low) in all our cells. If you are low on magnesium and eat lots of salty foods then the cells can become poisoned, low on oxygen, low on potassium and produce less energy. The acidity within the cells then goes up which impairs the chemical reactions and reduces the oxygen even further. Cells reproducing in this toxic state are more likely to mutate.

The best sources of magnesium are:-

• cocoa powder and dark chocolate 70% cocoa solids or more
• seaweeds like Kelp, Nori, Dulse, Kombu etc.
• Nuts – Brazil nuts, Pine nuts, Cashew nuts, Hazelnuts, Walnuts and Almonds
• Seeds – sunflower seeds, sesame seeds.
• Soya – mince and beans
• Liquorice
• Wheat germ and wheat bran
• Millet
• Rye
• Brown rice
• Dark green leafy vegetables
• Figs and dates
• Beans
• Garlic

For a quick fix prior to going to bed try soaking in a hot bath with 2 Tablespoons of Epsom Salts (Magnesium Sulfate)added to the water and a few drops of a relaxing essential oil such as Lavender or Chamomile, the magnesium will be absorbed through the skin and you should sleep like a baby!

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

A Special Cause for Special People : The Arthritis & Wellness Fall Walk, Arnold Palmer, and Celebrities with Chronic Pain - Ashley Boynes, Community Development Director, WPA Chapter

Our first annual Fall Walk is an important event – it is at a very special location, during a very special time of year, for a very special cause, and, with a very special designated Honorary Chairman. The 2009 Arthritis & Wellness Fall Walk is at Idlewild Park during their festive Hallowboo celebration, and we are making the effort to not only focus on the walk itself, but also to promote the wellness aspect of the event. The Arthritis Foundation, Western Pennsylvania Chapter, has a very strong focus on overall health, physical activity, and wellness, for EVERYONE — not only those affected by arthritis. In addition to having Senator Kim Ward as an Honorary Public Leader, as well as two very special honorees, we’ve been lucky enough to have golf legend Mr. Arnold Palmer lend us his name as designated Honorary Chair.

Arthritis – the cause that is special to us – is also very special to him.

Arnold Palmer’s passion for golf began at the tender age of 4 years old. He focused on golf during his formative years, and by high school dominated the Western Pennsylvania region. In 1955, Arnold Palmer joined the pro tour. Since then, Mr. Palmer, now celebrating his 80th birthday, has been regarded as one of the most accomplished golfers of all-time. Not only is he an exquisite athlete and golf legend, but Arnold is also a strong supporter of many causes, ranging from cancer research and awareness to arthritis. Both of these causes hit close to the constant do-gooder’s heart. He himself has been touched by both illnesses. His first wife died of cancer, and he is actually a prostate cancer survivor and arthritis sufferer.  Arthritis hits even more close to home for Mr. Palmer, though, when it comes to his late mother. Doris Palmer passed away in 1979 from what has been described as a cruel case of crippling arthritis. Her battle was brave, and her name lives on at the University of Pittsburgh Medical Center “Doris Palmer Arthritis Center” where “healing and hope begin.” The Palmer family have been active in cancer and arthritis advocacy and awareness. Arnold Palmer’s legacy of being an upstanding citizen and outstanding athlete, along with his dedication to helping others, has made him the perfect Honorary Chairman to be affiliated with our 2009 Fall Arthritis & Wellness Walk. He fully encompasses what living a positive and healthful lifestyle of wellness should be!

However, that being said, Arnold Palmer is not the only celebrity who has battled arthritis. Singer, choreographer, and reality star Paula Abdul suffers from arthritis, carpal tunnel, and regional complex pain syndrome, which is similar to fibromyalgia. She encourages a positive outlook on life to lift one’s spirits and also donates her name and her time to causes that are related to empowering women, self-confidence for teens, physical disability and pain disorders. Actor Tobey Maguire – best known for his role as Spiderman – has severe and chronic back pain, as does screen legend Liz Taylor, who claims her scoliosis and chronic pain has “helped fuel her philantropic drive.” Athletes Joe Theissman and Shaquille O’Neal both have joint pain and confirmed arthritis. Emmy Award-winning talk show host, Montel Williams, suffers from arthritis and Multiple Sclerosis and has dedicated his life to helping create awareness on the subject of MS and other chronic pain and autoimmune disorders. Actress AJ Langer, best known for her role in the 90’s teen drama, My So Called Life, suffers from what she describes as debilitating fibromyalgia. She has taken it upon herself to speak out on the disease. Actress Jennie Garth (90210, What I Like About You) and husband, Peter Facinelli (Twilight, Nurse Jackie) have a daughter named Lola with Juvenile Rheumatoid Arthritis, specifically, Still’s Disease.

It is inspiring that so many famous people can shed some light on these debilitating and disabling conditions. It helps to have role models like Arnold Palmer, and the rest, to spread the word on arthritis, to promote wellness to encourage research, and to let everyday citizens of all ages know that they are not alone in fighting this battle.

So many people live with arthritis and other chronic conditions on a daily basis, hiding behind a smile, knowing that there is not much else that they can do but keep pushing on. “Success stories” from these celebrities, plus people such as Mr. Palmer, along with our honorees that you will be hearing much more about in upcoming weeks, can provide hope and inspiration to those of us who live with constant pain and chronic illness.

…Don’t Be IDLE, go WILD in the Highlands! ~ For further information on the 2009 Arthritis & Wellness Fall Walk, or to find out how to start a team or donate to the cause please visit: http://fallwalk.kintera.org

For more information on Mr. Arnold Palmer, please visit his official website, here: http://www.arnoldpalmer.com/

Thank you, and stay well!

Best,

~ Ashley Boynes

Community Development Director

WPA Chapter

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

Registration. And more Suboxone Withdrawal.

Look at me go! I’m now registered to start classes this Fall to become a chemical dependency counselor. I think it will take about a year of school, then a year of work to become fully licensed. I still plan to go on to finish my BA and hopefully grad school – but this is a quick(er) way to get a job skill that might actually net me a semi-decent paycheck and health insurance while I grind my way through the next ten years of college.

Thirty days have elapsed since my last dose of Suboxone. As I predicted, the past week, also known as the PMS week, has been the hardest. My hormone cycle seems intimately and intricately bound up with my fibromyalgia and as my estrogen drops my pain increases. And because I like to fuck myself even more royally, this is the time when I give up and sit around watching tv and reading instead of pushing on thru with the yoga and the walking and all those other things that I “know” would make me feel better. Theoretically.

Give into it I did this month. I fought so hard through the first two weeks of withdrawal that I was just spent by the third week and had fuck-all for the fourth. But hey, that’s why I quit a month early…to give myself time to get through this, right? And getting through I am. I hope.

Lack of sleep didn’t help the situation much either. Doc gave me ambien, which does put me to sleep but I think it messes with my daytime motivation. Seemed like I was actually getting more done before I started with the sleep-aid. Can’t win for now, but it will pass. Still, even with all this PMS bitching, this has been WAY easier than I was thinking it would be. I thought I would be in bed crying and screaming my hate of life but it’s been nothing that dramatic.

I predict that if I force myself to take a walk eery morning for the next 30 days, I will be feeling 100% better at the end of September. So that is what I’m going to do. Take a fucking walk.

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