Tag Archive | Conditions and Diseases

Thriving Anyway

Responding to my friend, T’s blog today I realized something pretty powerful. As I read all the challenges she s facing going back to school; I also realized that this woman who I met initially and bonded with completely because of a disease is my constant mirror. In her reflections I see myself.

Thriving T* and I met, became friends and made a bond with each other that we would not rest beside negativity in our environments, and NOT looking at our lives as we are the victims of anything. We so are not. Instead she & I have a made a promise that we have kept. The promise that despite what is going on with our bodies we are still in as much charge over our own lives as before. We have the power to thrive.

Thriving means moving forward with life. Not letting the road bumps in the journey throw you out of the race.  My friend Thriving T* sets a perfect example. Checking my own self inventory against the back drop of this promise has kept me focused. I am not defined by one thing in my life. why would  I allow an illness railroad me? Thankfully I am ahead of this illness and know its antics. I am in more control now than I ever have been.

You will find at T* blog http://itsarealpain.wordpress.com/2012/09/22/day-104the-spark/#comment-614  full of postings of graciousness and kindness. Thriving T* is a power house to be reckoned with and as someone who has Fibromyalgia as well.  I am most impressed with what this woman does in spite it.  She is a friend of  my own heart.

Thriving T* has kept me on my less than narrow path when I started to falter. She is a constant gentle reminder that I can do this. I can make what I need changing – different. What I want & need it to be.  I have much assurance that when I leap I am going to be caught, There is no fear, that has been replaced by Faith.

So when this Baroness uses the term ” I am thriving”  in spite of Fibromyalgia (+  two autoimmune diseases) it is to say that I am not just “getting by” I am thriving. I am thriving right on through this life of mine. As is my good friend and sister Thriving T*  We are warriors over our disease, we are the masters of how we process and assimilate what life throws at us.

In our own world [of health] sometimes there is little control over what is happening to the body. That unwinding sense of loss of control over your life can be something that takes a person out. Sadly  it happens. In order to thrive learning there is much you can do about some things concerning your health, there are thousands of choices to be made to that end. Choosing options that allow myself to thrive is my choice, and it has continued to serve me well.

Thriving beautifully on the wings of living well

 

 

©tjhelser2912

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TMJ Survey Yields Valuable Insights Into Condition, Sufferers

The TMJ Association, Ltd. has released the results of an extensive survey they conduceted with 1,511 people living with temporomandibular joint disorders (TMJD).  The goal for this survey was, “…to provide patients, providers, and scientists with a fuller understanding of these condition…

Read the rest of this post >>

 

By Karen Lee Richards, Health GuideSaturday, March 31, 2012

The TMJ Association, Ltd. has released the results of an extensive survey they conduceted with 1,511 people living with temporomandibular joint disorders (TMJD). The goal for this survey was, “…to provide patients, providers, and scientists with a fuller understanding of these conditions – who experiences them, and the treatments being recommended to TMJ patients and whether these treatments help them.”

TMJD, as defined by a 1996 National Institutes of Health Technology Assessment Conference on Managing Temporomandibular Disorders, is “a collection of medical and dental conditions affecting the joint and muscles of mastication, as well as contiguous tissue components.” It is thought that as many as 10 to 36 million adult Americans are affected by TMJD.

Survey Results

 

Demographics: Survey participants were 90 percent women; 96 percent were non-Hispanic white; average age was 40.8; 70 percent were employed; 79 percent had some college or a college degree; 57 percent were married, 29 percent had never been married and 12 percent were divorced.

Onset and Diagnosis: Slightly more than half of the survey respondents said their TMJD-related pain began between the ages of 18 to 39. On average, they reported that it took approximately four years following the onset of pain to receive a diagnosis. When they were finally diagnosed, 73.6 percent of the diagnoses were made by a dentist and 21.8 percent by a medical doctor.

Perceived Cause: Given a list of possible causes of TMJD, survey participants were asked to indicate which they personally believed caused or contributed to their condition. The results were:

Trauma – 65 percent

Stress – 49 percent

Teeth clenching – 47 percent

Arthritis – 17 percent

Orthodontics – 11 percent

Dental problems – 9 percent

Heredity – 9 percent

Pain: Using the 0 – 10 pain scale with 0 equates to no pain and 10 is the worst pain ever, 80 percent of respondents reported an initial pain score of four or more. Within the last four weeks, 53 percent said they had a pain score of 4 or more and 56 percent reported severe pain “off and on all day.” Fifty-three percent indicated that the pain had mildly to moderately interfered with their work, while 23 percent said it had extensively interfered with their work-related activities.

Therapies: Participants were asked to rate the effectiveness of a variety of nonsurgical and nonpharmacological treatments that were recommended by their health care providers. It turned out that the most frequently recommended treatment was also the most effective. Thermal therapy (the application of hot or cold compresses) was used by 65 percent of the respondents and 74 percent of those who tried it said it helped reduce their symptoms. The second most recommended therapy was jaw exercises (60 percent), however, only 49 percent of those using it felt it was effective. Fairing a little better in effectiveness was the flat-plane/stabilizing splint (orthotic) with 52 percent trying it and 56 percent feeling it had helped reduce symptoms.

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Medications: Respondents reported that a number of different medications had been prescribed to treat their TMJD. Following are the medication categories and the percentage of participants for whom they had been prescribed:

Anti-inflammatories – 73.3 percent

Nonprescription pain relievers – 56 percent

Antidepressants – 50.5 percent

Opioids – 48.3 percent

Anti-anxiety medications – 40.8 percent

Muscle relaxants – 40.3 percent

Surgical Procedures: A substantial number of participants (394) reported having undergone one or more major surgeries to address their TMJD symptoms. Of those who had undergone surgical procedures:

54 percent had one to three surgeries

30 percent had four to nine surgeries

15 percent had 10 or more surgeries

 

The surgical procedures were also rated as to effectiveness.

Less invasive surgeries (arthrocentesis and arthroscopy):

54 percent – Somewhat or significantly better

17 percent – No change

26 percent – Somewhat or significantly worse

 

More invasive surgeries (condylectomy, condylotomy, coronoidectomy, disc plication, eminectomy, and maxillary or mandibular osteotomy):

6 percent – Significant improvement

32 percent – Some improvement

28 percent – No change

46 percent – Somewhat or significantly worse

 

Comorbid Conditions: People with TMJD tend to have other comorbid (overlapping) conditions as well. According to this survey, the nine most prevalent comorbid conditions were:

Migraines

Tension headaches

Depression

Degeneragive arthritis

Chronic fatigue

Dizziness

Tinnitus

Gastrointestinal issues

Allergies

 

In addition to identifying other conditions they had experienced, respondents were asked to indicate whether these conditions occurred before or after the onset of TMJD. All of the comorbid conditions were found to be much more prevalent after the onset of TMJD.

If you would like to see additional survey results, you can download a copy of the full journal article with accompanying tables here: Temporomandibular Disorders and Associated Clinical Comorbidities

 

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Source:

Hoffmann RG, et al. Temporomandibular Disorders and Associated Clinical Comorbidities. Clinical Journal of Pain. 27(3): 268-274, March/April 2011.

 

 

 

 

 

Identity, Identify & Beyond

{ Originally posted on Barefoot Baroness February 10, 2011 Re=posting eher at fullCircledMe  so all  health posts on one blog. }

JUST WHO AM I ANYWAY?

I was reading another blog, a very different kind of blog than I have been accustomed to coming across.  one of his posts got my mind a buzzing “My glamorous, More Interesting Clinical Identity”

This post  stayed with me even once I had moved onto other things. I could not shake the thoughts that were flooding my own mind and connecting with that he spoke of.  For days, and now into a few weeks I have not been able to shake the thoughts this post provoked. But in different way.

Before I continue any further let me give you my point of reference‘s link:

http://eitheory.com/2012/01/11/my-glamorous-more-interesting-clinical-identity/

This incredible anecdotal clinical session brings to the fore front of my own mind that although my circumstances are different ( are not they all?) I am different from his client that he speaks of here. But I get it. I see it. Give some people a way to define themselves when they have discovered little else about themselves and a new creature is born.
Albeit Dr Micheal’s post refers to Mental Illness  in this case I still get it. I am relating his post to physical illnesses. I think the two can mirror one another so for me I am allowing this article speak to me in this way.  Body & mind. So I could not shake what I’d read. It stayed with me even long after closing the lid to my laptop. As I said weeks later its still with me.

Having been (and currently still am) a member of the Doctor’s Appointment Club for the vast part of 28 years and participating in support groups of many forms naturally I come across others who like me live with a chronic illness. I hear them talk amongst themselves, including this lady with hair to her hips,  and skirts to her bare feet. While the book is in front of me open to page ?? my mind wanders as I listen to their vivid descriptions of themselves in this doctor‘s waiting lobby. Descriptions of their pain, their fatigue,  their husband and families, theirs UN-acceptance of the intrusion in their lives, their whatsoever…. I wondered if this the only way they see themselves.
Maybe I should not hide it  from others when I am in severe pain, maybe when my symptoms are up to no good I should be sharing this with all to hear.  Allowing myself to be part of my outside social circle when I hurt so much concentrating and focusing on a conversation is not possible. Hmmmm??… I think not. I think that I am far more “Emotionally Intelligent“. And I know that I am much more than an illness that has invaded my body. Uninvited.
I am not my illness. Yes I am not always well, I have a chronic illnesses, I have chronic pain and fatigue. I get it. My family gets it. My close friends get it. These people are more important to me than me being ill. I hate that my symptoms affect them. But they get it. And they get I am doing all that I can to manage my life despite having this illness that happens to disrupt my life on a regular basis. It is what it is and nothing more.
I need not address or announce to others that my body bares the scars of past surgeries that have left me often fighting for some sense of comfort. Feeling pain anywhere on a scale of 0 to 10 (0 being no pain, 10 being the worst) everyday of your life is having to re-learn how to navigate your life through the sometimes wild seas of everything that comes along with being in pain everyday. But should I wear some kind of badge? Some kind of “Comes with Warnings” label? Would you know walking past me in the street?  No, No, & No!

I know when we do not have all the answers, and  it can be tough on loved ones. For that I am sorry. I wish for them to find ways to manage their own thoughts and feelings on this matter. But I am wise enough to know that this is their own baggage, if you will. Not mine.
This has nothing to do with being right or wrong. My reluctance to share or display my symptoms to those who have no need to be in the know is spot on. For me. I am not comfortable with people seeing or even knowing about the times I am down because I am unable to cope or manage well. Sometimes chronic pain levels take me to a dark quiet room where I alone without any distractions can get a hold again of my pain cycle. Through much-alternative therapies such as imagery, meditation, yoga, relaxation techniques, to name a few help me get grounded again. Sometimes I am not able to get a hold of the cycle as fast as others, yet I have learned to not beat myself up for this and to continue instead and follow the processes that I trust will work. And if that all fails I turn to prescription meds.  But this is really a very private time. This is not how I want others in my life to see me. This is not at all how I want to be known. This IS NOT MY IDENTITY!

This is not who I am!

I am so much more than a diagnosis in a chart. Even those who are part of my team that help me manage my illness can see beyond the medical jargon and look me in the eye. I refuse to be placed or even to place myself into a category of any kind. I have never liked “labels” and I am not starting now.

Defining one’s self by any one or two things can be dangerous. Being labeled, or labeling yourself can be an emotional suicide. Seriously. If I should start thinking and referring to myself in terms of just my medical diagnosis I’d be in trouble. How on earth could I see anything else beyond?

I have too much to do, too much life to finish on this planet. I refuse to waste one more breath than needed on the illnesses I have. They are there. Okay I get it. I can not ignore the many faucets of my symptoms.  But I react in a much different way today than I did some 28 years ago. I know now that to have a knee jerk reaction to a flare-up will be my undoing. I make things worse. Calmly and with great spirit I know what to do and I do not over react. In a matter of hours to days I will be okay. Even if my days are not as “perky” as I would prefer them to be I am grateful to have the wisdom and learned methods of coping with flare-ups now. They are part of my life, but they are not my life. They are not me. I am not my disease.

I get that it’s easy and sometimes maybe even comfortable to define yourself by what your mind and body may have manifested. But this is just all part of life, is it not? This is all part of living and having looked at the alternative long ago when I first began this journey of chronic illness I’ve decided it’s so worth it. This life of mine will be final one day, yet in the mean time I plan on creating so many others ways to be defined by. Anything else but an illness.

I am a woman of means. Many means. A woman who loves fiercely & hard, who cherishes life’s precious moments for what they are, lives for this generous moment and stays mindful of only the now. This is how I would like to be defined. This is just part of who I am. This is how I choose to identify myself. When I meet a new friend I do not shake their hand and say, “hello, I am Illness, I am in pain”. How absurd!

This one little Ole post from Dr Michael really got my mind a buzz with his topic. Like I said above, he was referring to Mental Health but I so believe in body, mind & spirit are connected, not separate from themselves.  I know this theory works both ways. So I am sure he will not mind that I twisted his post to fit my thoughts, that his words provoked, and his clinical antidote to fit a physical health. It’s all relative after all, yes?

I am a grateful woman who has a chronic illness & diseased spine. So be it. Who that has lived 5 plus decades that does not have something a miss? I am grateful for my illness and the pain I have encountered for 28 years as it has taught me so much about myself, about this world I call community that I live in, and live with. I am most grateful for how in tune I was forced to become about my body. I am grateful for the spiritual wisdom that I have garnered through-out the years in finding ways to cope. I am no different from anyone else and for that I too am grateful.
I am a woman of substance.  I am passionate. I love fiercely and I wish for all those in my world to be content and happy.

I am not my illness!

Nor will I ever choose to be.

©tjhelser 2011

Rainy Days on Monday

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Awww… sleep is an amazing remedy. I am feeling better today than I have in several. All thanks to 5 unbroken hours of sleep. I was complaining of an RX that I was not sure what it was doing, but sleep the first two nights it did not bring.

Maybe three times is the charm. No matter. I am not looking a gift horse in the mouth today. I had 5 hours of good sleep which means that maybe today I’ll be productive. Produce something. Whether it be a few cards, do the laundry, or just sit and listen to the rain, I have no clue. But I am going to do whatever I do with a smile on my face today. No need for sunglasses to shelter my red eyes from the light of day.

5 hours! That’s all it took today to change how I feel?  Even though my pain level is where it has been my coping skills are sky-rocket high. I can do this today with gratitude and grace.

Good morning Monday!

Not Sleeping..on Ambian CR

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Second night with RX sleep med Ambian CR. I am sure that my mind and thoughts are extremely altered. But I am not so altered that I am not able to recognize sleep when it does not come.

I am an Insomniac, and have been for over 45 yrs. Even before I had to add chronic pain, Connective Tissue Disease, Fibromyalgia, Spinal Stenosis, and a Cervical Fusion to my resume Insomnia had long been a running problem in my life. Treatments for all the above health issues always included treatment to help me sleep.  If you are daily in pain, coping becomes paramount to survival. It becomes increasingly impossible to cope when you have not slept for days, weeks, months, or even years. When the coping skills are in the bucket the pain level is in the sky. I am  overwhelmed.

The inability to sleep sounds so alien to many I’m sure. How often have I heard well-meaning tips that I prayed would be the ticket to slumberland.  Just close your eyes, stop fighting it, a mug of warm milk, (may I just say, “YUCK!”) are all meant well.  But have done nothing to get me to Mr Sandman.

So with increasing unmanaged pain and sleep being something that continues to evade me my pain doctor suggests AmbianCR. Okay, it’s been well over 10 yrs so maybe my reaction will be a positive one this time around. God knows I best be doing something because Failure to Sleep CAN KILL.

So back on the Ambian Express I travel.

Second night, same trip.  I am awake and I am “high”on Ambian. What an awful experience.  After the first night of feeling well knocked out;  I thought as I climbed in between my nice cool sheets that sleep was going to be welcomed tonight.  And it was for about  two hours, the broken  mind altered restlessness followed me throughout the night and only bringing unbroken sleep again an  hour or so  before the alarm went off.  (preface this with my timing could be way off as I have no clock in my bedroom. I had to give up hour and minute watching a very long time ago.)

I am beginning to think that living through chemistry is not all it is cracked up to be. My mind is racing as usual but the stock car full, racing with my thoughts tonight feels like they are not my own. They are being altered by some drug,  a drug that should allow you to sleep, not be on some random express of drug induced thinking instead. Kind of weird. Very bizarre experience for certain. It’s kind of like being drunk,  It’s definitely not like sleep.

Very weird, very bizarre.