NOTICE! 

BLOG HAS BEEN MOVED

https://ironmaidenehlersdanlos.wordpress.com/

 

As of June 2017 this blog was moved to a Word Press site. This site is no longer up dated. To read new posts, and see original posts, please click on the link above.

Thank you for visiting this blog, and I hope to se you at the new site!

Lilith De' Anu

3-5-2018

 

 

Why I Sing!

Why I sing, and how it helps my chronic pain and depression.

BACKSTORY:

Before the EDS-HT cut short my dancing career, after training from age 8, till I was just turning 21, dance was my entire life. My spiritual connection and expression, my love and enjoyment of life. Dance helped with all the depression and grief that went along with having a grandiose narcissistic, with psychopathic tendencies, for a mother, a paranoid delusional schizophrenic for a biological father, a pedophile for an uncle (who was also my care-give when I was very young), and then all the chronic illnesses and pain that crept into my life in my early teens. Dance kept me sane, then it was gone. A year later my step-father died, the man that literally saved my life from my mother, my biological father, and my uncle, from age 6 to age 21. I was cut loose, adrift. I was having panic attacks and chronic PTSD events, which I did not know were PTSD events at the time. I simply thought I was going or always was crazy.

Other than dancing, singing was my second love. I worked and worked at it. Tried to sing myself asleep as a child, when the many sleep disorders would not let me. I was good at mimicking other singers, but my voice was never any good. I was all stuffed up from chronic allergies and my tonsils were chronically so swollen they often touched across my throat. Kissing tonsils I was told such tonsils were called. Then, at the age of 21, a miracle happened that not only saved my life from possible death or injury, it suddenly aloud me to sing.

That miracle was the removal of both my tonsils and adenoids. I was in the Air Force Reverse training to be an Avionic & Radar Navigation equipment Electronic Technician (yea, I am one of those people who use both sides of their brain LOL). The year before I joined I had had chronic swollen and infected tonsils. Meds no longer worked, and having had such issues since I was very young, I thought nothing of it and simply persevered. When I joined the Air Force they saw the situation, but said I had to wait 6 more months until they had an Air Force medical history of the problem. The ear nose and throat doctor pooh poohed me and refused to take them out, even when they did not respond to meds or treatment very well and would always come back in less than a week. This was the time when the medical community switched from removing tonsils regularly to not at all, for fear of compromising a patients immune system. The doctor said I should just suck it up and let my body fix itself. I noted that it had not done so in 1.5 years, but he said all he could consider in my case was the six months I was in the Air Force, the rest was just my say so. Not valid.

Finally he groaned and agreed to take them out, even though he felt that it was not medically necessary. I grabbed at the chance to end the misery. I woke up after surgery and there was my doctor sitting on the bed next to me, head hanging, and hands clasped between his knees. He barely tipped his head back, looked me in the eyes and said, while wringing his clasped hands, "I owe you a huge apology!". Why I asked. He said, still poised on the edge of the bed, "I have never seen a more deserving pair of tonsils that needed to be removed. They were literally rotting away inside your throat. When ever I tried to remove them they would simply fall apart from my slightest touch. You have the right to be so angry with me." I looked at this man, so full of horror at what he had put me through, he was obviously ready to take what ever I was going to give him. He was so sorry and was taking responsibility for his actions, and was not trying to avoid the consequences, so I told him that it was all okay. It turned out well, and he learned something and was taking full responsibility and acceptance for the consequences of his past actions. I saw no reason for further action. I respected him even more as a doctor now. To say the least he was floored and asked me if I was sure. I was. He was such a attentive doctor till I left the hospital after that conversation! LOL Though, got to say it was nice that I did not have to die for him to realize his mistakes. EDS-HT makes people very susceptible to infections, which can often become chronic in nature. But I was only 21 and I would not be diagnosed with EDS-HT till I was 52, just a measly ten years ago.

Suddenly, to my great joy, I could not only sing, I could, somewhat stay on key. What I was not aware of was that EDS-HT gave me an extremely high arched palate, and very flexible vocal chords. With the removal of tonsil and adenoids, the back of my throat was now clear, full and spacious. The high arch gave me a full round sound, and the flexible vocal chords, as I practiced and gained control, also added depth and a full 2.5 octave range. According to "Songwise, An Information Based Resource For Singers, By Vocal Technique Instructor, Karyn O'Connor" (http://www.singwise.com/cgi-bin/main.pl?section=articles&doc=VocalTractShaping) "Opening the throat [to maximize the resonating space] involves raising the soft palate (velum), lowering the larynx and assuming ideal positions of the articulators (the jaw, lips and tongue), as well as shaping of the mouth and use of facial muscles ... The technique of the open throat is intended to promote a type of relaxation or vocal release in the throat that helps the singer avoid constriction and tension that would otherwise throttle or stifle the tone.

An 'open throat' - a misnomer for a few reasons - is generally believed to produce a desirable sound quality that is perceived as resonant, round, open, free from 'constrictor tensions', pure, rich, vibrant and warm in tone. It also produces balance, coordination, evenness and consistency, and a prominent low formant, which prevents the tone from sounding overly bright, thin or shrill."

TODAY:

"overly bright, thin or shrill' was how I use to sound, now with my spanking brand new open throat, I had a great musical instrument. Now I needed to train it. But there was a down side to having EDS-HT: Stretchy and easily damaged vocal chords. Unbeknownst to me, EDS-HT singers often loose their ability to sing in and around mid life. I once lost my voice from crying and waling when my husband left me and my 2 year old daughter, partially because I was chronically ill and getting worse. Something he never thought would happen (getting worse that is) when we married. Nice guy. Loosing my voice so scared me that I have been extremely careful, and have sought out information on how to protect my vocal chords as a singer since then. It was the best thing I could have done. Because of being so careful, and learning how to sing properly, by studying and taking a general singing class (for nearly 10 years), at 62, my voice is the best it has ever been.

From the time of the tonsillectomy, I sang constantly, to all kinds of music, from folk and pop, to classical, to musicals. If I liked it, I tried to sing and match who ever performed it. I took a fundamentals of singing class for nearly a decade. It was devoted to improving one's voice and technique, and being able to solo in front of people. I even started to sing opera as a form of vocal calisthenics, though I doubted I would ever be good at it. To my surprise, over time, I actually got so good at it that when I sang a piece in class all hell broke loose. Another, very good opera singer, came up to me and asked me "Where the hell did that voice come from!" My teacher was amazed, to say the least.

After 20 years or so, singing finally became my replacement for dance, and helped me regain my spiritual connection and expression, and my love and enjoyment of life. It also helped with all the depression and grief I still lived with, just as dance had done when I was young.

Another obstacle reared its ugly head though. I have horrible stage fright, so much so my throat tightens up, and I break out in a sweat. I dealt with this in class by either closing my eyes, or staring down at my music throughout the song. I never got over it. So, I would only sing alone, or in empty spaces. I never performed or sang in front of people, especially family. Even to this day I can not sing in front of family without choking up, even with my eyes closed. So I did two things: I bought music devices I could use an ear bud with and small enough to take with me on my travels around town in my wheelchair scooter. I sang (and still do) at the top of my lungs as I sped down the sidewalks. I found a place at the local mall that had an outside breezeway that had the same acoustics as a cathedral and would practice for hours there as people passed by, still with my eyes closed, but now I could ignore them as I sang and practiced. THEN, I slowly began to sing inside the stores as I shopped. That was the hardest of all, and still is. I still avoid eye contact LOL I got a local eccentric reputation, and even the local Trader Joe's adopted me as their unofficial mascot! The workers at Trader Joe's come over now and ask me with great concern when I am shopping AND not singing if I am all right! I love them!

With all this public singing I quite often got asked to join church choirs. Not being christian, I declined, but did join a women's vocal chorus called the Etude Women's' Chorus of Sonoma County. I was with them for about three years, but I was never very good. Practicing all my life to recorded music, simply following the melody became ingrained in me. Being a mezzo-soprano and having a 2.5 octave range, I would always end up sing the melody no mater which part of the chorus was singing it. Through everyone off, especially the sopranos, with whom I stood next to! So I finally left.

A few years later I ran into an old friend, who also took the singing classes with me, and has a great voice of her own. She sings with a group of women at a local church (for the acoustics), and they sing 12th century devotional music, known as  liturgical songs, by "Hildegard of Bingen, O.S.B. (German: Hildegard von Bingen; Latin: Hildegardis Bingensis; 1098 – 17 September 1179), also known as Saint Hildegard and Sibyl of the Rhine, was a German Benedictine abbess, writer, composer, philosopher, Christian mystic, visionary, and polymath. She is considered to be the founder of scientific natural history in Germany." - https://en.wikipedia.org/wiki/Hildegard_of_Bingen My friend invited me to join. Since I have always loved her music and wanted to learn it, and the group was an informal one, I said yes.

I loved going and the music was thrilling. One day though, my back was hurting me more than usual. I was not sure I was going to be able to stay for the whole hour and a half of practice. So I took a deep breath and sang with the group for about 20 to 30 minutes. When we stopped I noticed that my back no longer hurt like it did. It was not only now bearable, but quite better than normal. I had heard of singing being good for depression, the immune system, for healing, and so forth, but I had never directly experienced the recently claimed pain relief singing was suppose to give. Granted I still hurt all over, as usual, but the extra, aggravating pain was gone and my spirits had lifted as well. I was able to stay for the whole practice session. Some of the pain came back after arriving home, but most of it never came back that night at all.

In my travels in my wheelchair scooter, I began to take notice of how I felt after I had been singing for awhile, and yes, behold, I was actually feeling less pain and overall better. I had always thought it was the distraction of singing that had done it and being out and about, but now, after many trials in different circumstances I found that singing works nearly as good as opiates in taking the harshness out of breakthrough and new pain, and some of the regular chronic pain as well. This was amazing to me! So much so, I now sing not only for enjoyment, but to also control my pain levels along with my meds. After all these years you think I would have notice, or made the connection, but I simply had not. Most likely because I was still in pain, just less, so I never made the correlation before. What a wonderful gift this has been for and to me!

So after all the above, why do I sing? Well, I sing for a host or reasons, but mostly I sing for the shear joy of of it. These past 47 years of chronic pain, and over 55 years of chronic illness of one sort or another, I have found that one of the ways to survive is to find and create joy in one's life. This is true for anyone, chronically ill or not. Finding the joy in life should be something that we all learn to do and cherish. We need to protect that part of our life with passion, for it is what will get us through nearly everything and make life not only worth living, but a joy to live no mater our life circumstances. You can be poor as dirt or richer than god, but without cherishing and creating joy in life, one's life becomes a burden. At least that is what I have found, and singing is my major way of doing this. It also gives joy to others, another thing that gives joy back to me. It brings me out into the world, connects me to all that I see and that I meet, and have in my life. Singing and music, make life worth living, helps with living it, i.e. the chronic pain and illness, brings joy to oneself and to others, and simply put, it is fun.

So that is "why" and "how", with EDS-HT, I sing .........

EDS Awareness

This is also a very good read. They just did an episode on Gray's Anatomy about EDS. I had the diagnosis in one to two symptoms LOL .... sorry, EDS humor ...... the EDS foundation is trying to spread the word and info about EDS, especially in the media and in entertainment. The Gray's anatomy episode was one of those success.

The follwoing article is really good, and even I learned a thing or two! It really demonstrates and explains why and how I am a walking medical dictionary of disorders and medications. It can seem like an impossibility, and even that we may be hypochondriacs or collectors of label and disorders, but once you see how and why it all relates to each other, then you will begin to understand. At least I hope so.

https://www.buzzfeed.com/zebrazebrazebra/31-random-facts-about-ehlers-danlos-syndrome-v5ff?utm_term=.jyppEzloPl#.fu5zMNVZ2V

1. Inherited genetic disorders

Because each EDSer is different, members of the same family can have greatly varying symptoms. One may live a relatively healthy life with almost no symptoms, while their family member uses a wheelchair and feeding tube.

2. There’s no such thing as “double-jointed”.

Hypermobile joints cause chronic, painful dislocations and subluxations. As we age into our 20s and 30s, this can also cause arthritis, and we become more stiff and less flexible.

3. Connecting the dots…

Until someone learns about EDS, it can be hard for them to connect the dots between their migraines, digestive problems, blood pressure, back pain, and heart problems all being about connective tissue.

4. Born this way.

*worst

5. Pain from 0 to 10 in .5 seconds.

Expending energy, just moving the wrong way, or sometimes even the weather can sometimes leave us in days of pain. Please keep inviting us, because we will go when we can! We want to!

6. Handle With Care

This is especially true with Vascular Ehlers-Danlos Syndrome, also known as VEDS.

7. Inflammation sucks.

Actual heart attacks are more likely with VEDS.

8. EDS and Insomnia

These adrenaline issues are also why we are more prone to anxiety and panic attacks. We are also often up with painsomnia - when we are in too much pain to sleep.

9. POTS

Postural Orthostatic Tachycardia Syndrome, also known as POTS, is very common for those of us with EDS. We often have blood pressure that is too high or too low, and can have dizzy fainting-like spells. Showers and hot tubs can be dangerous for us.

10. Velvety soft skin.

Often described as having the skin of a newborn and joints of an 80 year old.

11. Neck pain.

Having a gentle massage therapist who is knowledgeable about EDS can be crucial. Just another reason we need to spread awareness!

12. EDS and Pregnancy

Younger women with EDS tend to have less problems with pregnancy, but there is still a 50% risk that the child will have EDS, as well. It is a very personal and difficult choice to make, especially in the late 20s and older.

13. Vascular Ehlers-Danlos Syndrome (VEDS) kills.

Find out more information about VEDS from the Ehlers-Danlos National Foundation http://ednf.org/vascular-veds-emergency-information

14. Genetics

There are several different types of EDS, and there can be different types within the same family through mutation. But the symptoms can vary so widely from person to person, that genetic testing is the best way to know for sure.

15. Center for Clinical Care & Research (FINALLY!)

Ehlers-Danlos National Foundation has partnered with the Greater Baltimore Medical Center (GBMC) to establish the EDNF Center for Clinical Care & Research at GBMC’s Harvey Institute for Human Genetics. Open August 2014.

16. EDS & Anesthetics

We can have low absorption of many things - pain killers, vitamins and minerals, and yes - anesthetics.

17.

Also to stretch our bodies.

18. Forgot what I was saying…

It’s on the tip of my tongue! Why am I suddenly so tired and can’t remember anything? Argh.

19. Chronic Fatigue

Chronic Fatigue Syndrome, also known as CFS, affects people will all sorts of chronic illness. Those of us with chronic fatigue are also known as #Spoonies. See Christine Miserandino’s Spoon Theory for more info on that! http://www.butyoudontlooksick.com/wpress/category/the-spoon-theory/

20. Fingers that sometimes won’t fing.

21. Why the Zebra?

22. TMJ can be worse than TMI.

Brushing teeth can suck when your jaw gets stuck.

23. Invisible Illness (for some)

We may not need any assistance one day, and a wheelchair the next, and then just a cane the day after that. Cleaning the house can mean having to rest in bed for a week. Again, see: The Spoon Theory http://www.butyoudontlooksick.com/wpress/category/the-spoon-theory/

24. Digestive problems… gut instinct.

25. Changes

We never know when or where we will be in sudden excruciating pain.

26. Testing, testing, 1 2 3…

This is why raising awareness of common symptoms of Ehlers-Danlos Syndrome is SO important. You don’t know whose life you could change for the better, just by helping them find answers.

27. EDS and Chiari Malformation

Chiari is yet another congenital condition (meaning you’re born with it) that can be common in those with EDS.

28. Slipping ribs hurt.

Can be caused from the way a bra pushes against a rib, cuddling, coughing, hormones, stress, weather, sitting in a particular position for an extended period of time, driving, etc.

29. Compensating & problem solving:

*witty

30. You can help!

Care. Share.

31. What doesn’t kill us makes us stronger.

More information:

Infographics by Natalia Carrasco.

The Spoon Theory by Christine Miserandino can be found at http://www.butyoudontlooksick.com/wpress/category/the-spoon-theory/

More information about Ehlers-Danlos Syndrome can be found from the Ehlers-Danlos National Foundation at http://www.ednf.org

Facebook has numerous support groups and Ehlers-Danlos Syndrome Awareness pages, including http://www.facebook.com/Ehlers.Danlos.Zebras

Five Considerations for Supporting People with EDS

On Facebook recently I found the best list of how to support and understand friends and family that live with this very painful, debilitating, and invisible disease called Ehlers-Danlos Syndrome-Hypermobility Type. Feel free to post this to your Facebook page:

http://www.chronicpainpartners.com/the-invisible-illness-ehlers-danlos-syndrome/

Five Considerations for Supporting People with EDS

1) People with EDS may seem preoccupied or withdrawn even when they appear to be healthy. The introspection might result from fearful anticipation about what the future holds, from managing pain, or having to be careful about all their movements. They may be exhausted and recovering from exertion.

2). As do most of us when our activity is limited, people with EDS experience anger. Since EDS is not curable, the anger is something they must learn to manage. The least the rest of us can do is avoid annoying them further by refraining from telling them what they need or how they might cure themselves.

Those who live daily with EDS symptoms know what they need and what to avoid. For example, getting out of the house and sitting in a park might seem like a great idea to you, but the effort can exacerbate EDS symptoms and bring your friend to a point of exhaustion. When having a bad day they will know enough to stay home.

3) Nonetheless, those with EDS like being invited to go out with their friends. Even if they are not up to accepting the invitation it is important to feel included. If an activity is one they cannot participate in having an option of going along to watch will be appreciated.

4) People with EDS can look healthy even when fatigued or in pain, and their stamina changes from one minute to the next. Activities enjoyed last week can be impossible this week, and sometimes they must cancel plans at the last minute.

5) No one likes being told how they should feel, or that someone else knows how they feel. That is annoying no matter what your health status, but extra grating when you are ill and hear it frequently. Support and understanding are what is welcome.

Chronic Pain & The Current Opiate "Crises" Knee-jerk One-Size-Fits-All Response!

Ugh!!!! Now we have this huge media and government frenzy over the so called "Opiate Crises". Is there a big problem with ODs and other types of opiate abuse and deaths from drugs such as heroin, opiate prescription drugs, and other opiate drugs such as morphine and such? Yes. Should all users of opiates be painted with the same broad brush and treated accordingly, i.e. the same in all cases? NO!

The problem as I see it is that there is currently so little real research and understanding and lots of big claims and finger pointing, when it comes to opiates in general, and management of chronic pain specifically. The same happens to drugs for depression and ADHD. Who really suffers from these knee jerk tall tails and official responses: Those that legitimately need the meds, that's who! We go through hell each and every time these alarms are raised and knee-jerk responses are put in place, and thus we are often chronically under-treated. Part of the problem for many chronic pain patients is that, even today, pain clinics chant the mantra of "it is only over reactive nerves, there is nothing wrong with you physically for you to be in chronic pain." They say this right into the faces of people with Osteoarthritis, Rheumatoid Arthritis, Degenerative Disc Disease, EDS HT, and other diseases where the pain IS caused by autoimmune and other forms of tissue destruction, yet still those of us with these diseases are still shoved over to "it is not real", "just in your head or nervous system", you are fine, nothing is wrong or being hurt, category of pain patients. Thus we are treated as potential pain med abusers because, hey, our pain is nerve over-stimulation, not actual physical pain due to tissue damage, or so they think.

Opiates work! Plain and simple. With nerve pain, the worst pain I often experience, the only thing that touches it are opiates. Nothing else works. Opiates do NOT work as well on inflammatory issues, then Ibuprofen and such meds work better. Often with chronic pain you have both nerve and inflammation, thus you need a mixture, or moving back and forth between two or more types of pain meds. The problem is not the opiates (though I look at them as the gift to humanity that is actually a double sided blade: It does great humanitarian help in cutting suffering, and can, when abused or with personal rare reactions, hurt you as well). The problem is our narrow minded, factory line approach to medicine in the western world. And our one cause, one treatment isolated approach to disease and treatment. These are the problems, not opiates as a medicine. At least I believe so in most cases.

I have devoted my life to the research of my family's diseases (yes plural, EDS HT causes dozens of other diseases with in each person, as well, and can be different from family member to family member). Out of frustration and chronic under-treatment and just plain life long suffering within in a body that is my own private hell and torture chamber: i.e. Iron Median - (yes chronic pain is akin to chronic torture), I have researched all kinds of alternative and accompanying treatments for pain and bodily dysfunctions. These include, but are not limited to: Chiropractic (by far the best for pain and dysfunction); Medical Pot use (does not work for me or my daughter); Acupuncture (also does not work for me. Actually makes it worse); Warm Water Pool Therapy (works wonders); Hot Tub (oh yes that works quite well); Deep Tissue Message (much needed for relief and healing); Relaxation Techniques (wonderful additional treatment); Bio-Feedback (worked well for me); Singing (works almost as well as my opiates on a short term basis, with some residual relief); Distractions (such as reading, watching TV and movies, or other things such as crafts, volunteering, and so forth); and finally but not the least, Mild Exercise and Swimming in a Regular Cold Pool, when tolerated and does no lasting harm (I can no longer do this, which I miss greatly). Most chronic pain patients, if not all of them, over time, have done this research and taken on many of these techniques, but when it comes down to basic pain management, medications are still our first and foremost front line of care. Why, because it is often the most effective, both in degree and in length of time of relief.

One final thing. Chronic Pain, by its nature, is a life changer. Unless there is treatment for it go away or be fixed, or has some sort of time line (like "normal" Fybromialgia seems to have), your life is permanently altered, and will never be able to function like you did before. I think people, like athletes, performers, and people in high stress and powerful jobs, over use painkillers because the need to be as high functioning, and pain free as possible, so that they can do their job. We, as a society, do not take lightly to human frailty, nor illness, dysfunction, or disability. Our society refuses to meet or make room for the needs of those who are not in top peek working order, i.e. a good little cog in the machine. So to not fail, to not loose your job, position, or career, you end up taking massive doses of painkillers in order to function as if there is nothing wrong or going on with you and your body. As a culture, we scorn those who "fail", who do not reach the "gold", who do not win consistently, what ever race we imagine for them. Not only is there social stigma associated with this, but also financial disaster, i.e. punishment, as well. So, of course some people reach for those opiate meds, but they have this double edge: the more you take, the more you will need next time, until your body finally backlashes and actually starts to cause more pain with each increased dose rather than giving you that relief you use to get, but now you are hooked, addicted, trapped. At least that is what I have observed.

To get around this you must first accept that your life has changed and that this is now your new normal. Live with it! Second, choose to reject the medical community and the pharmaceutical industry's deceitful allure of a pain free life where everything goes back to the normal life you had before chronic pain. It is an illusion, one born out of ignorance (medical community) and/or greed (sellers and manufactures of those drugs). Doctors and the medical community are all too human, but they are catching up, but the pharmaceutical industry, those we depend on for our life saving meds, have only the bottom-line as their primary and often only concern, even if it kills you for them to do. I hate the term "Big Pharma", because it casts all pharmaceuticals, and the companies that make them, into this two denominational evil villains, with no redeeming value what so ever. This is not true. Most of use that are chronically ill would not be here with out pharmaceuticals, and the companies that make them. Diabetes comes to mind when I remember this bit. So to all other rare and not so rare diseases that use to kill so many people, especially children. So I do not use the term "Big Pharma" because it is unjust, and does not depict the whole truth of the matter.

In summery, we need to walk this new path carefully, least we do more harm, and even possible deaths, by brushing all opiate users as "less than". To equate a heroin user with a well functioning and med managing opiate user who is in chronic pain and has done so for decades, as equals and who need the exact same draconian handling, is a disaster waiting to happen ....... yet again!  

Pain - Such Complexity In Such A Little Word!

What most people do not understand is that there are different kinds of pain. To name a few:

1) Acute Pain is pain that is because of an injury, it is really bad, and is pain you have now, but as you heal, it lessons, and if lucky, it goes away;

2) Residual Pain can be nerve pain (neuropathy) from damaged or trapped or pinched nerves, Surgical trauma, Neuroma formation which is disorganized growth of nerve cells at the site of a nerve injury, and so forth;

3) Then there is Chronic Pain, and this can be caused by a multitude of causes, including Residual Pain.

Some chronic pain may be over sensitive or over-amped nerves or brain receptors, but a significant amount of chronic pain is "ongoing injury & re-injury, degradation, malformation, destruction, & damaging" of tissue and bone. Chronic pain is the result of these on-going injuries and tissue destruction caused by many different kinds of diseases, disorders, and malfunctions with in the body.

You can not treat all pain the same way, and with continued tissue damage, you can not just simply be stoic, especially when the spread of damage, as you age, increases, thus involving more nerves and tissue, and encompassing larger and larger areas of the body. Chronic pain takes many different types of treatment, different types of meds, different types of therapy, different types of surgery, and so on, all of which may change day by day or hour by hour, 24/7, 365 days a year. It can be a constant, ever-changing juggling act.

After decades of doing all that juggling, and managing the best you can, it may get to a point where none of that helps or works anymore, like it has in my case after 47 years of juggled management. Nothing works anymore, so now we have to look at pain medication changes and increases. I do not like it, it concerns me greatly, but after trying to find something other than more and stronger meds that would make a difference for the past 5 years (after 41 years of management), I have to consider going on time released morphine. So it has finally come down to either do that, or put a bullet in my brain pan. Torture is torture, whether it is done to you by someone else, or is done to you by your own body. You can only live so long like that before it completely breaks you down physically, mentally, emotionally, and spiritually.

UPDATE: Saw my doctor about the need to change meds and asked about possibly going on time released morphine. After a long discussion about the nature of pain and opiates, and new studies about how they both work and interact, we decided that I would be best served by simply increasing my Tylonal/Codine #3 from 2 pills a day to three. That was last May. My increase in meds apparently jumped me up into the category of pain med user that the government deems needs watching with the passing of the CURES Act a few years back. More on this new wrinkle in my next few blogs.

Personal Medical Advocacy & The Doctor Patient Working Relationship

As witnessed by this blog, my life has not been easy, especially my medical concerns. My mother, the matriarch of our family, was a classic Grandiose Narcissist with Psychopathic tendencies.  So she never wanted to be upstaged, not even by her child, especially a girl child, when it came to attention seeking for her medical issues. The conditions I and my daughter have run through the female line of our Sicilian family, but this was not yet known when I was a child, so my mother took my medical issues as an affront to hers, and at worst a form of competition. For example, two years after a diving accident left my spin greatly sublexed, and was beginning to cause chronic pain, numbness down my left leg, and black outs at the age of 15, we went to see a chiropractor for the first time in our lives. The doctor looked at our x-rays (mother and I) and told my mother that though her spin was slightly curved, she was in good shape, but I, on the other hand would be in a wheelchair by the time I was 30. Being a dancer and training for a career in dance since I was 8 years old, this was horrible news, to say the least. My mother's reply to this news: "Yes, but what about me, what about me?". The poor confused doctor explained it all once again, emphasizing how well she was despite the slight curvature, and how direr my condition was, and my mother, bless her narcissistic heart, said, "Yes, I understand that! But what about me, my spin looks worse? What about me?"  The doctor, now in shock looked at my mother, than at me, than back at my mother and said "I just told you that your daughter will be crippled in the next 15 years if she does not get immediate treatment for her damaged low back. Doesn't that mean anything to you? You are fine, but your daughter is in need of treatment right away." My mother looked at him with confusion on her face, then suddenly realized how she looked to him, and suddenly tried to quickly backtrack and feign concern for me. This was not the first time she treated my medical needs as an insult to her, just the most egregious at that time. Later, about 2 years or so, she came in, saw me laying on the floor in the living room, stretching, and pronounced that she could no longer afford my chiropractic medical treatments and that I would have to learn to adjust myself. Two weeks later she came home with my older brother, a prodigy on the guitar, toting a brand new electric guitar and amplifier. My step-father was angry, stating that we could not afford the several thousands of dollars the equipment cost, but my mother insisted he needed the upgrade to promote and support his talent. I sat there stunned, finally knowing fully what my mother thought of me and how little she cared about me or my career as a dancer. I never told my step-father, so afraid I was of loosing him as well, should this cause him to leave her and us.

The reason for this sorted story? To show why, and how often, we need to become our own medical advocates. If your family is there for you, that is great, but often those with undiagnosed and/or difficult medical issues either never have or loose the support and advocacy of family and spouses, especially true for women. Study after study shows that when men become chronically ill or disabled, their wives tend to stay with them more times then men do with a disabled and/or chronically ill wife. "Indeed, research suggests that ... women are more likely than men to be victims of what's known as partner abandonment. A 2009 study published in the journal Cancer found that a married woman diagnosed with a serious disease is six times more likely to be divorced or separated than a man with a similar diagnosis. Among study participants, the divorce rate was 21 percent for seriously ill women and 3 percent for seriously ill men. A control group divorced at a rate of 12 percent, suggesting that if disease makes husbands more likely to split, it makes wives more likely to stay" -  http://www.oprah.com/relationships/why-men-leave-sick-wives-facing-illness-alone-couples-and-cancer#ixzz4O2VJaokJ and yes, this also happened to me with my now ex-husband.

So, when we become disabled and/or chronically ill we often have to go it alone.  Not only do we often have to go it alone, we are often forced to fight with doctors, nurses, specialist, insurance agencies, and benefit programs, to receive the best care we are in need of and are entitled to. It took me a long time to both trust myself and to confidently speak up for myself and my needs. I think having a disabled child as well helped with that development. I may have been raised to not fight for myself, but that did not keep me from fighting for my daughter. Before the internet, I spent hours and days in the library combing through medical journals, the professional edition of the Merk Medical Manual, and the PDR (Physicians' Desk Reference of drugs and medicines). I learned a great deal. I became educated in the ways the human body is normally and the ways in which mine and my daughter's were not. Back then if you came into the doctor's office with this type of knowledge you would be pegged as a malingerer, especially if you were a woman, let alone an over weight woman. If you were on welfare as well, forget it, they dismissed you completely. The more educated you became, the harder it was to work with your doctor. I was all those things: educated, smart, female, over weight, and on welfare because I could not work. So what I would do is pretend to be less smart and educated as I was, so as to not challenge the ego of the doctor, and tried to ask leading questions and such, to get us in the right direction. It was both exhausting and galling. The funny thing though is that as the diagnosis and positive results began to pile up, I was still treated like a hypochondriac imbecile by many doctors and other medical professionals, even to this day.

Because of all of this, my daughter and I have learned to interview new doctors. When we had to change our primary after our beloved doctor of 20 years died suddenly, we decided to interview prospective doctors rather than simply trying them out. And yes, we told them they were being interviewed. It set the possible relationship on the right footing from the get go. Our second interview ended up going so well, we feel in love with him, AND he with us. For the past five years we have had a magnificent working relationship. Yes, a WORKING relationship. We are partners in my and my daughter's medical care, and it works wonderfully! And because of the success of this relationship, I have become more confident, even outwardly so, with my knowledge and my autonomy. It is hard to advocate for yourself when you must rely on the good will of your medical team, and it can often become a battle of wills, especially with those medical professionals who are so threatened by you that they are willing to lie, in writing, about you and your condition. This has happened to me and my daughter more than once. I have successfully had such things ex-sponged or circumvented when they have happened, and I advise that you should always challenge such actions, for it will make getting the help and treatment you need easier in the long run.

These days, with the internet, we have access to so much more information, though a lot of it is junk, or badly created. To suss out the good from the bad, stick to medical journals of high repute, that doctors and researchers look and refer to. Pub Med at the NIH (National Institute of Health - https://www.ncbi.nlm.nih.gov/pubmed) and the CDC (https://www.cdc.gov/) are great places to start. From there, there are the New England Medical Journal and Lancet magazines, as well as specialty magazines for each field of medicine and often for particular medical conditions. Often I use Wikipedia to get me started and to give me a general overview. I of course take what I read in Wiki with a large grain of salt, but often the info is good and can give you an overview of what you need to know and can take to your doctor. From there, there are footnotes in the Wiki entries, with links to actual medical journals and reports for both better study, and to asses the accuracy and validity of their claims and studies. Learn about what makes a good research study and what does not. Be analytically critical of all you read, and what ever your medical team claims or says. Do your own research and be armed with well sourced knowledge. Also, if possible, train someone to be your advocate if/or when you are not able to be. My daughter and I advocate for each other all the time. We go to doctor visits together, and to medical procedures as well, so that we can advocate when needed for each other. 

Having a good and honest working relationship with your medical team is paramount to having good medical care, and can even save your life. It is your life, your body, and no one else has any rights over it. Remember that when visiting a medical professional. You need not be rude or arrogant, that is a given, but you may often have to stand firm, and even ask for a second opinion, or to change professionals. Also, your responsibility in a working medical relationship is to stay informed, to be in contact, and to not take your doctor for granted. Most medical professionals went into the profession to help people, but they lack the training in working relationships with their patients. You will need to train them and show them that you can be trusted with such a relationship. Doctors are also human, so treat them as you would a friend or family member with the same respect and kindness, as well as telling them how much you appreciate them and how well they are doing. They need to hear this as well, and makes working with you easier for them. The bond between you and your medical professional can and will become stronger, and the both of you will benefit from it, and so too, will your medical care.