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.    

Why the need to share my life with others

This post was begun last winter, but was never published. Why? Because this last year has been hell on wheels in both good and not so good ways. Last winter and spring saw the joy and stress of a wedding in the family. My niece, to be precise, who is more daughter than niece. This summer was awash in the increased inability to breath, and all that comes with that. And here it is now fall and Halloween is just around the corner. It seems that my life is becoming this roller coaster ride more and more so with each passing year. And since I seem to have a breather at the moment from that wacky ride, I think I should finally post several of the blog entries I have been holding aside till now.

Here is the first, from last winter:

At the beginning of August 2015 I expressed on Facebook, to family and friends, how I had a growing need to share my and my daughter's life with them all. I felt the need to show the reality of it all, the need to be understood. It was scary, and writing about it, creating the list was often like smashing one's fingers in the car door. It hurt. It hurt to see it, write it, to have to pay attention to it all at once. Normally we ignore what is not being a squeaky wheel, and "that" is how we do it. "That" is how we survive. So writing it down, having to organize it all, THAT was sheer pain, emotional pain. And it still hurts. In some ways I am in shock. I keep seeing the vastness of it and mentally shaking my head, saying over and over again "That is not possible! That just can not be real, that can not be our reality! No one could survive that, let alone decades and decades of it!" And I haven't even listed all the endocrine and family Metabolism problems. Yet it explains how I feel now and the quickly growing incapacitate that I am going through. Soon Mulu will have to bath me because that is becoming an issue. She already has to brush my hair because my hands, arms, and upper body are in so much pain, and dysfunction. Most of you do not know, but as a child I was always moving. I danced, and cavorted, stretched, twirled all the time. Even sitting I was in motion. Now I sit perfectly still, for doing so minimizes the pain that is all over my body, even the soles of my feet and palms of my hands, hurt all the time. These days the emotional suffering is as bad as the physical. I cry because I want, need a hot bath, but can not fit in my tub. And if I do manage to sit in it, I can not get out without wrenching my back, and often throwing some of my rib heads out. I often lay on the couch dreaming of hot bath water. Showers, though great, just do not cut it anymore. So it is difficult to see my life diminish more and more everyday, and to do so virtually alone. That, I think, was the impetus to share the reality of our lives with all of you. That is why I am writing this blog.

I have been thinking a lot about all that everyone has posted to me this past week, as I had my emotional melt down. Thank you, by the way LOL. One friend said that looking for a "heart connection" via FB is probably not a good idea. I agree. But that is not what I was seeking, though that did come into it afterwards. What I was trying to do was be seen and to be heard. Do you know how many times I get "But you don't look disabled!", "You don't act disable! Good for you!", "You seem to be handling it well! You are so happy and cheerful! How wonderful!", or even "Well you don't act or look disabled, so it must not be that bad." Now these come from both strangers and friends, mostly unwittingly, and even from doctors and therapists. It seems people have the need to diminish the severity of your condition and life, to look at the bright side, as if you are not already aware of that. It makes them feel better and they think they are helping, or that that is their job at the moment. Denying a person's reality makes you feel better, but only harms the person you are speaking to. Empathy and compassion are more important and helpful than trying to "fix it", unless you are asked to.

So, writing this blog was born out of the realization that my needs are not being met, unreasonable expectations are being made of me, and people get frustrated or disappointed in me for not performing as they think I should, because they are unaware of my actual life. Like when I go to sleep and when I wake and thus have an inconvenient schedule, or how hard it is to be on time because I am fighting massive pain and/or exhaustion, or I simply can't breath and move fast at the same time. I realized that by not opening up about the realities of my life I was doing myself a disservice. It is not about "Oh pity me", though it can feel like that when speaking up, it was and is meant only to make people aware that when I say I need help, that if I do not get help, then what ever I needed help with never gets done. Or I injure myself trying to do it by myself. It is also so very hard to ask for help. I hate it with a passion, but as I get older, I need to. I am also so very tired of having to explain myself, my actions, my choices, and so forth, over and over again to people I know and love. I hate burdening people, but I also realize that my pride also gets in my way when I do not share all this.

Also, another reason for the "dreaded list" is because when people ask you "How are you dong." and you tell them honestly, even just a little, you soon realize they did not want to really know. So I and others like me say "Oh I am fine." Even when we are not, which is usually the case with chronic illness and chronic pain. There is only levels of bad and not as bad, never "fine". I had a friend once who would ask how I was, and when I said that I was doing better they would get very happy. But when I would say that things were bad she would get upset with me, or confused. I finally figured out and asked her if she thought that when I was better, that meant I was "getting over" my medical issues. And yap, that is exactly what she thought. I had to explain that "better" was relative and that I would never really be fine, but that fine to me meant that I was tolerating all that I had to deal with better than usual. After she realized that, our whole relationship change and improved.

So that is my thoughts on all this. And, though it was hard, and I cried more than once, it was good to write that long dreaded list, and a lot of good came out of it because of all of you that replied and acknowledged my situation. Thank you all for that. It got me through it!

The Gauntlet

Everyone has an opinion of what you are going through and experiencing. Some are good hearted and attempting to assist, but often they do not understand that all they are doing is ignoring what YOU say and end up invalidating your own truth. Some just like being in control, or contrary, or simply "right". Some, and these can be the worst, are experts on the subject or in that field or tradition, and they simply talk over you, sweeping away with a irreverent hand your attempts to disagree and convey what it is you are experiencing and what you know. I find this true most often with doctors. Every new doctor I see brings anxiety and stress over the anticipation of yet again training and educating a new doctor. This is particularly difficult if the doctor is just evaluating your condition, such as for a disability claim.

All in all it can feel like you are running a gauntlet between bombarding opinions, expertise, research (or lack there of), folklore, current or old assumptions, that you no longer know what to think or how you feel. At some point you just have to simply trust your own personal learned knowledge and experience when it comes to you and your own body. This is something we, especially women, are usually taught not to do. Often trusting ourselves and our perception of our reality is badgered, even beaten out of us, especially by those in authority, and/or sanctified institutions, like the medical community. Trusting what you know to be true for you is not only important and healthy, but can save your life. No one lives in your body but yourself, and in the end you are the expert, the authority when it comes down to it. Yes, you need to be open minded, flexible, and willing to try new things, but you are still the authority over your life and your reality as you experience it. Nobody else has lived your life, learned what you have learned, been where you have, know what you know, to the deep intimate and viscera level, with you and your body, that you have. Be open to self examination, self truth, and honesty, as well as to the possibility of being incorrect, or needing to learn more, or a different point of view, but never, ever give up your personal authority, and autonomy. That has been a hard lesson to learn for myself, else self doubt, anxiety, and chronic searching outside of your self for the answers, rather than trusting what is with in, will plague your life.

Sometimes living is so damned hard for me ...

Sometimes living is so damned hard for me. Sometimes .... actually quite often .... okay, every day ....... I loose hope, I dread the future, I contemplate leaving this mortal coil, this day in and day out of living life under physical and mental siege, but then something like this comes a long. And even though it is about death, dying, and loosing a loved one, it is also about not loosing sight that life, in general, and the world we live on, is beautiful ...... and maybe, just maybe I will stick around a bit longer and enjoy it while and how ever I can ....... 

https://www.facebook.com/humanthemovie/videos/468301476675049/?fref=nf

The gifts just keep on coming -----

The gifts just keep on coming ----- Spent nearly nine hours in bed curled up in a ball moaning and whimpering over an IBS flair (Irritable Bowl Syndrome) all day Wednesday the 30th. A lot like mild to moderate labor (even comes in waves, last for about one minute to five, with one to two minutes between bouts on average - FUN!). Major difference is that the pain is concentrated at the area of the beginning of my transverse colon, rather than all over the abdomine, as is true for labor. Did Bradley labor contraction technique for the spasms, still works like a charm. After 4 hours trapped in bed with this called my son-in-law, he came feed the cats, fetched me my codeine (risky, this slows down movement in the bowl) and water. Soon after, my daughter came and spent several hours taking care of me: Making sure I had something mild to eat, that I took my insulin, checked my blood sugar (the prednisone I am on right now for the fun visit to the hospital for Asthma last Monday, must be monitored for blood sugar rise every few hours), refilled hot water bottle, listened to me make bad jokes, made tea, and just visited. ..... so upside, got the gift of several hours of quality time with my daughter! LOL

We must count ALL our blessings!  ;-)

Lilith

ASTHMA: Not the emotional, dweebish, nerdy crutch we still think it is!

ASTHMA: Not the emotional, dweebish, nerdy crutch we still think it is. Even the entertainment industry believes and uses the crutch stereotype as a plot device: EXAMPLE - Guy is nerdy, insecure and afraid, finds courage (usually because of a girl/woman, or proving his manhood in front of other males, especially adult males), and at climatic peak he pulls out inhaler, looks at it, gets determined and enlightened look on face, throws inhaler away, and saves the day.

Now exchange inhaler with insulin, heart med, or any other life saving medication with the inhaler (an inhaler is a life saving medication, by the way), and you get what I mean.

So why write about this now, you ask? Well you have probably already guessed:

Since this last August, when the seasonal trees started shedding their pollen and some weeds, like ragweed, did so as well, I went into my annual asthma season, which usually runs Aug- Oct. This year, with the help of smoke from all the fires in the neighboring county of Napa, it never stopped, and actually continued to get worse. Then this past week, it finally hit a critical breaking point. Just before Christmas Eve I started to have problems with shortness of breath, and typical asthmatic wheezing when ever I moved or used my arms, bent over, or basically with exertion of any kind, small or large. By the time Christmas Eve came, it was bad, but I decorated that Christmas tree!Oh yes, I decorated that tree! I was bound and determined to do so. No slowly dying from lack of oxygen was going to stop me and my tree decorating!

Come Christmas morning and afternoon, I spent the day sick in bed feeling unidentifiably sick. Kept fading in and out. Could barely get up, let alone breath very well. By Saturday I was struggling to breath even when I was perfectly still. I could not get enough air into my lungs because I could not expel the air already deep within. It was trapped there, and would not let the lower half of my lungs expand. It was as if my lower lungs were filled with wet soggy cement.

Me being the stubborn person I am, and having lived with this asthma for 50+ years, I kept trying all my personal, at home, treatments that usually work: Using my two inhalers several times a day (Albuterol - a dilator, and Dulera - a steroid anti-inflammatory); Going out into the cold damp air; Inhaling hot steam from a rapidly boiling kettle; Taking a hot shower, and so on. But none were working very much at all this time. Finally late Sunday afternoon, I could barely breath in or out. I even started to black out in the shower at one point from the lack of air, so I tried one more thing: Going shopping in my Wheelchair/Scooter in the damp dark cold air after sunset, and when I got home, I was better.

Though I felt better after shopping, I tried to sleep, but my breathing would slow, then stop, and I would wake every hour or so gasping for air. Gasping for air like that when you are still asleep jars you awake violently. Not at all pleasant. By 7:00 am Monday morning (the 28th) I could not move at all as I lay in bed, for if I did, I would loss my breath completely. I had sent an e-mail the night before to my doctor explaining that my asthma was having a serious flair up, and laying in bed that morning, after many tries, I managed to roll over, grab my phone and text him that I was going to emergency as soon as my care-worker (she, who is the boss of me) came at 11: AM.

Now here is where it gets weird. My doctor's nurse called and said that my doctor wanted me to come to the office for the treatment, instead of emergency, so that he could see me. The nurse wanted to make an appointment or give me the number to call back. I was stuck in bed, unable to move anymore, even to fetch a pen and paper to write upon, and told her so, and that my care-worker would not be here at an exact time. I asked her to call me back in an hour. She never did. Worse yet, hours later, I called the Kaiser advice nurse (after layers and layers of robo phone directions), and was harassed, delayed and even questioned as to whether or not I really had a problem. The hardest part of it was that I had managed, with my care-worker's help, to bath, have tea, and eat, so that by just sitting I could breath shallowly and maintain a low level, but not dangerous, saturation of oxygen in my blood. It prevented me from wheezing, but I had to speak softly and low. I dare not move, because my lungs would seize up immediately. I quietly explained this to the nurse, but she seemed to not believe me, and harassed me about what was my condition, abilities, and that she could not put me through to the doctor's office, and asked me several times why I could not simply go to the emergency. I explained that emergency would just send me to my doctor's office without treating me. Been through that before. Plus he had requested that I come to the office instead. I was trying to do what my doctor advised, but the nurse was fighting me over the need to even contact my doctor at all. As my breathing became a bit worse under the mounting stress, and I was getting upset, and the lack of oxygen was rattling my brain, she continued to argue with me. Finally I gave a weak whaling cry and said that I was on the very edge of screaming from frustration, and could she please just switch me over to the office or call them herself and tell them to call me! Which was my original request when I called 10 or so minutes earlier in the first place! She said that at this point she could only send them a message since they had already left for lunch.  I left a message saying I would go to emergency if I did not get a call back from them when they returned from lunch at 1:30.

In the emergency room, triage basically sets these conditions as priority: heart, lungs/breathing difficulty, bleeding out, head trauma, and acute injuries, the rest are assessed for severity. This nurse knows that, yet she kept me on the phone arguing with me over my simple request, thus risking my life and delaying treatment.

In the end I had my care-worker take me to the hospital and rolled into my doctor's office. I was in one of theose blue wheelchairs Kaiser has, barely breathing or able to talk, or even using my hands. I was now experiencing a bit of hallucination, with dizziness, and some vertigo, and yet I still had to wait half hour to be seen by the nurse, and have my vitals checked. I had hoped to reduce the amount of wait time if I went straight to my doctor's office, rather than going through emergency first. I quickly regretted not going straight to emergency. When the nurse came, we had to go through the procedure of recording vitals, then went to the exam room, talked some more, waited for my doctor, and then was finally able to see him. I had been in the office for approximately 45 minutes before seeing my doctor, and I still had not had a breathing treatment. I knew I was tupdset and worried, and that I was fading quietly away, unbeknownst to anyone around me, yet I did not realize just how upset and distraught I was until my doctor, with his lovely bright smiling face popped into the room from around the door and greeted me. Immediately upon seeing that wonderful face my inner child came leaping to the surface, with a rush of emotion that cried the equivalent of "Daddy is here! He's going to save me!" It took all I had to maintain my calm composure and try not to stand, fall into his arms and cry piteously upon his chest ... I covered it well! LOL   Then, and only then, after we talked treatment options, did I got my breathing treatment. I do not fault my doctor in any way for this. He was relying upon his support staff to asses the situation and my condition. If he had known how serious it was and how quickly I was fading away in silence, he would have treated me accordingly. By the time he came in, I was too sick and fighting too hard to stay conscious, for me to be able to tell him the real condition I was. I was just so happy and grateful he was there that I eagerly worked with him to get to the breathing treatment. When you can not breath, like a person drowning, you become increasingly quiet, seemingly calm, and your movements slow down, because you are using all your strength and focus to get as much air into your lungs before you drown or pass out. Most people see this and do not know a person is drowning, or as in my case, slowly losing their ability to breath on their own at all. This is why having an advocate with you is always a good idea, often a life saver. With the condition I was in, and the deteriorating effect it had on my brain's ability to function cognitively, and to communicate, I was not able to convey my needs and my situation on my own well enough. It cost me time, and possibly many brain cells, and who knows what else, let alone the frightful emotional experience of having it drag out for so long a time before getting treatment what so ever.

Like I said, I do not blame my doctor. I do blame the advice nurse on the phone, with her lack of compassion, understanding, and her argumentative harassment of me on the phone. Harassment that worsened my condition both physically and emotionally that by the time I got to the office I was barely able to hold it together and make my needs known, and put me at a greater risk. I also blame the staff of my doctor's office, though it grieves me to do so. Knowing that I needed a breathing treatment, and that my doctor requested they call and get me in ASAP, they let the matter slip through their fingers by not calling me back in an hour as they said they would when my care-worker was there and could help arrange the visit. They called at 10:AM, I called the advice nurse around 1:30 PM when they failed to call back, and my care-worker had managed to help me get up and functioning. I waited till 2:30 or later before leaving for the doctor's office. From the time they called me, to my arrival at the doctor's office, nearly 5 hours had passed. Yer nearly another hour passed till I actually had my breathing treatment. This was and is unacceptable!

I sat there breathing in the misty medicine of my breathing treatment for about 45 minutes. About 25 minutes in, my lungs, which were still not expanding downward, but only sideways out, below my ribs, and painfully raising my chest to the max, suddenly let go, and I took my first easy deep belly breath since this all started days ago.

My doctor explained that the two inhalers I had were the best (the breathing treatment is a concentration of those meds over a longer single treatment period), and really the only place I could go from here was to take a short limited treatment of Prednisone (a powerful steroid). I was not aware of this limited amount of choices before for severe Asthma, and it worries me still. The problem with taking Prednisone is that one dose sends my blood sugar into the 300 to 400s (100 is normal). As a diabetic, this is very dangerous. My doctor looked at me, and holding out his hands clutched in a fist as if holding something, palm side up, bounced one hand in they air saying "blood sugar", then switching to the other hand bounced it in the air gently, saying "being able to breath", repeated this two more times, stopped, looked at me and said "I think being able breath is the priority here. We can increase your insulin to deal with the side effect of raised blood sugar, but not breathing will kill you." We both laughed (I coughed and laughed actually), and I picked being able to breath as my choice ... I love my doctor LOL.

The long and short of this: Asthma is a lung DISEASE, not an emotional crutch, or just allergies. It often gets worse with age, and is a major killer. According to the CDC: The number of people with asthma continues to grow. One in 12 people had asthma in 2009; 185 children and 3,262 adults died from asthma in 2007.

My asthma is part of a complex auto-immune cluster of disease linked to eczema, and air born allergies (A pandemic of ailments called the "allergic march" -- the gradual acquisition of overlapping allergic diseases that commonly begins in early childhood - http://www.uphs.upenn.edu/news/News_Releases/2011/08/allergic-march/). They had all improved greatly when I went gluten free, but this flair up, the first in a decade, reminds me that they are better, but not gone. I have even had a small patch of eczema flair up during the past month as well, along with the increased asthma.

So when you see a movie or TV show that uses asthma as a character's plot device crutch, or someone besmirches someone with asthma in your presence or social network, PLEASE inform them that asthma is a lung DISEASE and can be very deadly, very quickly, and you can not get over it by simply choosing to and throwing away your inhaler.

Thanks for listening, Lilith

Happy Holidays!

Happy Holidays everyone. I have taken a hiatus from posting and finishing part 2 of the secondary list for the holidays. Not enough spoons (Spoon Theory), and this final part delves deeply into genetics, and bio-chemistry, both heavy subjects. I plan on getting back to writing after the first of the year, but wanted to touch base with you all, be you one or many, and wish you a Happy Holidays and New Year.

Lilith

BUT WAIT! ..... There's more! Part 1

Yes, there is more! The "Dreaded List" was only about what my daughter and I deal with because we have Ehlers-Danlos Syndrome Hypermobility Type (EDS-HT).

On top of all the things that I listed for our EDS-HT condition, my daughter and I also deal with 2 major autoimmune diseases and 3 immune/possibly-autoimmune diseases, as well as an Endocrine System Metabolic Syndrome that effects our Thyroid, Pancreas, blood sugar, and so forth, and runs through the female line of my Sicilian family. I am not talking about just diabetes, but a whole cascade of hormone problems relating to the Endocrine system as a whole. As far as we can discern, these categories do not belong to the vast array of disorders that are linked or caused by EDS-HT, even though there is mounting evidence that EDS-MT may, in of itself, be an autoimmune disease as well. These categories seem to stand on their own, though they do cross over in some cases, such as with the thyroid.

AUTOIMMUNE DISORDERS:

1. Hashimoto's Thyroiditis: "or chronic lymphocytic thyroiditis is an autoimmune disease in which the thyroid gland is attacked by a variety of cell- and antibody-mediated immune processes, causing primary hypothyroidism (low thyroid). It was the first disease to be recognized as an autoimmune disease. It was first described by the Japanese specialist Hakaru Hashimoto in a paper published in Germany in 1912." - https://en.wikipedia.org/wiki/Hashimoto's_thyroiditis (Hashimoto's comes under both our autoimmune list AND our endocrine metabolic syndrome list).
   
   My daughter and I seem to need to be treated with not only T-4 (standard thyroid hormone), but T-3 as well (the hormone that our body is suppose to convert T-4 into so that it can be used, but does not). Why this is so is still a mystery, and the use of T-4/T-3 to treat low thyroid is still a controversy in the medical community, but many studies and many more personal antidotes show that those who take both like it and say they do better (as we did).T-3 when taken with some SSRIs (anti-depressants often called: Selective serotonin re-uptake inhibitors) help the anti-depressant relieve depression better. Depression is a major symptom of low thyroid to begin with. According to the American Thyroid Association: "The extent of T4-to-T3 conversion varies from one organ to the other, but in some organs, like the brain and pituitary, this process provides most of the T3." In light of the controversy of T-3 treatment, I find that statement especially interesting. There is growing research about an auto-immune disorder that swells the front portion of the Pituitary, and its role in a cascade of auto-immune disorders throughout the endocrine system in some people and their families. This "cascade of auto-immune disorders" nearly matches the auto-immune diseases that my daughter, my family, and I have, which may explain why treating our Hashimoto's with T-3 is successful. The down side is that currently the only way to diagnose this particular pituitary disease is by autopsy. Not something we are yet willing to personally sacrifice at this time ..... at least while still alive, that is ....
   
   Another unusual connection we found was that when we discovered the Celiac disease we have, and went on a gluten free diet, my daughter's thyroid eventually recovered and she no longer has to take thyroid medication and does not seem to have any of the symptoms any more. Researching this the other day I found that this is not new nor abnormal. There are still studies going on about it and why, but there seems to be enough reported occurrences to warrant further study and hope for those in the early stages of Hashimoto's. The link between Hashimoto's and Celiac disease is already well established. Unfortunately, my thyroid was apparently to far gone to recover, and still gets worse with each passing year despite sticking to a strict gluten free diet.
   
   Some of the symptoms my daughter and I, on the average, suffer(ed) from with our Hashimoto's are/were:
   
   • Low Normal Thyroid Level Test Results: I went over 20 years un-diagnosed and untreated for my Hashimoto's because my tests always came out very low normal. Virtually right on the low /normal thyroid line. I had studied the disease and the symptoms, knew I had it, but was ignored by all my doctors because of the test results of my thyroid levels. This is particularly disturbing in that, according to Johns Hopkins Medical of Baltimore: "Untreated hypothyroidism may lead to anemia, low body temperature, and heart failure." Long after I was finally diagnosed my Endocrinologist said that when he was a young doctor he was a purely numbers man, but after 20 years he became a doctor who looked at the numbers, then asked the patient how they felt. He would then, depending on this info, do a trial hormone T-4 treatment and see if it helped and go from there. It was from patients like my daughter and I that he learned that the numbers could be deceiving. So deceiving that in my daughter and mine's case, she had low normal, but tested positive for the anti-thyroid anti-body, and I, who was by then showing very low thyroid levels, came up negative for the anti-thyroid anti-bodies (which 15% of all Hashimoto's patients seem to do). We now joke that if there is a % of patients that will not show up on a test, even though they have the disease, I will be in that percentile. It happens to me a lot! As I mentioned in one of my earlier posts, my late doctor laughing stated that if my body can do it backwards, it will! So far, that seem to still be true ....
   
   
   • Fatigue: The Hashimoto's seems to become active during puberty, or for my family, during high stress and/or serious illness. For my daughter and I, it was puberty. As part of that, we became extremely tired all the time, no mater how much we slept. By the time my daughter was 14 or 15 she could barely get out of bed. I suspected she had my thyroid disease, but her pediatricians would not listen to me. It took firing them and taking her to my rheumatologist at the age of 16 to get her diagnosed. The minute she started taking the thyroid pills, she woke up and got our of bed for the first time in 2 years. I was not that bad, but I was exhausted for over 20 years before my thyroid pooped out and THEN I was believed, and began treatment. It was horrible having all the major systems and not being able to get the proper treatment because of a faulty understanding of the test results in relation to the disease.
   
   
   • Weight Gain: As children, my family is super skinny. Come puberty, and we not only begin to put on the normal weight needed to trigger puberty, but we never stop and no dieting in the world will stop the weight gain.
     
     One of the things about all this that I still get from doctors, and which still chafes me, is the often violent and snarling accusation of self-dilution from doctors over my claim that going for 20 yeas un-diagnosed and untreated with Hoshimoto's is what was the major cause of my initial weight gain. Why? Because since starting treatment I have yet to loose weight, thus, A-huh!, it obviously can not be true, for if it was, I would have lost weight. If I try to talk about the fact that I was a dancer in intense daily training, and dieting at the same time when I first gained weight, as well as about the complex nature of my condition and endocrine system, and the generations in my family afflicted with this, my claim is summarily dismissed and I am contemptuously snub as someone who is oblivious to the truth: That I eat to much and that, and only that, is and was the cause for my weight gain. Discussion over! (see more on this generational phenomenon in my family below in the Endocrine System Metabolic Syndrome section).
   
   
   • Cold Intolerance: Being cold, and being susceptible to the cold, has been a life time issue since puberty. It was worse before we were treated for the Hashimoto's. And, it was also not an issue at all during menopause for me. It was rather nice walking around during the winter with my internal heater keeping me warm!
   
   
   • Low Basel Body Temperature:  Besides feeling cold all the time, low basal body temp is a known symptom, and problem. It is popular right now to equate low basal temp with proof of low thyroid function. I tend to agree with most scientist and doctors that that is a mistaken use and understanding of the low temp in hypothyroidism. Yes, you can have a low body temp with hypothyroidism, but in of itself, that alone is no proof. It needs to be in conjunction with other symptoms, physical features, and test results. I had the extreme low normal thyroid level, the symptoms and physical features listed here, AND a basal temperature of 97.0 F. Well below the new normal range. All taken together it was obvious what was going on, but back in the 1970-90s, doctors relied on the test numbers only and ignored what the patient was actually displaying and experiencing, especially if you were a woman, and heavens forbid, overweight while being female as well. Today, my basal temp is higher, but still lower than 98.6 F, usually by one whole degree more or less, on average.
   
   
   • Sparse, Coarse, and Dry Hair: Not sure about this because I think thinning hair is just an inherited feature of my mother's family. But if I do not take extremely good care of my hair, I do get this very badly. And besides, my daughter's hair is thick and luscious, and below her waist. She takes after her dad, lucky girl!
   
   
   • Heavy Menstrual Flow or Irregular Periods: >My daughter and I have/had this "in spades".
   
   
   • Depression: Yap, here it is again. So much of what we deal with have "depression" as one of the symptoms. Which is why it is so hard to treat in us.
   
   
   • Droopy Eyelids: I have had this since puberty. Doctors still ask if I can see alright; does it interfere with my ability to see. Nope, not that I can tell. Though it does keep the sunlight from hurting my eyes so much.
   
   
   • Goiter: Despite having all of the above, I also had a small goiter that was not found until I saw my first endocrinologist as an adult. He was surprised that it had not been found before. I always wondered, and I asked about why this thing called the thyroid in my throat clicked back and forth across my esophagus. It was a bit painful at times, but mostly annoying and it would catch sometimes before popping over to the other side when I turned my head. I simply got snickers from the doctors examining me (nearly all male), and was told that I just had a rather masculine Adams Apple. Since going on hormone treatment, my enlarged thyroid is now all gone.


2. Celiac Disease: Oh Celiac, oh Celiac, how do thee embrace my life? Let me count the ways ... no really, let me! Of all the things that I thought were medically wrong with us, I truly never thought it would be the inability to consume gluten that would be one of the biggest culprits. I am half Italian, for Christ's sake, and raised on my Italian-American mother's wonderful cooking! We lived on pasta and sour dough french bread most of our lives! They were the mainstays of our diet. I now shutter when I think about it.
   
   Just what is Celiac disease? I ask you this because with all the info and hysteria floating around about gluten, most people totally miss-understand it, or simply deny it even exists, even many doctors still today pooh pooh it. Gluten gets a bad rap. People equate it to a toxin, they believe they would be healthier without it, and other such misinformation. Gluten, is a very important and viable source of plant based protein! UNLESS you have the genetic autoimmune disease for Celiac and/or Gluten Sensitivity. "Gluten is the composite of two storage proteins, gliadin and a glutenin, and is conjoined with starch in the endosperm of various grass-related grains. Worldwide, gluten is a source of protein, both in foods prepared directly from sources containing it, and as an additive to foods otherwise low in protein ... True gluten is limited to certain members of the grass family. The stored proteins of  maize and rice are sometimes called glutens, but their proteins differ from true gluten." - https://en.wikipedia.org/wiki/Gluten
   
   Gluten is NOT a toxin by any shape or means. It is a protein that the immune system mistakes for a undesirable foreign body and sends out anti-bodies to attack and destroy it, if you have the genes in your DNA that do that. IT IS A MISTAKE THE IMMUNE SYSTEM MAKES! I can not stress that enough. Why Celiac is so destructive, and why people get confused about the toxin issue is the fact that the process of destroying the gluten, and some of the by-products from the destruction of said gluten, leave behind chemicals, toxins if you will, that do the actual damage to the villi of the intestines. It is not the gluten that damages the villi by just being present. It is the body's act of destruction that causes the damage, and leaks toxic by-products of that processes into the body as a whole, possibly raising the chances for stomach and other cancers. What is the actual causes of Celiac disease and the damage it does to the intestines and the body itself, is both complex and illusive. There are genetic elements, most likely environmental elements (research shows that something changed in the 1950s causing a 10 fold spike in gluten intolerance markers in the blood), other possible chemicals in wheat that cause or contribute to the resulting symptoms and damages (such as FODMAPs, an acronym for: fermentable oligosaccharides, disaccharides, monosaccharides, and polyols.), and so forth. Much research is still needed to understand and treat this disease, BUT until so, gluten is not the big bad that most people think, except for those small % of people that have Celiac disease, or demonstrate a true sensitivity. Eliminating gluten from your diet is not the magic bullet to a healthier life for most people, and can in fact be detrimental to your overall health and nutrition.
   
   I will get off my soap box now, and get on with the matter at hand: How Celiac Disease Impacts My & My Daughter's Lives, & When and Where A Gluten-Free Diet Helped. Looking over the list as provided by the Celiac Disease Foundation, most of it is just a re-hashing of symptoms and disorders I have already listed here above, and in the EDS-HT list. Hence again why my daughter and I call ourselves onions! I will try to make this brief:
   • Gastrointestinal: "Abdominal pain and cramping, bloatedness with abdominal distension (thought to be due to fermentative production of bowel gas) .... As the bowel becomes more damaged, a degree of lactose intolerance may develop. Frequently, the symptoms are ascribed to irritable bowel syndrome (IBS), only later to be recognized as coeliac disease; a small proportion of people with symptoms of IBS have underlying coeliac disease, and screening for coeliac disease is recommended for those with IBS symptoms." - https://en.wikipedia.org/wiki/Coeliac_disease
     
     For me it started out as painful recurring constipation in my teens with bloating and gas, and finally severe abdominal pain that would keep me up all night and/or double me over. Before going on the gluten free diet, I would look down at my protruding, 9 month of pregnancy looking, stomach and ask when I was going to give birth to this thing that I had been caring around for decades. It became so painful that I often wondered if my gut would burst wide open.
     
     Funny thing about all that. Not funny ha ha, funny ironic. During my late twenties and early thirties I had two separate intestinal x-rays (something they use to do as part of a regular physical back in them olden days), both times the radiologist commented on the abundant gas present in my intestines. One went so far as to comment on the fact that he had never seen someone with so much gas before. But when I tried to ask questions about this, because I was also having pain and bloating, I was immediately cut off and told not to worry about it. They actually seemed both upset that they were heard and afraid to answer my question. I always got the impression they were afraid of instilling concern were they thought non was, thus nipping the potential for hypochondria and hysteria to take root. That was about 20 years before we finally realized we had Celiac disease. Thatwas 20 more years of damage, risk of cancer (such as lymphoma), and the aggravation and creation of other debilitating autoimmune diseases.
     
     Later in life, my gut issues developed into constant diarrhea for about a decade (bet you wanted to learn about that one! Ha!), with occasional abdominal pain that I would break out in a sweat, and if I was standing, it would bring me to my knees. Can't tell you how many walls I have slowly slide down, nor the half hour I once spent on the floor of a bathroom because I could not move. No one ever found me. Very scary experience laying there alone, unable to get help and feeling like your gut is going to leap out of your belly like the creature from the movie "Alien".
     
     My daughter had many of the same experiences, but I believe the damage was a lot less because she went on the gluten free diet at the age of 26, where as I was 51 at the time. I still have GI problems because the damage, I believe, was to severe to heal completely, and because of the stomach acid suppressors I take, that I am now very susceptible to bacterial infections (food poisoning) and parasites. I go to two or more Pot Lucks each month, and would get mild food poisoning symptoms for a day or two afterward, including a mild fever. Since I made the connection between the post-lucks, and occasionally eating out, I have begun to be very cautious about the cooked and raw food I eat away from home. I have not had as much of a problem since, save for the three years I had Giardia from a Pot Luck, until I figured out what it was and took treatment ... sigh! Hence, one of the wonderful side effects of untreated Celiac disease and the life long damage, and threat to your health, it can cause.
     
     All in all, the minute we went on the gluten free diet most of our gut issues either cleared up for the first time in years, and in some cases decades, or got extremely better. My daughter and I have been on a gluten free diet for 10 years now, and even the smallest amount of gluten makes all our gut symptoms come back with a vengeance. I also believe that at this point in my life I still suffer from IBS. So to say the least, I am very, very careful these days, but even then mistakes are made. For example, I recently went through a longish bought with returned gut issues and it took months to find the product that was the source of the cross contamination. Once found and eliminated, it once again cleared up, but I am seeing longer and longer lingering symptoms after each gluten contamination incidence, which does not bode well for my GI tract.
   • Malabsorption (In General): "The changes in the bowel make it less able to absorb nutrients, minerals, and the fat-soluble vitamins A, D, E, and K." - https://en.wikipedia.org/wiki/Coeliac_disease
   • Megaloblastic Anemia: "is an anemia (of macrocytic classification) that results from inhibition of DNA synthesis during red blood cell production. When DNA synthesis is impaired, the cell cycle cannot progress from the G2 growth stage to the mitosis (M) stage. This leads to continuing cell growth without division, which presents as macrocytosis. Megaloblastic anemia has a rather slow onset, especially when compared to that of other anemias. The defect in red cell DNA synthesis is most often due to hypovitaminosis, specifically a deficiency of vitamin B₁₂ and/or folic acid." - https://en.wikipedia.org/wiki/Megaloblastic_anemia
     
     About 5 to 8 years (or more), before my daughter and I went on the gluten free diet, I developed a very severe and nearly untreatable case of Megaloblastic Anemia. My doctor explained to me that my bone marrow had stop producing red blood cells at the rate it should, but had no clue as to why. I ended up on, if memory serves me, 7X the normal treatment dose of iron, with no improvement. Then my doctor told me that I should add 500 MG of vitamin C with my iron, but if that did not work, he would have to start iron shots. Not a good thing that! Thank goodness adding the vitamin C pushed my blood count one or two points into the normal range. Heaven forbid I should forget my iron and C, because I would once again plummet into anemia.
     
     When people scoff at me for being on a gluten free diet, and they often do, I tell them the story of my Megaloblastic Anemia, and how it took being on the diet for a whole year before my anemia was cured (rather dramatically and suddenly), and that since then my blood count tests have been perfectly smack in the middle of the normal range and I have not needed iron supplements since that day. That usually makes them pause and reconsider.
   • Immune & Autoimmune And/Or Correlated Disorders: "Coeliac disease is associated with a number of other medical conditions, many of which are autoimmune disorders." - https://en.wikipedia.org/wiki/Coeliac_disease Some of those diseases that we do have, or know about, and have been impacted by Celiac and a gluten free diet, are:
     • Hashimoto's Thyroiditis: Detailed info above. HT and Celiac are closely tied, as are many autoimmune diseases. Autoimmune diseases tend to run in packs, so if you have one, you are often at a very high risk of having or developing multiple others. As detailed above, my daughter's Hashimoto's disease seems to have either cleared up or become doormat since going on a gluten free diet.
     
     
     • Eczema: "Eczema is a term for a group of medical conditions that cause the skin to become inflamed or irritated. The most common type of eczema is known as atopic dermatitis, or atopic eczema. Atopic refers to a group of diseases with an often inherited tendency to develop other allergic conditions, such as asthma and hay fever." - http://www.webmd.com/skin-problems-and-treatments/guide/atopic-dermatitis-eczema
       
       I have had head to toe Eczema since I was 7 years old. My daughter, since she was 3 or 4 years of age. Since going on a gluten free diet our Eczema has virtually cleared up, with only occasional small flair ups, usually when we accidentally ingest gluten. See below for more about the immune-autoimmune nature of Eczema.
     
     
     • Asthma: "A triad of atopic eczema, allergic rhinitis and asthma is called atopy. The strongest risk factor for developing asthma is a history of atopic disease; with asthma occurring at a much greater rate in those who have either eczema or hay fever." - https://en.wikipedia.org/wiki/Asthma
       
       Like a lot of kids with Eczema, I developed asthma around age 13. All my life it has been anything from mild, to severe, to nearly killing me more than once. Since going on a gluten free diet, my asthma has greatly improved, and most of the time I do not need my inhaler, except during peak air borne allergy seasons: Spring and Fall. My daughter's asthma has also improved since going on the diet. See below for more about the immune-autoimmune nature of asthma
     
     
     • Hay Fever & Other Air Born Allergies: As with the asthma, I use to be so bad that I had to be on an all day, 24 hr allergy medication, just to be able to breath, and not drown in my own snot. After going on the gluten free diet I no longer need the medication, except for occasional season flairs. No more yearly multiple cases of bronchitis and pneumonia, thank goodness.

IMMUNE / AUTOIMMUNE SUSPECT DISEASES: 

Although eczema, asthma, and hay fever/air born allergies are not yet listed as autoimmune diseases, the evidence is beginning to pile up that show that they most likely are, but for now they are still listed as an immune over-reaction. Despite that fact, and the findings from new research, I have included them here. More over, "Allergy and autoimmunity result from dysregulation of the immune system. Until recently, it was generally accepted that the mechanisms that govern these disease processes are quite disparate; however, new discoveries suggest possible common pathogenetic effector pathways ... The presence of autoantibodies in some allergic diseases suggests an autoimmune basis for these conditions. Because of the central role T cells play in immune reactivity, the T cell receptor loci have long been considered important candidates for a common disease susceptibility within the immune system such as asthma, atopy, and autoimmunity. Immunomodulation is the key to successful treatment of asthma and autoimmune conditions." - http://www.ncbi.nlm.nih.gov/pubmed/14646381

1. Eczema: As mentioned above, Eczema "is a term for a group of medical conditions that cause the skin to become inflamed or irritated. The most common type of eczema is known as atopic dermatitis, or atopic eczema." In the medical community it use to be believed that eczema was merely a topical irritant because you had hypersensitive skin and you may also be over emotional as well. Yet, "up to 50 percent of children with atopic dermatitis will develop other allergic diseases, including asthma, a phenomenon termed the “allergic march,” the gradual acquisition of co-existing allergic diseases.[Source]"... In the past few years research has shown that eczema shares many of the features and other properties of autoimmune diseases:

   "A fundamental question regarding the allergic march is if a child has eczema, for example, which is associated with TSLP production in skin cells, why would some of those children subsequently be more susceptible to other allergic diseases at different sites of the body such as the gut or the lung?" asks Artis. "Although we have known that TSLP is associated with allergic diseases for many years, how this biological messenger might influence multiple allergic diseases has been a puzzle." - ["Thymic stromal lymphopoietin (TSLP) is a protein belonging to the cytokine family. It is known to play an important role in the maturation of T cell populations" ... "Cytokines, a varied group of signaling chemicals in the body, have been described as the software that runs the immune system, but when that software malfunctions, dysregulation of the immune system can result in debilitating autoimmune diseases"]
   
   The origins of the present study lie in previous reports that showed that different versions of the gene encoding TSLP, an inflammation-producing cytokine, are associated with increased susceptibility to multiple allergic disorders, and that exaggerated TSLP production is associated with asthma, eczema, and food allergies in children. Together, these studies indicate that TSLP could be a critical regulator of multiple cytokine-associated allergic inflammatory diseases. - http://www.uphs.upenn.edu/news/News_Releases/2011/08/allergic-march/

   For my daughter and I this meant an array of mild to severe skin eruptions, lesions, and blistering. These ranged from dry rashes to open, weeping, putrefying wounds. At some points of my childhood these skin eruptions and rashes covered over 50% of my body, more or less. I use to call it my own personal leprosy. The itch is almost undiscribable. It attacked the nerves, and felt like it was all the way into the bones. I would often scratch till my skin would shred and bleed. The only thing that would stop the itching was to dig my nails deep into my skin till the itch stopped, or running scalding hot water over the area till the skin was nearly seared and the pain was too great to continue. But it would stop the itching and allow me to apply cream or ointment before it all started over again.
   
   These were not itchy dry rashes or bumps. These lesions were raw open flesh that often had a bad odor and leaked amber colored fluid that would dry into a crystallized crust. I had red raw rashes on my eyelids (as well as my face and behind my ears), and as I slept, the same amber fluid would leak out along the edge of my eyelids, gluing them shut. By morning I could not open my eyes. I would have to pick and pull bits and pieces of the crystallized crust from my eyelids, often tearing out eyelashes at the same time, until I could finally open my eyes. Another time, in 5th grade, I had tiny blisters running along the sides of my fingers that itched all the way to the bone. At the same time my hands would dry out, the skin would crack open bleeding, and along the bottom of my fingers the skin would rip open in bloody lengthwise slashes on the flat area between each joint. I could not bend my fingers without causing them to bleed, so I devised a form of bracing using popsicle sticks. I would slather my fingers in Hydrocortisone cream, then lay my fingers along the sticks and held them in place by wrapping gauze around my fingers and the sticks. Very hard to write when all 10 of your fingers are taped flat to popsicle sticks. I must have looked very odd, yet no one, that I remember, every said a word. Not even the teachers. I did find decades later in my school records that the school had been hounding my mother to take me see a doctor when I was in 1st or 2nd grade. Back then we had no insurance, but eventual after my mother remarried and we had Kaiser, the school stopped bugging her to take me to a doctor. I was not aware of any of this, other than my mother accusing me of causing the disease because I was to "emotional". She always made a fuss about how unpleasant it was taking care of me and my Eczema, always saying or implying that I just did not try hard enough to get better. I learned at a very young age to doctor myself most of the time.
   
   Besides the itching, there was stinging and burning, as well as infections in the open wounds. My daughter had the same types of lesions, but it did not cover as much of her body. Suffice it to say, it was pure torture. It was by far one of the major nightmares and emotional scarring of my childhood. Yet, when we went on the gluten free diet, our eczema went into remission. We now have only very rare, and small flair ups, especially after inadvertent gluten digestion. We still have Eczema, but it is nothing like it was when we were children.



2. Asthma: Asthma as a paradigm for autoimmune disease: "by looking at the key elements that regulate the immune response in both asthma and autoimmune conditions: mast cells, antibodies, T cells, cytokines, and genetic determinants. The parallel appearance of asthma and autoimmune conditions in the same patients may reveal that such aberrations of the immune system have a common pathophysiologic mechanism. Mast cells, which play a key role in asthma, and the wealth of inflammatory mediators they express, make it likely that they have profound effects on many autoimmune processes. Activation of protein kinases by inflammatory cytokines and environmental stresses may contribute to both allergic and autoimmune diseases." - http://www.ncbi.nlm.nih.gov/pubmed/14646381
   
   So, along with the type and severity of the eczema that we had, along came the requisite asthma in our early teens. It started out mild, then seasonal, then finally, for me, brought on by running or other outdoor exercise. I was a dancer and as long as I paced myself and did not dance in the grass in the spring, I was OK. By my early 20s it was full blown and in the fall of my 22nd year, I nearly died from an acute attack while camping in the White Mountains of New Hampshire. My now ex-husband had to literally carry me to the emergency room. At that point I was merely taking small sips of air and near blacking out from the lack of oxygen. A shot in the arm of adrenaline gave me instant relief and my first large gasp of air. I then began to talk a mile a minute and giggle inappropriately. I was and felt very silly, but joyous at being able to breath and not dying!
   
   Since that episode while camping, the worst time of year for me (besides spring), has been and still is in the fall when the trees, and rag weed and other grasses, shed there pollen. Before going on a gluten free diet, I would end up in the emergency room for emergency breathing treatments every fall. Once I was gluten free, my asthma improved and I stopped going to the emergency room for about five years. But recently since the pollen count has been at all time highs these past few years, my asthma has come back with a vengeance. Now I am having great difficulty in breathing and constantly loosing my breath, with even the smallest and mildest of movements. I use both a rescue inhaler and a long-term steroid inhaler everyday. If I miss a day or two, breathing becomes very difficult. My daughter, on the other hand, has had long term mild asthma, that has now, in her 30s, developed into chronic bronchitis and some OPD (Obstructive Pulmonary Disease).



3. Hay Fever & Other Air Born Allergies:  "Allergies are an overreaction of the immune system to substances that generally do not affect other individuals. These substances, or allergens, can cause sneezing, coughing, and itching. Allergic reactions range from merely bothersome to life-threatening. Some allergies are seasonal, like hay fever. Allergies have also been associated with chronic conditions like sinusitis and asthma." - http://www.cdc.gov/healthcommunication/ToolsTemplates/EntertainmentEd/Tips/Allergies.html As noted above, Allergies bare many of the same aspects and characters of autoimmune diseases, and the medical community is beginning to do research into the idea that they are indeed autoimmune in nature and substance. I and my daughter do not find that odd or new in any way. We have long suspected that.
   
   The hay fever and other air born allergies also started at the same time as the asthma, that is, in our early teens. Hence puberty. As you read this blog you will see that very point repeating itself often, i.e. 'on set at puberty'. Like the asthma it started as a season thing, then became all year round, then, for me, it became so intense that my nose dripped and swelled all the time, and I would do explosive bouts of sneezing. Often 10 to 15 sneezes in a row, so quickly that I often lost my breath and became dizzy. The sneezes became so powerful on a daily basis that I often cause whip-lash, dislocated vertebra in my neck, and popped out many of my rib heads in both the front and back of my rib cage. I was miserable and used up truck loads of tissues every years. This constant chronic weeping from the nose also cause recurring lung infections, especially during the winter. It also often triggered or exacerbated my asthma. With a full blown episode I would end up on the bed with my nose running full speed, sneezing over and over again, a massive neck and headache, and gasping for breath. It felt like I was drowning in my own snot. In a way, I was.
   
   Finally in my 30s (late 1980s) I went to an allergist. They did a skin scratch test, with 100 single and combo scratches. I tested positive for over 90 to 95% of them, all air born: all trees, all grasses; all furred animals, all feathers, all pollen, all dust mites, and so on. Only mold had a low reaction percentile, much to my surprise. When I asked the doctor about getting allergy shots, he claimed that my allergies were too many and too wide spread for shots to be of any use. I believe that today things are different, and they can treat someone like myself. I believe so because my niece has just tested positive in exactly the same way that I have, with the same responses and allergies, and her allergist IS making a special series of shots for her.
   
   Things got so bad for me that when Seldane (Terfenadine - removed from the market in 1997, and replaced with Allegra), a 24 hour non-drowsy anti-histamine, came out, I started using it every day. This was great in many way. Not only because it was a 24 hr drug, but it did not effect me the way all other anti-histamines did. Other anti-histamines knocked me out with just a single dose, and sometimes caused a drug induced form of Apnea. Seldane was a life saver for me. When Allegra replaced Seldane, it worked, but nothing since has ever worked as well as Seldane did for me. I took Seldane/Allegra for nearly 15 years until I went on my gluten free diet. Since then I no longer have to live on those drugs and my allergies are much more manageable, and often, I go nearly symptom free without any medication. I still am very allergic to dust mites and seasonal pollen, but other than that, life is so much better.
   
   • Allergic Rhinitis:"Allergic rhinitis is an allergic reaction that happens when your immune system overreacts to substances that you inhale, such as pollen.
     
     The two types of allergic rhinitis are:
     
     
     • Seasonal allergic rhinitis (hay fever)
     • Perennial allergic rhinitis, which occurs year-round
     
     Hay fever is caused by outdoor allergens. Perennial allergic rhinitis is caused by indoor allergens, such as dust mites, pet dander, and mold ...Most patients with allergic rhinitis have symptoms before age 20 ... Many people who have allergic rhinitis also have asthma." - Source: Allergic rhinitis | University of Maryland Medical Center http://umm.edu/health/medical/altmed/condition/allergic-rhinitis
     
     I have posted this separate because of the significant history that we have with this, especially my daughter.
     
     My daughter and I have chronic sinus headaches caused by allergies. We have had them since puberty, and they have never completely gone away. Even with the improvement afforded by staying on a gluten free diet. Before the GF diet, sinus headaches would get so bad that we would wake up screaming in pain, literally. Only heavy duty decongestants would give us any form of relief. These screaming headaches happened at least once a month, and during peak seasons, weekly, often lasting for days on end. In the end, my daughter, who had a four year, non-stop, massive headache from age 9 to age 13, had to have surgery to carve out her sinuses, and give her some relief, and clear up the chronic infection she had.
     
     Often the sinuses would swell so bad that they would push down on the long roots of our teeth, loosen them, and displace them downwards so that we could not fully close our mouths. Today, since going on the GF diet, we are doing better, but our sinuses are still swollen and we always have a chronic, constant low grade sinus headache. Also, when we get a bad cold on top of the Rhinitis, our sinuses still swell up and displace and loosen our upper teeth. When this happens it feels like someone has shoved a large, thick spike right through your check bone. So much fun!

So, there you have it. Part one of the remaining two lists (after the EDS-HT list). The next post will be for the Endocrine System Metabolic Syndrome condition that runs through the female line of my Sicilian family. I was going to do these last two list all in one post. Thought it would be a simple matter of listing them, since most people are familiar with these conditions. But after doing some research to bring me up to-date, I learned so many new developments, and new research, that the first of the two remaining lists just kept getting longer and longer. Finally I just gave in and gave it the same attention and detail I did to the EDS-HT list. I am glad I did. It has been very educational and has confirmed and made steadfast my belief that all that my daughter and I are going through boils down to an autoimmune issue, and may include damage in general to chromosome 2, were many, if not most, of these condition's genetic markers can be found. If this is true, then there is hope that a transfusion of donated bone marrow may indeed be a viable solution for us. It is in the bone marrow, from what I understand, that the immune cells are taught "Self-Non-Self" coding. A failure in this coding is what is believed to be the main cause of autoimmune conditions. Why this happens, is another issue, most likely a genetic issue, which is corrected with the change in the bone marrow DNA from a marrow donation from a different, unaffected person. So there is still hope.