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.