Sunday, January 29, 2017


My most recent picture - age 62 1/2
January, 2017

This is one of those posts that I write, not for myself, but for the thousands of people I represent. I hope to encourage people not to judge the sufferings of others by simply looking at the person. No one has x-ray vision. No one can miraculously feel the pain that is being endured by any other person, especially in a world in which people are punished for expressing pain and suffering, and many of us put on a brave face and a smile, just to keep from being criticized harshly.

Just the other day, I  told a neighbor of a difficulty I was having, in response to her question about how I was doing. Instead of being sympathetic and understanding, she got on her soap box and started lecturing me about how I should not feel this pain, how I should pretend I have no suffering, and how I should not tell anyone the truth.

There is much advice from Christians that advocates for putting on a sunny face, but the majority of the Biblical injunctions when dealing with suffering say that we are to be sympathetic, to be loving, to be like Jesus. Jesus said to serve one another. He said to treat one another as we would wish to be treated. The Old Testament advised us to rejoice with those who rejoice and mourn with those that mourn.

No one wants to be lectured when they are in pain. No one wants or needs advice when we are depressed or hurting, but we live in a judgmental, selfish world. It is SO much easier to criticize the pain of other people than it is to do anything to help alleviate it. That is why so many people criticize THE POOR these days. They resent any help that is given to the poor vis-a-vis taxes, so the help that is given by the government is rather miserly, especially when compared with civilized countries throughout the world. Even though the help is miserly and does not come anywhere near addressing the basic needs of the poor, especially those that are disabled, there is a constant drumbeat from the conservative camp, demanding that the monies be lessened.

Denmark, on the other hand, has very high taxes and an equally high standard of living. They report that they are the happiest country in the world. Denmark cares about all their people and does not subscribe to the dog-eat-dog, sink or swim, malignant capitalism that rules America.

I write about my personal experiences so that you all my extrapolate my experiences to include those of millions of Americans who suffer and find no compassion from Catholics who ought to know better.

My whole adult life, people have been telling me that I look very young for my age. The other day, my bathing assistant reacted with great surprise when I told her my age. Many people would be thrilled with this state of affairs, but looking young for one's age CAN be the sign of a little-known syndrome called Ehlers-Danlos Syndrome (named after the researchers who pinned this down. I wish scientists wouldn't do this. It just makes it difficult on all those of us who have to wrap our mouths around the name. Why didn't they call this super bendy disease or circus girl syndrome.)

Many people have expressed curiosity about my disability status. I think part of the curiosity (which, in some people, is actually judgmental suspicion in nicer clothes) is that I just don't LOOK like I am disabled. I look great, apart from being fluffier than what is fashionable in this era, but you can't see pain, you can't see fatigue, you can't see the mutated genes or the multiple body parts that are composed of collagen, which is malformed, due to the mutations.

Several years ago, one of my neighbors ran into me at the mailbox and asked me, "Why aren't you working? You don't look disabled."  A distant cousin of mine called me last year to tell me that her daughter JUST learned how to get disabled people WORKING AGAIN and that there was no reason I shouldn't work! Of course, she doesn't know a single thing about my disabilities, but people are like that these days. It is popular to criticize the poor, and everyone seems to "know" someone who is "gaming the system" or cheating or whatever. The don't know the names of these people and have never been into their homes, much less their bank accounts, but these malignant anecdotal fairy tales get spread around the social media and they become the urban myth that people believe.

It is easy to imagine that the final solution for the poor is to get them all working. Every time I hear someone cheerfully opine that the cure for poverty is to get people to work, I want to vomit. Ignorant people talk about teaching the poor to fish and giving them "a hand up, not a hand out."

97% of the poor who are receiving governmental assistance are elderly, disabled, or children! The elderly spent their whole lives working. They're done with that. They and the disabled CAN'T work any more. The days when we put children to work as soon as they could walk have long since passed. Less than 1% of the poor in America are able-bodied people who choose not to work. Unless you want to put grandma and her children to work in some factory or sweat shop, that tired old cliche about teaching a man to fish needs to be RETIRED.

Here is a visual to help you understand WHERE the entitlement monies go:

I began working when I was 11, in 1965, but in my 30's, most of you will remember that I was a religious, working in a Hindu convent (which is where I learned about Jesus and became converted to Him!) While cooking one day, I fell right on my tailbone and cracked it but good, smack dab on the hard Mexican tiles. With the already existing scoliosis at the hip, previously broken tailbone, and chronic back trauma, I was in terrible shape. In fact, I had to be scooted around in a wheelchair which, evidently, the other nuns really resented because the head of the convent went to the Swami in charge and told him that I was "faking it," in her words. She knew nothing, of course, and hadn't so much as questioned me or the doctors, nor had she seen the X-rays that clearly showed the multiple issues. I suppose she thought I looked just fine and decided I was "malingering."

One of the Ehlers-Danlos websites pointed out this tendency of others to judge harshly those who are afflicted with this syndrome, as looks can be deceiving and some people really DO prefer to judge a book by its cover. Although EDS isn't curable, I feel wonderful knowing that I am vindicated, after years of people treating me unkindly as a result of this illness.

The pain of EDS, in particular, is far greater than what one would expect upon examination of the x-rays of the osteo-arthritis that shows up rather early in life. That is because only part of the pain is related to the bone-on-bone pain of the arthritis itself. Some of it stems from muscular stress and injury caused by the muscles having to do the work that ligaments and tendons are supposed to be doing. Some of it is caused by the syndrome itself, which is somewhat related to fibromyalgia. There are new studies on the pain aspect of EDS, and more news should be coming up about that aspect fairly soon, I would bet.

Depression is also one of the symptoms, though it does not appear to be situational, but rather a chemical function arising out of the mutations of the genes that cause this illness.  I read an article recently that was too far above my comprehension. Something about brain chemistry was discussed in relation to the depression. It is not the typical depression, and I think that there may be some specific anti-depressants that would be called for, under these circumstances.

During the course of my research about Ehlers-Danlos, I began to read about the lesser-known presentations in some forms of this disease, I felt like I was making check marks on a looooong list of weird physical symptoms that had hounded me my entire life, starting in early childhood.

A high palate and "crowded teeth" are another common feature of those with EDS, and I have that as well! When I was a child, they wanted to pull 4 teeth to solve the crowding issue.

My doctor and I are still comparing notes between my symptoms and the research. We have not pinned down WHICH version I have, but it appears obvious that, of the 6 different types of EDS, I seem to have the most common form of it, the hypermobility type. It is the "least severe" which probably accounts for the long time in which it has taken for me to be diagnosed. I've always known there was something, in particular, that was wrong with me....something that would explain the physical problems that have caused me such pain and inconvenience my whole life, but I don't think that the doctors have been terribly interested in diagnosing. These days, it seems that medicine has to be fixated on dealing with the symptoms, since insurance companies pressure doctors to handle many more patients than is probably good for us.

Frankly, my diagnosis was fueled entirely by my curiosity and the fact that I am an experienced researcher. I was motivated and just happened to hit upon the right websites. Once my doctor was alerted to my symptoms dating back to childhood, however, he jumped right on board. We are all happy to have an explanation of my complaints.

My experience of EDS was initially"tipped off" by extreme double-jointedness in my whole body. Even though I am in my 60's, I am still really bendy! I can bend over and touch my palms to the floor without bending my knees. Makes for a great showing in a yoga class, but can lead to lots of sprains, strains, falls and breaks, which is what I had my entire life, starting in early childhood.

Children with EDS are often accused of being "clumsy," and that is because they have not yet developed the motor skills necessary to take over where the tendons and ligaments are loose. Even today, I have to move slowly and do all my physical activities very deliberately, otherwise, I am prone to tripping, falling, dropping things, and breaking many items.

Before I was 5 years old, I remember my parents calling the doctor to come out to the house in the middle of the night because I was having terrible pain in both legs, starting from the hips on down. The doctor diagnosed them as "growing pains," but now I read on various EDS websites that many sufferers of this disease have those awful leg pains as children. The explanation is that the effort needed by the muscles to take over for what the ligaments and tendons are supposed to do causes terrible muscular pains and spasms.

(Asthma and multiple allergies are also common in people with EDS. I remember the doctor coming out to the house for THOSE issues also.)

My tendons, cartilage, ligaments and all the other things that are supposed to hold my joints together are unreliable and let me just fall where I may. I remember once when I was about 10, I was standing in the back yard, just watching other kids playing, when my left ankle gave way and I fell to the ground, breaking my right elbow.

By the time I was 11, I'd had 5 casts on my left foot, having broken numerous bones from falling as a result of my ankle just giving way. At the same time, I developed severe varicose veins before the age of 13.

I've never been able to find shoes with any ease, since I had bunions while still very young, extremely wide feet with narrow heels, and flat feet. The collagen-based structures could not hold my feet together in the way that they do in normal people.

Likewise, nothing could hold my spine in place when I was brushing my teeth too vigorously one morning when I was about 24 years old, and my back went into horrific spasms. I missed at least a week of work and was put on strong muscle relaxers.

The veins in my leg, in addition to being varicose, also have defective valves that cannot push the blood back up to the heart. Consequently, I've never been able to hold a job that involved any standing. In my early 20's, I got a job at Nordstrom's in a mall in Los Angeles. I was excited about getting a 40% discount off any clothes I would buy, but I only lasted 4 days. My job should not have been physically taxing for a young, thin, and "apparently" healthy woman, but it caused me extreme pain in my legs and hips and, by the end of those 4 days, I became bedridden and stayed there for at least a week.

One of my legs is longer than the other, not by much, but this was confirmed by more than one chiropractor. My father had the same problem. This brings up the fact that this disease is inherited from one's parent or parents.

Purchasing clothing has always been particularly difficult, especially when trying to buy pants because my extremities are too long for my torso. This is quite common. Usually, the fingers are also very long, but I did not inherit that aspect. I am really tired of my arms popping out of the sleeves of all my shirts and my pants looking like I am going to a flood. In the early 1970's, you used to be able to buy all sorts of slacks and blue jeans that were not hemmed because some women were wearing sky-high platform shoes, I suppose.

Due to a very short torso, not only are the pant legs too short, but the "waist" of all pants goes up to my bra strap...just one of the several reasons that I prefer to wear dresses, rather than pants. "Maxi dresses" are never long enough, though. If they fit in the bodice, they're at least 4 inches too short in the length. This is really inconvenient because I am keen to hide all those ugly varicose and spider veins.

When I was 10 years old, I was reading my mother's library of books. My parents never bothered to buy us children's books. I was reading Shakespeare's complete works and Somerset Maugham and O'Henry, but at school I was getting D's. It was decided that my vision was the problem, so my mother took me to the optometrist who asked me, "read the top letter on the eye chart."

I said, "What eye chart?"

It turns out that, due to the fact that the human eye is made almost entirely of collagen, people with EDS are often extremely nearsighted, with multiple astigmatisms, floaters and cataracts. Operating on the cataracts may not be recommended, however, due to poor wound healing. Also, I have macular degeneration, from which I will likely become blind. Without glasses, I am legally blind and have been since a child.

I must wear glasses constantly, changing from one version to another, to accommodate different vision issues, depending on whether I am reading, writing, watching television, going outside in the sun. It is extremely important to protect my eyes from all glare and sunshine so I never have to make a decision about whether or not to have surgery on my eyes.

My eyeglasses HAVE to have adjustable nose bridges because, like many EDS sufferers, I have an extremely narrow bridge. For some, their entire nose is quite skinny. I can't take advantage of the low-cost eyeglasses that are advertised on television all the time, as they're all plastic, and even the little eyeglass patches with adhesive on them won't keep the plastic glasses from sliding down to the tip of my nose.

Local anesthesia often doesn't work on people with EDS, something that doesn't surprise me at all, but which surprised the last dentist I saw, many years ago. By the time he finished shooting me with novacaine, the first shot had already worn off. After that experience, I had to get all my work done with a dental surgeon who would put me out.

Last year, I had surgery on one of my fingers. There was a growth that turned out to be benign. The anesthesiologist refused to believe that local anesthesia does not work for me, and dismissed my constant complaints with a paternal, condescending manner. I ended up waking up twice during surgery! The anesthesiologist's resident, not expecting me to wake and see what he was doing, was reading his email on his telephone! I told him, "Hey! I'm awake! Put me back to sleep!"  He did so, without a glance in my direction or an apology.

While the written post surgery directions told me that I wouldn't have use of my arm until many hours after surgery, my use and function on that arm was completely normal when I woke from surgery (for the last time.) At the time of this surgery, I was unaware of EDS. My negative experiences with this surgery could have been alleviated, had I known.

There are some dermatological signs in EDS, and I have very slight presentations in this regard. Soft, velvety skin is one sign. Super stretchy skin is another, which I do not seem to least at this time of my life. An odd type of scar formation is present in many, and I have a bit of this, having somewhat delicate skin. I STILL have a scar from a slight injury on my tricycle when I was 5 years old. These scars tend to widen and whiten. They're called cigarette paper scars.

Scoliosis is common in EDS. I have that as well as sciatic issues, which is equally common.

A tendency to faint is another symptom, as is fatigue, especially when one adopts a position for too long of a time. Like sharks, we must keep moving.

For the last month, I have been suffering from incessant vertigo, dizziness, a feeling of faintness, fatigue and sleepiness. This is why the nurses have been coming to care for me, as well as an attendant, who helps me bathe. Some day soon, I hope to have a housekeeper who may cook, clean and take me on errands. AFFORDING it may be an issue, though I am pleading for assistance through Medicare. We shall see what they say.

A scooter is also a piece of equipment that I will be needing immediately, as is a large bendable bed for the bendy hermit. Though Medicare MAY pay for portions of these items, I will need to pay portions of it.

I also need to move to a hermitage that addresses my physical and spiritual needs.

Anyone able to help financially, please click on the DONATION button on the top, right-hand side of this blog.

All others, I beg for your prayers. Please ask for a small house with its own fenced yard for the service dog, very close to the church which our Lord wishes me to attend; a scooter able to transport me from the house to the church; a car with a lift meant for the scooter; funds for an attendant; eyeglasses; and dental work.

The three sets of eyeglasses that I need will cost half a month's income. Obviously, this is beyond my capacity.

There is no cure for Ehlers-Danlos Syndrome, but pain and other issues may be addressed. I have faith in your prayers.

Anyone wishing to gather more information about Ehlers-Danlos, please refer to THE EHLERS-DANLOS SOCIETY

God bless us all.

Silver Rose

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